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Date: Fri, Sep 18, 1998 at 21:23:17 (EDT)
Poster: Lori <##> giuffre@sprint.ca To: Holly MCCarthy Subject: Re: pigmented Synovitis <##>Re: pigmented Synovitis Message: Holly, I don't know where your from, but in my research for finding treatments, I found a few Doctor's that were researching PVNS. Here in Canada, and also in Texas. If Texas isn't a practical option perhaps getting in touch with this University could lead you to a Doctor with a study closer to you. Let me know if your interested and I'll dig up the study and forward you the information. Good Luck. Return to Index
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Date: Fri, Sep 18, 1998 at 21:17:06 (EDT)
Poster: Lori <##> giuffre@sprint.ca To: Ellen Subject: Re: Re: alternative treatments?<##>Re: alternative treatments? Message: Has anyone has any success qith any alternative theraphy's or treatments to deal with the pain and discomfort that comes with PVNS? As a matter of fact, I'm starting a series of acupuncture treatments this afternoon. My physical therapist said that a number of her arthritis patients have found relief through acupuncture so I thought I'd give it a try. Certainly can't hurt....(although I have to admit I'm a bit skeptical). My hope is that it provides some relief of the day-to-day discomfort I've had since this last surgery (in Feburary). If anyone is interested, let me know, and I'll keep you posted on how it seems to be going and whether or not it seems to help. Ellen, I am very interested in hearing about how you do with your treatments. Please keep me posted. I'm getting so frustrated with the daily discomfort, and the limits it sets on my activities. I have a son,and even an evening walk to the park can set off the swelling and pain. GOOD LUCK! Return to Index
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Date: Fri, Sep 18, 1998 at 13:34:20 (EDT)
Poster: Ellen <##> eavery@law.harvard.edu To: Lori Subject: Re: alternative treatments?<##>Re: alternative treatments? Message: Has anyone has any success qith any alternative theraphy's or treatments to deal with the pain and discomfort that comes with PVNS? As a matter of fact, I'm starting a series of acupuncture treatments this afternoon. My physical therapist said that a number of her arthritis patients have found relief through acupuncture so I thought I'd give it a try. Certainly can't hurt....(although I have to admit I'm a bit skeptical). My hope is that it provides some relief of the day-to-day discomfort I've had since this last surgery (in Feburary). If anyone is interested, let me know, and I'll keep you posted on how it seems to be going and whether or not it seems to help. Return to Index
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Date: Thurs, Sep 17, 1998 at 22:24:41 (EDT)
Poster: Lori <##> giuffre@sprint.ca To: Everyone Subject: alternative treatments? Message: Has anyone has any success qith any alternative theraphy's or treatments to deal with the pain and discomfort that comes with PVNS? Return to Index
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Date: Thurs, Sep 17, 1998 at 18:37:46 (EDT)
Poster: Holly MCCarthy <##> holly_Mccarthy@hotmail.com To: Everyone Subject: pigmented Synovitis Message: Hi, Everybody I am new to this page so if you could help me out I would appreciate it. I have had pigmented synovitis since I was 13. Now that I have passed the golden age of 18 by four years the docters want at least ten thousand dollars down to even touch my Knee. I would like help finding a doctor that is willing to do the surgery for reasearch if possible. Please help me find one. Thankyou. Return to Index
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Date: Thurs, Sep 17, 1998 at 18:37:13 (EDT)
Poster: Holly MCCarthy <##> holly_Mccarthy@hotmail.com To: Everyone Subject: pigmented Synovitis Message: Hi, Everybody I am new to this page so if you could help me out I would appreciate it. I have had pigmented synovitis since I was 13. Now that I have passed the golden age of 18 by four years the docters want at least ten thousand dollars down to even touch my Knee. I would like help finding a doctor that is willing to do the surgery for reasearch if possible. Please help me find one. Thankyou. Return to Index
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Date: Tues, Sep 15, 1998 at 19:35:25 (EDT)
Poster: Therese <##> rawson@bmt.net To: Dan Krings Subject: Re: Re: Re: Re: Re: Artifical Knee Replacement <##>Re: Artifical Knee Replacement Message: Hi, I have been told that you actually DO have a synovium even with an artificial knee and that, yes, the pvns can come back (or appear for the first time). Knee replacement just gets rid of the damaged joint. It is not a cure for pvns. Sorry, but I'm fairly sure of that. I hope it helps. I apologize for my mis-information. I was simply relaying information that was given to me by my doctor. As I understood the situation, a knee replacement removes all of the cartilage and along with it the synovium. I would like to know more about the likely return of PVNS. Have you seen any literature that mentions this? If so, I would like to show it to my doctor. I'd like him to know as much about PVNS as I do, especially since I am scheduled for surgery in November! Well, I am not even sure yet if I have this disease. The Lab tests are not back yet. But, I guess it is very possible to have it with an artificial knee. My theory is that if I am positive for this disease, it is what destroyed my knee in the first place and was never diagnosed. Since Sunday, I have read through many cases regarding this disease on the net, through searches. I have read about people that are on their second knee replacement due to the damage to the knee joint. I know that at this time my artificial joint is in great shape. I got the stuff out of my knee before it had a chance to destroy my lining. From what I have read, a knee replacement is NOT a cure, it will just provide relief from the joint damage and give you back some of what you have lost with your real knee. I strongly recommend a replacement if you are to that point. I was 36 when I had mine. Just remember, rule of thumb is you can only have two in a lifetime!! You will still need surgery for your disease to k eep cleaning out the tumors. It has been 3 1/2 years since my replacement and whamo, it all of a sudden am having lots of problems with my leg. It started two months ago, I thought I had a pulled muscle, it was a hemmorage into my calf (bakers cyst) due to the tumor in my knee! Its a long, long story these past two months, I will e-mail you with it if you want. Anyway, if I do test positive for the disease, it is the first time that I have ever heard of this disease, and I have and artificial knee! Let me know if you have any more questions, a knee replacement is quite an operation to go through. I will hope for the best for you. Therese Return to Index
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Date: Tues, Sep 15, 1998 at 18:13:44 (EDT)
Poster: Dan Krings <##> dkkrings To: Nadia Subject: Re: Re: Re: Re: Artifical Knee Replacement <##>Re: Artifical Knee Replacement Message: Hi, I have been told that you actually DO have a synovium even with an artificial knee and that, yes, the pvns can come back (or appear for the first time). Knee replacement just gets rid of the damaged joint. It is not a cure for pvns. Sorry, but I'm fairly sure of that. I hope it helps. I apologize for my mis-information. I was simply relaying information that was given to me by my doctor. As I understood the situation, a knee replacement removes all of the cartilage and along with it the synovium. I would like to know more about the likely return of PVNS. Have you seen any literature that mentions this? If so, I would like to show it to my doctor. I'd like him to know as much about PVNS as I do, especially since I am scheduled for surgery in November! Return to Index
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Date: Mon, Sep 14, 1998 at 21:56:27 (EDT)
Poster: Nadia <##> To: Therese Subject: Re: Re: Re: Artifical Knee Replacement <##>Re: Artifical Knee Replacement Message: Hi, I have been told that you actually DO have a synovium even with an artificial knee and that, yes, the pvns can come back (or appear for the first time). Knee replacement just gets rid of the damaged joint. It is not a cure for pvns. Sorry, but I'm fairly sure of that. I hope it helps. Return to Index
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Date: Mon, Sep 14, 1998 at 20:10:26 (EDT)
Poster: Therese <##> rawson@bmt.net To: Dan Krings Subject: Re: Re: Artifical Knee Replacement <##>Re: Artifical Knee Replacement Message: Thanks for the response, my problem is that I have already had a knee replacement, now, when they operated last Friday, they believe they found PVNS. They sent everything to the lab for testing. That is my question, how can I have this if I ALREADY have an artificial knee? I have no synovium since I have an artificial knee! Return to Index
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Date: Mon, Sep 14, 1998 at 10:20:44 (EDT)
Poster: Dan Krings <##> dkkrings@michsci.com To: Therese Rawson Subject: Re: Artifical Knee Replacement <##>Re: Artifical Knee Replacement Message: I have no experience directly with knee replacement, or the cyst that you mentioned. However, I have had PVNS in my left knee for 16 years, and I have read everything that I could find on the subject. As I understand it, knee replacement is the last thing that can be done once PVNS has eroded the bones to the point where other surgical options are useless. You can learn a lot more about this disease by reading all of the messages on this web site. Briefly, PVNS is an aggressive inflamation of the synovium, the shiny lubricating surface of the cartilage, that typically needs to be cleand off periodicaly. When a knee replacement is done there is no longer any synovium, or any cartilage for that matter, so it is reasonable to assume that PVNS is impossible. Good luck. You're not alone. Return to Index
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Date: Sun, Sep 13, 1998 at 21:22:47 (EDT)
Poster: Therese Rawson <##> rawson@bmt.net To: Everyone Subject: Artifical Knee Replacement Message: I have just been diagnosed with PVNS on 9/11/98 and am trying to find out as much about it as I can. Four years ago I had a total knee replacement of my left knee and it has been great. I went to the doctor complaining of a "pulled muscle in my left calf". It turned out to be a large cyst from a leakage from my knee. I now have a 12" incision down my calf as well as having my knee cleaned out through orthoscopic surgery. I am totally bummed. Can anyone please give me information about this and how often I can plan on surgery. Also, does anyone out there have this with an artificial knee? Thanks, Therese Rawson Return to Index
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Date: Sat, Sep 12, 1998 at 23:54:38 (EDT)
Poster: Lori Giuffre <##> giuffre@sprint.ca To: john and Helen Lu Subject: new email address Message: Sorry for any confusion I have changed my service provider...so I now have a new address. All the best. Lori Return to Index
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Date: Fri, Sep 11, 1998 at 20:06:04 (EDT)
Poster: Scott <##> scotophobn@aol.com To: Dan Subject: Re: Radiation..How? <##>Re: Radiation..How? Message: I was in a clinical trial at a hospital in Boston that involved an injection of the isotope dysprosium. Doctor Clement Sledge was the man in charge. They brought the injection to my room in a lead bucket & I couldn't leave the room, have visitors for more than a few minutes, or use the toilet for about a day. About two days after the procedure, my knee swelled up REAL BIG. I had it drained several times over the next few months. The kind doctor, when at last I got him on the phone, told me I must have had a 'bad reaction'. I received no relief from the injection; only pain, swelling, and a lab-rat's-eye view of the world. I can't recommend it. Return to Index
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Date: Sat, Sep 05, 1998 at 22:48:32 (EDT)
Poster: Help <##> To: Everyone Subject: synovitis Message: My grandmother recently began to receive painful aching and swelling in her knee. It is very painful for her to walk making it almost impossible to get around. I have i few questions that maybe with the answers help her. First of all is there a cure? Return to Index
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Date: Wed, Sep 02, 1998 at 20:16:54 (EDT)
Poster: Bruno Di Lullo <##> To: Dan Subject: Re: To wait, or not to wait? <##>Re: To wait, or not to wait? Message: After having had 5 surguries, I have decided to delay surgery until absolutley necessary. My surgeon agreed with my decision. I take medication on the really bad days, which really isn't that often. Return to Index
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Date: Wed, Sep 02, 1998 at 16:35:27 (EDT)
Poster: Lori G <##> To: Dan Subject: Re: Radiation..How? <##>Re: Radiation..How? Message: I am probably going to have some work done on my knee in the coming months for my PVNS. My Doctors are deciding if radiation is something that I need. I have read about a couple of the treatments here, but no one has mentioned how the procedure of radiation is done. Is it an injected isotope? Is it some kind of external beam, or field? is it painful during or after the procedure? Are the side effects similar to kemo-therapy for cancer? Does your hair fall out? do you get sick to your stomach? Anyway, you get the idea. I have had 4 surgeries in the past, so I know what to expect in that regard. The radiation has me a little nervous. Any info would be helpful. At the time of my treatments I was scared but hopeful. I only experienced a sunburn like burn towards the end of my treatments. There were a total of 15 treatments (external) this was the method of choice because I am thirty and the radioactive implants may cause genetic complications in future pregnacies. It was the after effect that have caused me great difficulties, swelling,pain,blistering, infection... which required hospitalization to control the infection. Return to Index
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Date: Wed, Sep 02, 1998 at 16:27:23 (EDT)
Poster: Lori G <##> To: Dan Subject: Re: To wait, or not to wait? <##>Re: To wait, or not to wait? Message: I just got back from a visit to my doctor. As expected, I need surgery again. He left the ball in my court as to the scheduling of surgery time. X-ray and MRI show that the cartilage and bone do not yet seem to be damaged, even after 17 years of PVNS. The doctor told me that a long delay in surgery could change that. My dilema is that the pain on most days is tolerable, and I have a lot of plans for the next three months. Does anyone out there know if delaying surgery will cause more damage, or should I wait intil the pain and immobility are intolerable? As I said, the pain is not bad right now, but I have an odd sensation in my knee that I can only describe as feeling like the joint is full of loose rubber bands (snap, crackle, pop, squish, etc.). My first impulse Dan was to tell you "DON'T WAIT", but then I thought, Hey how much damage is going to be done in a few months? I listened to my surgeons, until they told me upon awakening from my last surgery that it had been a sucess ,but they couldn't get it all, so they were sending me for radiation theraphy. Which I followed through, and now only four months after that series of treatments, have a whole new batch of complications... The dreaded infection, lost of skin sensitivity, thickening of the skin, and blisters. I get the bottom line of what I'm trying to say is that we all know that this disease keeps coming back, the recover and physiotheraphy are long and painful. Yet the only way I want to LIVE my life is to enjoy my healthy periods and try to plan my life to a certain degree around this disease,and the surgeries, and treatments it requires. It was in these healthy periods that I got married, had a son, and now am going nback to school. Good luck to you with your choices. Return to Index
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Date: Tues, Sep 01, 1998 at 19:47:21 (EDT)
Poster: Marilyn <##> RicochetEq@aol.com To: Dan Subject: Re: To wait, or not to wait? <##>Re: To wait, or not to wait? Message: Hi Dan, That's the $64,000.00 question..."to wait, or not to wait". I personally think that the bone damage is inevitable. If I were you, I'd go ahead with my 3 month other plans first and save surgery for later. You have to live life first and not let this outrageous disease control your life. I've had 5 surgeries as soon as the surgeon said "jump", and it hasn't preserved my bones...they are falling apart. As long as the pain is managable, I intend to keep away from the knife and do as much fun-stuff as I can! good luck... Return to Index
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Date: Tues, Sep 01, 1998 at 17:20:16 (EDT)
Poster: Dan <##> dkkrings@michsci.com To: Everyone Subject: To wait, or not to wait? Message: I just got back from a visit to my doctor. As expected, I need surgery again. He left the ball in my court as to the scheduling of surgery time. X-ray and MRI show that the cartilage and bone do not yet seem to be damaged, even after 17 years of PVNS. The doctor told me that a long delay in surgery could change that. My dilema is that the pain on most days is tolerable, and I have a lot of plans for the next three months. Does anyone out there know if delaying surgery will cause more damage, or should I wait intil the pain and immobility are intolerable? As I said, the pain is not bad right now, but I have an odd sensation in my knee that I can only describe as feeling like the joint is full of loose rubber bands (snap, crackle, pop, squish, etc.). Return to Index
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Date: Fri, Aug 28, 1998 at 14:02:50 (EDT)
Poster: Pauletta <##> To: Marilyn Subject: Re: The cycle begins again <##>Re: The cycle begins again Message: The whole cycle begins again tomorrow. I have an MRI scan in the morning, then I go for regular x-rays. I have an appointment with the surgeon on Sept. 15. I'm not expecting good news. In the past 2 week, my knee feels like it is coming disjointed with every step I take. I am wearing my brace all the time just to hold me together. I'm not ready to give up my life again to be a cut-and-paste dummy.... My proyers will be with you! I hope that your news won't be too bad. Keep us informed. Return to Index
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Date: Fri, Aug 28, 1998 at 01:41:08 (EDT)
Poster: Marilyn <##> RicochetEq@aol.com To: Everyone Subject: The cycle begins again Message: The whole cycle begins again tomorrow. I have an MRI scan in the morning, then I go for regular x-rays. I have an appointment with the surgeon on Sept. 15. I'm not expecting good news. In the past 2 week, my knee feels like it is coming disjointed with every step I take. I am wearing my brace all the time just to hold me together. I'm not ready to give up my life again to be a cut-and-paste dummy.... Return to Index
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Date: Thurs, Aug 27, 1998 at 10:11:30 (EDT)
Poster: Manuel <##> bettencourt.danka_op@t-online.de To: Dan Subject: Re: Radiation..How?<##>Re: Radiation..How? Message: In general Itrium is used for local injection. In case the reaction is positive your knee will become swollen and you should remain 24 hours horizontaly that it remains concentrated within the knee. I felt no particular pain but it might be necessary to extract liquid from your knee a few days later. The idea is to combat fire with an even stronger fire. This type of treatment can be done up to three times as there is some risk if the isotope penetrates on the bone or bone marrow and dosys are very small. I am keeping my right knee under control for the last two years after I went thorough this treatment. There isn´t much medicine can do for PVNS patients once no one dies and the number of people affected is very small. I had two surgeries and twice Itrum since Dec.90 and the next therapy will be combined : Open synovetomy, rehabilitation (4-6 weeks) and injection on top of it. If the problem is not solved with it, only an artificial can solve the problem for good. Return to Index
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Date: Wed, Aug 26, 1998 at 18:28:19 (EDT)
Poster: vicki <##> meiwente@ix.netcom.com To: Dan Subject: Re: How many of us are there <##>Re: How many of us are there Message: Sorry for filling up the message board, but I am very excited to find others that have the same condition that I have. I know that this is a rare problem. Does anyone know how rare? How many of us are there? I have rheumatoid arthritis and have just been diagnosed with PVS. It is in my shoulder and upper arm. I am an RN but have been unable to work for a couple of months. I am just now researching this disease and would appreciate any information anyone has to give. Return to Index
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Date: Wed, Aug 19, 1998 at 20:53:01 (EDT)
Poster: John Lu <##> j.lu@west.boeing.com To: Everyone Subject: Radiation(x-ray) -- too risky? Message: Hi Everyone, My wife Helen, 26, had an open synovectomy on her left knee about 6 weeks ago. Her PVNS was the diffuse form. The orthopedic surgeon suggests that she should receive radiation (x-ray) on that knee to, hopefully, prevent the PVNS from coming back. He said there were some good results from that. However, there is a small risk of cancer. We are trying to gather as much info as possible on whether to receive radiation or not. Can anyone offer any information on what your doctor has told you about the effectiveness of radiation and is it worth the risk of cancer? Any comments is greatly appreciated. -John Return to Index
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Date: Wed, Aug 19, 1998 at 20:32:55 (EDT)
Poster: John <##> j.lu@west.boeing.com To: Nadia Subject: Re: Re: Advice on post-surgery <##>Re: Advice on post-surgery Message: Hello, The best advice I can give you is to read EVERY one of the messages posted to this site, one by one, from the beginning. It takes a little time but it's worth it as it will give you answers to many of your questions. Also, you should realize and be encouraged by the fact that most of the people on this site have relatively extreme cases and there are more than likely countless silent others who we don't hear from because their disease did not recur or because it doesn't grow fast enough to be a real problem. I personally have had 3 scopes. I have been post-poning the open-knee for as long as possible becuase of the recovery time and the scar, etc. When I do have it done, it will probably be in conjunction with radiation treatment. I have actually heard very positive things about such treatments, especially in Boston. After you have read this site from the very beginning, and weeded out any questions it may answer, write me again and I will forward you contact information for a Dr. in Boston who answered many questions for me. Sincerely, Nadia Nadia, Can you forward to me the contact info for the Doctor in Boston? Also, did your doctor in Boston tell you whether the radiation(x-ray) works well in getting rid of PVNS? I guess is it worth the risk of getting cancer. I am currently considering whether my wife should receive the radiation or not! thanks so much, -John ps. What is your email address? Return to Index
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Date: Wed, Aug 19, 1998 at 16:37:39 (EDT)
Poster: Dan <##> dkkrings@michsci.com To: Amy Subject: Re: Re: Re: Radiation..How? <##>Re: Radiation..How? Message: Isn't there another type of Radiotherapy where they insert some type of crystals in your knee during arthroscopic surgery, though? Does anyone know what the side effects are from this type of proceedure? Is this the proceedure they do in Boston? If anyone has any information, please post it. I am looking at all my options seriously. Thanks! Amy in PA The type of radiation that you are referring to is not usually done on PVNS patients. This type of treatment requires the patient to remain in the hospital to avoid the risk to others from the radioactive field that is generated around you. My doctor told me that it is not unheard off, but the procedure is usually only used in last resort type situations, and where malignant cancerous tumors are present. If I am mis-informed,I would appreciate anyone out there telling me the real truth. Return to Index
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Date: Tues, Aug 18, 1998 at 14:09:12 (EDT)
Poster: Amy <##> To: Marilyn Subject: Re: Re: Radiation..How? <##>Re: Radiation..How? Message: Isn't there another type of Radiotherapy where they insert some type of crystals in your knee during arthroscopic surgery, though? Does anyone know what the side effects are from this type of proceedure? Is this the proceedure they do in Boston? If anyone has any information, please post it. I am looking at all my options seriously. Thanks! Amy in PA Return to Index
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Date: Sat, Aug 15, 1998 at 01:23:32 (EDT)
Poster: Marilyn <##> To: pat Subject: Re: hypertrophic synovium <##>Re: hypertrophic synovium Message: Hi Pat, It doesn't sound to me like you daughter has PVNS. Our disease is not a result of an injury. It is benign tumors growing in a joint area. It seems to favor knees. It is not cancer. I can be very disabling. Bone erosion is a very common and uncomfortable effect of PVNS. An MRI scan is a great diagnostic tool. Watch for words like tumor, leision, giant cell tumor. If you suspect Pigmented Villonodular Synovitis, I would suggest that you get to a large teaching hospital where research is done. This is a relatively rare disease and most doctors have never seen a real live case of it. Return to Index
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Date: Sat, Aug 15, 1998 at 01:13:27 (EDT)
Poster: Marilyn <##> RicochetEq@aol.com To: Dan Subject: Re: Radiation..How? <##>Re: Radiation..How? Message: Hi Dan, When I had radiation on my left knee, I went to the radiologist every day for 28 days (not the week-ends). I layed on a table and they aimed this x-ray type machine at my knee. When they had it where they wanted it, they all left the room and I layed still while the machine did it's thing. I don't remember exactly how long it took, but I'm thinking it was maybe a half minute. No pain involved, sort of like getting your picture taken. My leg got dark, like a suntan. Some people get a sunburn from it, I guess I was lucky. All of the hair in the area they radiated fell out. That part of my leg stayed "bald" for several years. My lower leg grew more than usual amounts of hair and it was darker, more like whiskers. I had this radiation done in 1994. My left knee is still slightly darker than the rest of me. That knee grow some hair, but not much. My lower leg is back to normal hair growth. I didn't get sick in any way, such as stomach upset. One complication that I did have was that I got blood clots in my leg during the course of radiation. I had just had surgery, so that may be why I got blood clots, but I really don't know if the radiation caused them or not. Prior to having the radiation, I had 4 surgeries, all about 6 months apart. The PVNS was growing rapidly and was getting way out of hand. After the radiation, the disease went into remission for about two and a half years. For me that was a long time. After my next surgery, I asked for radiation again, but my doctor said I'd had all they could safely give me without great risk of causing cancer. Now, just a year after my last surgery, My leg is full of tumors again and I'm looking at surgery in another month or so. I was grateful for the time that the radiation bought me, but it was not a cure, so I'm not really sure it was worth the risk. Good luck :-) Return to Index
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Date: Fri, Aug 14, 1998 at 13:30:58 (EDT)
Poster: Dan Krings <##> dkkrings@michsci.com To: Diane Subject: Re: Re: list of doctors <##>Re: list of doctors Message: There is some hope that the other pains that your daughter is having are not PVNS. The common limping that comes with knee PVNS is often a cause of stress on other joints of the body. Shoulder, hip, and neck pain are often relieved by a Chiropractor. occasional "adjustments" may be necessary. Return to Index
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Date: Fri, Aug 14, 1998 at 00:33:38 (EDT)
Poster: Diane <##> DBKeys@aol.com To: Dan Subject: Re: list of doctors <##>Re: list of doctors Message: There is a Dr. Brick at the Brigham and Women's Hospital in Boston that is supposed to have fairly good success at "curing" PVNS. See Nancy Schultz's discussion dated Wednesday, December 21, 1997 RE: Dr. Brick My daughter, who is now 25, has had PVNS since the age of 13. She other than the original exporatory surgery, she has never had an operation. Her knees have been hurting so bad that she finally got fed up and called the orthopedic surgeon who diagnosed the PVNS and has an appointment next week. I am really apprehensive as to what is going on, because originally only her left knee was involved, but the other knee and her shoulder hurts. It is possible that the PVNS is in these joints too. Please take care of yourself and I hope whatever you decide to do that it works out for the best for you. Return to Index
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Date: Mon, Aug 10, 1998 at 13:47:31 (EDT)
Poster: Dan <##> dkkrings@michsci.com To: Everyone Subject: Radiation..How? Message: I am probably going to have some work done on my knee in the coming months for my PVNS. My Doctors are deciding if radiation is something that I need. I have read about a couple of the treatments here, but no one has mentioned how the procedure of radiation is done. Is it an injected isotope? Is it some kind of external beam, or field? is it painful during or after the procedure? Are the side effects similar to kemo-therapy for cancer? Does your hair fall out? do you get sick to your stomach? Anyway, you get the idea. I have had 4 surgeries in the past, so I know what to expect in that regard. The radiation has me a little nervous. Any info would be helpful. Return to Index
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Date: Wed, Aug 05, 1998 at 12:04:27 (EDT)
Poster: pat <##> andelec@freeway.net To: Everyone Subject: hypertrophic synovium Message: Hi, I was tickled to find somewhere where if nothing else I could spout off. And if anyone can give suggestions I would be more than willing to listen. My 19 year old daughter was injured at work in april of 97 when she fell on her knee. This is the order of treatment for her injury. 1. sent to dr. he diagnosed "contusion" perscribed RICE treatment and sent her home. she was allowed to work the next day but could only work for a few hours until pain got unbearable. she was sent back to the dr. who then x-rayed knee, could find nothing on x-ray put her in an immobilzer and gave her work release until she saw specialist. they tried therapy and kept her in brace about 3 weeks. ater this was unsucessful he did an arthroscopy in Aug of 97. diagnosed chondromalacia patella. told my mother in law and me that the damage looks like it would look if someone scraped the cartliage of the end of a chicken bone with a fork. Did not take pictures of the athroscopy or debride or shave the damaged area. she continued to have problems. swelling and very bad brusing whenever she tried therapy or working. he said there was nothing more he could do. we then sought out another specialist who said she had a malalignment problem along with chondromalacia and he did a lateral release and a debridement of the patella damage that was left in. the operative report said she had a hypertrophic synovium almost suggestive of pigmented synovitis. I guess my main question is am I in the right catagory looking for any help or suggestions. Return to Index
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Date: Tues, Aug 04, 1998 at 14:35:50 (EDT)
Poster: Amy <##> mattress@mail.microserve.net To: Amy Subject: Re: Re: Re: Advice on post-surgery <##>Re: Advice on post-surgery Message: Please forward the Boston information to me. I had my surgery just over 3 months ago & my doctor is talking about going in again in a few months. I want to make sure it's done right. Thanks! ~~~Amy :-) Please note the change in my e-mail address. Return to Index
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Date: Tues, Jul 28, 1998 at 17:59:35 (EDT)
Poster: Jim Morrison <##> morrisja@jnlk.com To: Dan Subject: Re: How many of us are there <##>Re: How many of us are there Message: The only figure that I have actually seen concerning the amount of PVNS is an estimated annual incidence of 1.8 cases per million population. This report was from 1941. I would assume that this rate is higher today. Return to Index
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Date: Mon, Jul 27, 1998 at 19:13:11 (EDT)
Poster: Dan <##> dkkrings To: Everyone Subject: How many of us are there Message: Sorry for filling up the message board, but I am very excited to find others that have the same condition that I have. I know that this is a rare problem. Does anyone know how rare? How many of us are there? Return to Index
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Date: Mon, Jul 27, 1998 at 19:02:26 (EDT)
Poster: Dan <##> dkkrings@michsci.com To: Everyone Subject: list of doctors Message: Quick question: Is there a list of doctors that are at least familiar with this disease. My last surgery was performed by Dr. Mark Carlson at the Northland Clinic in Duluth, Minnesota. I made it ten years without a need for a "tune-up". From the stories that I have read here, that is pretty good. I now live in Michigan, and would like to find a good doctor within 300 miles. I have recently started having problems again, and need to go and see someone. Thanks - Dan Return to Index
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Date: Mon, Jul 27, 1998 at 18:56:26 (EDT)
Poster: DanKrings <##> dkkrings@michsci.com To: Nadia Subject: Re: Okay here goes... <##>Re: Okay here goes... Message: I just found this web site, and I am now thoroughly depressed by all of the bad news that I am seeing. i thought that I was the only one who was having these problems. Anyway, I thought I might respond to your questions from my experience. 1. My doctor told me that a signal that there was bone damage was a change in the "normal" pain that I was feeling. I have heard that persistant aching pain turns to an urgent sharp pain. I hope I never find out. 2. i have not heard if there is always invasion into the bone. Has anyone? 3. several people have mentioned grapefruit size swelling. I can tell you that you can count yourself lucky. At its worst point, My knee was over 20 inches in circumference. The swelling has gone down some, but has never really gone away. By the way, i have a question of my own. Has anyone seen their knee become deformed from this disease? Mine has developed some lumps and bumps that don't seem to make any sense. Hope your recovery is going well. - Dan Return to Index
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Date: Sun, Jul 26, 1998 at 15:26:34 (EDT)
Poster: Phil spiegel <##> Ckspiegel@aol.com To: Rosemary Subject: Re: It's back <##>Re: It's back Message: Sorry to hear about your continuing difficulties. My orthopedic surgeon feels very strongly that arthroscopic is preferable. He used RF radiation during the arthroscopic procedure on my knee 3 months ago. I was recovering very well until I had a bike accident a month ago, landing on both knees. This reactivated an osteoarthritic condition in my affected knee, but that's another story. Good luck. Return to Index
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Date: Sun, Jul 26, 1998 at 00:42:32 (EDT)
Poster: Dave <##> dsilver@delnet.net To: John Lu Subject: Re: Advice on post-surgery<##>Re: Advice on post-surgery Message: Hi! I had PVNS tumors removed from both of my knees back in the early 1970's using the open synovectomy approach. I'm assuming I had the non-diffuse variety because the tumors have never returned and there's no swelling. I do have osteo-arthritis, though (I'm only 35), and my knees don't bend more than about 90 degrees. I keep the arthritis at bay by swimming five miles a week - it does seem to help! Good luck to you and especially to your wife :) Dave Return to Index
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Date: Sat, Jul 25, 1998 at 16:19:59 (EDT)
Poster: Dan <##> dkkrings@michsci.com To: Everyone Subject: Exercise and Biking Message: I had my first occurrance of PVN when I was 14 years old. I am now 28 and have had three arthroscopic surgeries and one open surgery. The last surgery was over 10 years ago. I thought that I had gotten rid of the problem, or at least minimized it. I have found that regular exercise of my knee has helped reduce the frequency and the severity of the swelling and pain that I am sure you have all experienced. However, I have recently seen a reversal of this trend. When I spend time biking or doing other strenuous knee exercise, I now have to spend two or three days recovering. I am not sure if this means I should exercise the joint more, or less. Anyone else had this happen to them? Return to Index
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Date: Fri, Jul 24, 1998 at 14:48:46 (EDT)
Poster: Amy <##> emporuim@mail.microserve.net To: Nadia Subject: Re: Re: Advice on post-surgery <##>Re: Advice on post-surgery Message: Please forward the Boston information to me. I had my surgery just over 3 months ago & my doctor is talking about going in again in a few months. I want to make sure it's done right. Thanks! ~~~Amy :-) Return to Index
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Date: Fri, Jul 24, 1998 at 14:02:53 (EDT)
Poster: Rosemary <##> Rosemarmax@aol.com To: Everyone Subject: It's back Message: Had 3rd knee surgery on July 16. PVNS did not show up on MRI - I was actually going in to have some torn cartlege removed. The doctor said he found small areas of inflamation (PVNS) throughout the joint, but joint itself appeared to be healthy. He cleaned up what he could reach. He seemed to think that this would hold me for awhile. I asked about an open knee synovectomy - he is not an advocate of the procedure. Maybe less invasive is better? Opinions on this must really differ. My last doctor said after two or three arthroscopic, open knee was definitely warranted. Anyone else getting this kind of conflicting information? Return to Index
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Date: Thurs, Jul 23, 1998 at 12:13:07 (EDT)
Poster: Drew In NJ <##> kb2seo@yahoo.com To: megan Subject: Re: post surgery complications <##>Re: post surgery complications Message: Just to Clarify: Dr.Lenahan is the Medical Examiner for ACUPUNCTURE in NJ, My error on the first message. I don't want to convey anything other than this...Sorry for the slip! Return to Index
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Date: Thurs, Jul 23, 1998 at 12:08:03 (EDT)
Poster: Drew In Nj <##> kb2seo@yahoo.com To: megan Subject: Re: post surgery complications <##>Re: post surgery complications Message: as specified in earlier communications, i am a long term sufferer of pvns. i have had five open synovectomies all of which have been unsuccessful because the tumor has always frown back.. unfortunately the last operation needed incisions in the back and the front of the knee. i have now been left with a condition called foot drop, and even though i had been assured by my surgeon that this condition was only temporary (the surgery was 18th march 1998) i would regain the use of my foot, i have since had a scan to estimate the extent of nerve damage, i have been told by the neurologist that two nerves have been damaged and in his opinion it is highly unlikely that i will get the use of my foot back, as you can imagine i am well and trully devastated, i can do less now than i could before. it has also created severe arthritis in my hip joints because of my inability to walk properly, and also arthritis in the pvns affected knee joint. i have been told that physio will not help me at all. i now have a wheelchair because i cannot walk very far, i am permanently on crutches and feel like a wreck. my advise is to be very careful, when thinking about surgery. Hey Megan! soory to hear of the problem. I go in for Arthroscopy to repair meniscus tomorrow,24th of July. I had a proceedure done in 93 which killed most of the feeing in the area just below the knee on the "Outboard side" The only thing I could even detect was dull throbbing from time to time. (Usually swelling there.) I had really good results from a Acupuncturist Named Robert Lenahan . He's in Point Pleasant NJ and he is the Medical Examiner for the State of NJ. He may be able to refer you to a person with the skills needed for your help. It did wonders for me. e-Mail me , and I'll be happy to provide you with his Number or address.....Good Luck, Try to keep your spirits up. Return to Index
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Date: Tues, Jul 21, 1998 at 18:28:06 (EDT)
Poster: CIndy <##> pfcg@cyberus.ca To: megan Subject: Re: post surgery complications <##>Re: post surgery complications Message: That must be so hard to deal with..I have had 4 surgeries, the last being the open syn., but the surgeon opted not to go into the back of the leg as well, though I still have PVNS there...I guess my result could have been the same as yours. I have gone through some serious depression over the past few months as a result of this, so I can imagine you must be feeling very low as well. My advice is to see a GP or counsellor for some support..reaching out may help..I wish you ALL the best..:) My thoughts are with you. Return to Index
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Date: Fri, Jul 17, 1998 at 01:32:25 (EDT)
Poster: Marilyn <##> To: megan Subject: Re: post surgery complications <##>Re: post surgery complications Message: That's awful...and scary for all of us. I don't know what to say to help you, but our thoughts and prayers are with you. I've had 5 surgeries, twice on the back side, and have lost a lot of feeling in my leg and I don't walk well, but I really have kept my eyes closed to the idea of not walking again. Return to Index
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Date: Wed, Jul 15, 1998 at 20:09:23 (EDT)
Poster: megan <##> mratcl@aol.com To: Everyone Subject: post surgery complications Message: as specified in earlier communications, i am a long term sufferer of pvns. i have had five open synovectomies all of which have been unsuccessful because the tumor has always frown back.. unfortunately the last operation needed incisions in the back and the front of the knee. i have now been left with a condition called foot drop, and even though i had been assured by my surgeon that this condition was only temporary (the surgery was 18th march 1998) i would regain the use of my foot, i have since had a scan to estimate the extent of nerve damage, i have been told by the neurologist that two nerves have been damaged and in his opinion it is highly unlikely that i will get the use of my foot back, as you can imagine i am well and trully devastated, i can do less now than i could before. it has also created severe arthritis in my hip joints because of my inability to walk properly, and also arthritis in the pvns affected knee joint. i have been told that physio will not help me at all. i now have a wheelchair because i cannot walk very far, i am permanently on crutches and feel like a wreck. my advise is to be very careful, when thinking about surgery. Return to Index
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Date: Fri, Jul 10, 1998 at 10:21:10 (EDT)
Poster: Delsey <##> dmsheril To: Everyone Subject: Lipoma arborescens Message: I am looking for info on lipoma arborescens, a disorder which, like PVNS, can cause chronic swelling of the knee due to abnormal tissue growth, and is treated by complete removal of the synovium. It is somewhat rarer than PVNS, and I haven't found any homepages or newsgroups dedicated to it, which is why I'm writing here. I've had one surgery already, and am facing the prospect of a second synovectomy. Even after that my doctor says there's a pretty good chance for recurrence. I'd really like to hear from others with this condition, and to find out if there are other approaches to treatment, and if anyone out there has studied its causes. Thanks, Delsey Return to Index
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Date: Thurs, Jul 09, 1998 at 00:56:51 (EDT)
Poster: Nadia <##> To: John Lu Subject: Re: Advice on post-surgery <##>Re: Advice on post-surgery Message: Hello, The best advice I can give you is to read EVERY one of the messages posted to this site, one by one, from the beginning. It takes a little time but it's worth it as it will give you answers to many of your questions. Also, you should realize and be encouraged by the fact that most of the people on this site have relatively extreme cases and there are more than likely countless silent others who we don't hear from because their disease did not recur or because it doesn't grow fast enough to be a real problem. I personally have had 3 scopes. I have been post-poning the open-knee for as long as possible becuase of the recovery time and the scar, etc. When I do have it done, it will probably be in conjunction with radiation treatment. I have actually heard very positive things about such treatments, especially in Boston. After you have read this site from the very beginning, and weeded out any questions it may answer, write me again and I will forward you contact information for a Dr. in Boston who answered many questions for me. Sincerely, Nadia Return to Index
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Date: Wed, Jul 08, 1998 at 16:42:50 (EDT)
Poster: Marilyn <##> BigBoyT1@aol.com To: John Lu Subject: Re: Advice on post-surgery <##>Re: Advice on post-surgery Message: Welcome to our little club! I suppose we all react a little differently, but I think you will find that the swelling never goes away, the walk is always a little funny, getting worse after each surgery, and it takes a lot of hard work to get the knee to bend again. Open surgery is better than an arthroscopic surgery because the surgeon can cut out more of the bad stuff. The down-side is that recovery time is longer and more swelling and stiffness occur. Radiation can retard future tumor growth, but it comes with the possible side effect of causing cancer. It should be noted that radiation does not stop the disease. It does come back! CPM machines are a deivce that is strapped to your leg, right after surgery, and you keep your leg in it while you are in bed. It raises and lowers your leg, bending the knee. The degree of bend is increased each day. The more hours you spend in the CPM machine the better the results. I think the idea is that scar tissue can't build up around the joint if it is constantly moving. Physical Therapy, and lots of it, helps greatly. If you can't get it from a therapist, I would suggest a 20 minute hot pack before exericising, do some bending exercises, ride a stationary bike for about 20 minutes (even if you can't get the pedal all the way around the circle, just rock it back and forth), and finish off with a 10 minute ice pack. Good luck! Return to Index
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Date: Tues, Jul 07, 1998 at 18:37:22 (EDT)
Poster: John Lu <##> Luhelen98@aol.com To: Everyone Subject: Advice on post-surgery Message: Hello Everyone, My wife, 26, had her surgery (8" incision on the front of her left knee) two weeks ago and the surgeon removed the tumor. The finding was PVNS. She had a dislocation of the left kneecap back in '91 and later another subluxation a few years later. From what I read there's some kind of relationship between trauma and PVS. Can anyone offer some advice on how to bend the knee while having all that stiffness and swelling? Is it just gradually forcing it to bend? How long does it take for the swelling to go down completely? After surgery, how long did it take for anyone to begin walking normally? Also, what is the CPM machine? Does anyone have an opinion on how effective radiation is in preventing recurrence? Is it true that Diffuse form has a higher chance of recurrence than the nodular form? Why is arthroscopic synovectomy done if open knee synovetomy can really open the knee up and remove as much of the tumor as possible? I appreciate any replies or emails? Thanks again, Glad to have found this site. -John Return to Index
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Date: Thurs, Jul 02, 1998 at 08:57:54 (EDT)
Poster: Pauletta Nixon <##> jrpn@juno.com To: Jim Morrison Subject: Re: Ganglion Cyst & PVNS <##>Re: Ganglion Cyst & PVNS Message: I've just been diagnosed with a ganglion cyst in my left knee in which I have had four operations to remove PVNS over the last fourteen years. About three months ago I noticed this lump growing on the side of my knee. Of course you can never be sure that it isn't PVNS until a biopsy has been performed. Has anyone else ever had a ganglion cyst in a diseased joint? Take Care, Jim I've have a cyst on my knee also. I have had surgery on this knee 3 times. There is a "growth" of some kind in that knee also (seperate from the cyst). The doctor is not sure what it is. During my last surgery they could not get to it. They are going to do an MRI and inject my knee with dye. If the dye reaches the "growth" then he will do a seperate authrscopic surgery to remove the "growth". If the dye doesn't reach the "growth" then he will consider open knww surgery from the back to remove it! Oh waht joy! Isn't this disease fun to have! Return to Index
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Date: Thurs, Jul 02, 1998 at 02:02:52 (EDT)
Poster: Marilyn <##> To: Jim Morrison Subject: Re: Ganglion Cyst & PVNS <##>Re: Ganglion Cyst & PVNS Message: My Goodness, Jim! Isn't PVNS enough for you? My docs have never said "ganglion cyst", but they have said "giant cell tumors". I wonder if those words are all a part of PVNS...just different terms. I hope this isn't something more serious. Good Luck! Return to Index
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Date: Wed, Jul 01, 1998 at 17:26:12 (EDT)
Poster: Jim Morrison <##> morrisja@jnlk.com To: Everyone Subject: Ganglion Cyst & PVNS Message: I've just been diagnosed with a ganglion cyst in my left knee in which I have had four operations to remove PVNS over the last fourteen years. About three months ago I noticed this lump growing on the side of my knee. Of course you can never be sure that it isn't PVNS until a biopsy has been performed. Has anyone else ever had a ganglion cyst in a diseased joint? Take Care, Jim Return to Index
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Date: Tues, Jun 30, 1998 at 13:40:05 (EDT)
Poster: Bruno Di Lullo <##> To: Cindy Subject: Re: OUCH!!!! <##>Re: OUCH!!!! Message: I had my knee manipulated 2 weeks after surgery because I only had 30 degrees bend in my knee following surgery. The doctor would only do this if I agreed to be put under anestisic. I am glad I agreed. I had a long recovery. I think what worked best for me is the stationery bike at home. I tried the warm pool at the hospital but this onlt swelled up my knee more. I really beleive the bicyle is the best exercise. Good Luck and don't give up! Return to Index
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Date: Tues, Jun 30, 1998 at 13:39:48 (EDT)
Poster: Bruno Di Lullo <##> To: Cindy Subject: Re: OUCH!!!! <##>Re: OUCH!!!! Message: I had my knee manipulated 2 weeks after surgery because I only had 30 degrees bend in my knee following surgery. The doctor would only do this if I agreed to be put under anestisic. I am glad I agreed. I had a long recovery. I think what worked best for me is the stationery bike at home. I tried the warm pool at the hospital but this onlt swelled up my knee more. I really beleive the bicyle is the best exercise. Good Luck and don't give up! Return to Index
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Date: Tues, Jun 30, 1998 at 09:39:32 (EDT)
Poster: Drew In NJ <##> kb2seo@yahoo.com To: Cindy Subject: Re: OUCH!!!! <##>Re: OUCH!!!! Message: So, 5 wks after surgery, I had little flexion in my knee. So, it was decided that I would go back in for another week or so, be put on epidural for pain control so the knee could be manipulated. Sadly enough, the 2 epidurals fell out!! And I had a complete closed manipulation - talk about pain. Its been long and hard, and I have nowhere near the mobility I used to have. Besides a CPM, is there anyone who has ideas on what I can do to help with pain/range of motion?? HElp!! Hi Cindy, I have had Multiple surgeries on the right Knee for torn cartilage and Fulkerton's proceedure. I found PT in a ARK(arc?) TANK worked wonders. the water in the tank provided resistance, The harness suspended you and the Water is warm.The Lack of gravity in the tank was a welcome plus....Check it out! Return to Index
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Date: Mon, Jun 29, 1998 at 11:13:48 (EDT)
Poster: Marilyn <##> To: Cindy Subject: Re: OUCH!!!! <##>Re: OUCH!!!! Message: Lots of Physical Therapy! After each surgery, I went to PT 3 times a week of 2-3 months. They applied heat before exercise and cold at the end. Also I exercised at home...a stationery bike is good. I don't think that mobility will ever be as good after surgery as before surgery, but attitude and drive are your best help. Good luck! Return to Index
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Date: Thurs, Jun 25, 1998 at 22:52:45 (EDT)
Poster: Cindy <##> pfcg@cyberus.ca To: Everyone Subject: OUCH!!!! Message: So, 5 wks after surgery, I had little flexion in my knee. So, it was decided that I would go back in for another week or so, be put on epidural for pain control so the knee could be manipulated. Sadly enough, the 2 epidurals fell out!! And I had a complete closed manipulation - talk about pain. Its been long and hard, and I have nowhere near the mobility I used to have. Besides a CPM, is there anyone who has ideas on what I can do to help with pain/range of motion?? HElp!! Return to Index
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Date: Mon, Jun 22, 1998 at 23:09:50 (EDT)
Poster: Jim Morrison <##> morrisja@jnlk.com To: B.P. Smyth Subject: Re: Synovitis - knees/ankles <##>Re: Synovitis - knees/ankles Message: I am forty-eight and have had PVNS for fourteen years in my left knee. I do experience a giving out of my knee when I am on it a lot, but not at the point where I fall over. I also have difficulty stopping if someone cuts in front of me. That kind of throws me off balance. Return to Index
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Date: Mon, Jun 22, 1998 at 21:37:35 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: Josh Subject: Re: hereditary?? <##>Re: hereditary?? Message: I, too, worried about my children having this disease. I wrote to Dr. D.J. Olgilvie-Harris, Chief of Orthopaedic Surgery in Toronto Canada. (He had been written up in the American Journal of Medicine re: a PVNS study) His reply to that question was, "To my knowledge, there are no known cases in which it has been hereditary. Your children, therefore, are not at risk." Return to Index
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Date: Mon, Jun 22, 1998 at 21:30:53 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: B.P. Smyth Subject: Re: Synovitis - knees/ankles <##>Re: Synovitis - knees/ankles Message: My left knee has PVNS. If I take long steps, my knee buckles and I have fallen down several times. By taking shorter steps I can usually feel the joint buckling and catch myself before I go down. Sometimes I use a cane if I am trying to go very far or if my knee feels wobbly on that particular day. I am 44 years old and have had PVNS since 1991, including 5 surgeries and radiation therapy. Return to Index
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Date: Mon, Jun 22, 1998 at 12:55:38 (EDT)
Poster: Josh <##> jspark31@portland.maine.edu To: Everyone Subject: hereditary?? Message: I have had PVNS for a while now(diagnosed for 10 yrs) and have recently found my girlfriend is pregnant. does anyone have any info on how hereditary this could be, if at all??? Return to Index
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Date: Sun, Jun 21, 1998 at 01:04:42 (EDT)
Poster: S. Steele <##> stephen_steele@sfu.ca To: Everyone Subject: yttium-90 Message: Warm Greetings Fellow Sufferers, Have any of you gone the route of yttium-90? Return to Index
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Date: Sat, Jun 20, 1998 at 23:18:55 (EDT)
Poster: sandy dodd <##> sjdodd@aol.com To: Everyone Subject: toxic synovitis?? Message: has anyone ever heard of "toxic synovitis?" my son just turned 3, and the doctor wants to rule this out. he is having pain in his right hip, particularly when he gets up in the morning or after a nap, or after coming out of his car seat. after a while, it seems ok, or at least, he begins walking more normal. has anyone ever heard of this? i have heard only of this possibility by a doctor who has sent me to a specialist (monday) and online, i have only found transient synovitis and this site. thanks for any help! Return to Index
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Date: Sat, Jun 20, 1998 at 09:33:33 (EDT)
Poster: B.P. Smyth <##> b.smyth@virgin.net To: Everyone Subject: Synovitis - knees/ankles Message: HI, I WOULD BE REALLY INTERESTED TO KNOW IF SOME PERSON WITH THE SYNOVITIS HAS THE SAME PROBLEM AS MYSELF. MY KNEES AND ANKLES GIVE WAY AND EVEN THOUGH I AM ONLY IN MY FORTIES - I FEEL IT BEST TO HAVE THE WALKING-STICK CLOSE AT HAND?? ALL THE BEST - BRIAN Return to Index
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Date: Thurs, Jun 18, 1998 at 01:11:48 (EDT)
Poster: Phil Spiegel <##> phil.spiegel@amd.com To: Everyone Subject: Hyalgan anyone? Message: In addition to PVNS my left knee has primary osteoarthritis. I am considering Hyalgan injections (five spaced a week apart that should give relief for six months). My doctor doesn't know if anyone with PVNS has had Hyalgan injections and suggested that I ask if anyone in this forum could share their experience. Thanks. Return to Index
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Date: Fri, Jun 12, 1998 at 12:38:33 (EDT)
Poster: Drew in NJ <##> kb2seo@juno.com To: Everyone Subject: Just got the Diagnosis Message: hi everyone.It's nice to find a page on the Net with some USEFUL information.I was injured a few years ago,the darn surgery never seemed to help,keep tearing meniscus. The MRI found the cyst on the Left knee....But I have no pain. Is this common? is it one of these things that come and go? Scary stuff....I get the impression this ain't gonna be a picnic.....Any thought or Idea welcomed Return to Index
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Date: Sat, Jun 06, 1998 at 19:32:03 (EDT)
Poster: Diane <##> DBKeys@aol.com To: Amy Subject: Re: Specialists & diffuse or nodular? <##>Re: Specialists & diffuse or nodular? Message: Do any of you know any PVNS specialists in the Pittsburgh (Ohio or Pennsylvania) area? I am finding that my doctor knows less than what I thought he did. He did my surgery (April '98), but was unable to tell me whether my PVNS was the diffuse or nodular form. What are the physical differences between the two? I know that the diffuse form has a higher rate of recurrence. Please advise. Also if you know any specialists in my area. There are very few doctors who specialize in PVNS. See Nancy Schultz's "Boston Follow-Up" in this discussion section. She has been treated by Dr. Brick of Brigham and Women Hospital near Boston. He seems to have the best success rate of any doctor in the country. I feel for you. There are no doctors in our area that have a clue about PVNS although they will all tell you they do! Good luck to you !!! Return to Index
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Date: Wed, Jun 03, 1998 at 16:45:46 (EDT)
Poster: Amy <##> To: Everyone Subject: Specialists & diffuse or nodular? Message: Do any of you know any PVNS specialists in the Pittsburgh (Ohio or Pennsylvania) area? I am finding that my doctor knows less than what I thought he did. He did my surgery (April '98), but was unable to tell me whether my PVNS was the diffuse or nodular form. What are the physical differences between the two? I know that the diffuse form has a higher rate of recurrence. Please advise. Also if you know any specialists in my area. Return to Index
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Date: Wed, Jun 03, 1998 at 09:46:03 (EDT)
Poster: Joerg Sichler <##> js@mediacom.de To: Susan Scott Subject: Re: left hip pvns<##>Re: left hip pvns Message: Hi Susan, I'm 36 years old and I had (have?) PVNS in my left hip too: Synovectomy in September 97 (but "only" 9 inch incision), physical therapie until March'98, Radiotherapy in Nov'97 (Rhenium-Sulfit is injected in the hip joint to kill the rest of the Synovia.) Unfortunately my left femural head is very destroyed so I had (and have) pain and need drugs (dyclofenac, in germany: voltaren). My doctos say I need a Total Hip Replacement in the next months ... years ... So I cannot tell you how long it takes until the desease comes back ... Thanks for the website! Return to Index
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Date: Mon, May 18, 1998 at 19:56:07 (EDT)
Poster: Diane <##> DBKeys@aol.com To: Lori Subject: Re: Re: Re: related disorders <##>Re: related disorders Message: Hi Rosemary and Diane! I was diagnosed w/PVNS 4-5 years ago. I had an arthroscopy for a torn cartilage (the 2nd time in that knee), a few weeks later the lab found that I had PVNS. I had an arthroscopic synovectomy and later went to Brigham& Women's for radiation treatment (dysprosium). I've had no problem since, but developed Psoriatic arthritis a few year's ago. (I've never really developed psoriasis, but may have had a leison or 2) I've wandered if it had to do w/the radiation-could psoriasis and PVNS be related, auto- immune diseases??? Lori It really seems strange that psoriasis and PVNS seem to be related. I believe it may be a deficiency in the systems of PVNS sufferers. Wouldn't it be great to discover the missing links to help suffers? Anyone else out their who suffers from psoriasis? Would be interesting to know. Return to Index
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Date: Mon, May 18, 1998 at 11:26:42 (EDT)
Poster: Lori <##> To: Diane & Rosemary Subject: Re: Re: related disorders <##>Re: related disorders Message: Hi Rosemary and Diane! I was diagnosed w/PVNS 4-5 years ago. I had an arthroscopy for a torn cartilage (the 2nd time in that knee), a few weeks later the lab found that I had PVNS. I had an arthroscopic synovectomy and later went to Brigham& Women's for radiation treatment (dysprosium). I've had no problem since, but developed Psoriatic arthritis a few year's ago. (I've never really developed psoriasis, but may have had a leison or 2) I've wandered if it had to do w/the radiation-could psoriasis and PVNS be related, auto- immune diseases??? Lori Return to Index
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Date: Sun, May 17, 1998 at 10:04:37 (EDT)
Poster: Ken <##> kberke@earthlink.net To: Nadia Subject: Re: Okay here goes... <##>Re: Okay here goes... Message: Nadia, hope your recovering nicely. I've had pvns since 1984, or at least, that's when I noticed it.I've never had surgery. Like you, it's my left knee; no pain; grapefruit size swelling. I've had xrays and CT Scans. Minimal damage to bone. I can still exercise. Low back pain is more of a limiting factor in exercise than the knee. I'm wondering what made you decide to have the operation. Apparently not pain. Ken New Orleans Return to Index
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Date: Sun, May 17, 1998 at 09:58:29 (EDT)
Poster: Ken <##> kberke@earthlink.net To: Cindy Subject: Re: Back home, Recovering!! <##>Re: Back home, Recovering!! Message: I just found this forum, Cindy and read your message. Hope you're comfortable. I've been thinking about the open knee operation for 14 years now, but have avoided it so far. I can ride a bike and don't have pain. The worst of it is swelling and weakness. I'm hoping to read here messages from someone with a case like mine who had permanent relief from surgery. If such success were common, I'd maybe have the operation. What's a CPM machine, if you don't mind my asking. You mentioned it in your message as a device that helps you get your knee to bend. Return to Index
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Date: Sat, May 16, 1998 at 22:27:57 (EDT)
Poster: Ken <##> To: Diane Subject: Re: Need Opinions <##>Re: Need Opinions Message: A doctor here in New Orleans and one in Columbus Georgia diagnosed my swelling left knee problem in 1984. The one in Columbus discouraged surgery, as long as I was getting along okay. I'm still getting along okay. Getting along, until very recently, meant running five miles a day. I cut that down to three and very recently started bike riding instead of running. The running effects my back more than my knee. I've been tempted to have surgery several times. Would be nice to get rid of this big knee. Yet, as long as I'm not in pain and can exercise, I figure avoid the knife. Stretching has helped a lot. Twice a day I get on the floor and bend over both knees. This little ten-minute routine twice a day has made a difference in the way I walk down stairs and bend over a sink to brush to teeth. Early on I had injections for the condition. The relief was immediate, but temporary. Hope this helps, and hope your daughter manages her condition well. Return to Index
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Date: Sat, May 16, 1998 at 15:06:25 (EDT)
Poster: Bruno Di Lullo <##> To: Cindy Subject: Re: Back home, Recovering!! <##>Re: Back home, Recovering!! Message: I cheated by not using the CPM machine as often as I should have and as a result I had to be put under general anestetic 2 weeks later to get them to break my scar tissue which prevented me from bending my knee beyond 35 degrees. Stay on that machine as long as you can tolerate it. Good Luck Return to Index
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Date: Fri, May 15, 1998 at 08:03:54 (EDT)
Poster: Pauletta <##> To: Amy Subject: Re: Rehabilitation/Physical Therapy <##>Re: Rehabilitation/Physical Therapy Message: Hello, everyone! I am a 27 yr old female & I found this internet site a few weeks ago & have found your stories very interesting. I was just diagnosed with PVNS of my left knee 3 weeks ago after my first partial arthoscopic synovectomy on April 14, 1998. My knee had been swollen for about 3 years with fluctuating pain before it turned into constant pain that made it difficult to move. I had even been doing step aerobics for 1 1/2yrs until my knee got real bad in January. My question is concerning rehabilitation. My knee still does not have full range of motion, stiffness, sometimes locking, & it is even very sensitive sitting down. How far along should I be, having had my surgery 4 weeks ago? I started taking Glucosamine & Condroitin in February. The thoughts of repeated surgeries concerns me. Everyone's recovery time is different, but with my last surgery it took me about 2 - 3 months before my range of motion to improve and the stiffness to get better. Are you doint physical therapy? If not talk to your Dr about it. It will help alot! Hope things get better for you. Return to Index
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Date: Thurs, May 14, 1998 at 23:26:25 (EDT)
Poster: Susan Scott <##> senoras@aol.com To: Everyone Subject: left hip pvns Message: I am a 37 year old female with pvns in my left hip. I had a radical synovectomy in December which involved removing my left leg from the hip joint completely in order to scrape out the synovium. This left me with a 12 inch incision going down my hip and leg. The recovery was quite difficult and I had several months of physical therapy in order to walk more or less normally again. I am now experiencing pain again and am wondering if others with pvns in the hip could respond and let me know how long it took for the disease to recur for them. I go back to the doctor in several weeks for tests to see if it's back. Thanks... Return to Index
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Date: Thurs, May 14, 1998 at 17:19:17 (EDT)
Poster: May Everaert <##> everaert@yucom.be To: scott Subject: Re: speed <##>Re: speed Message: If your sister has the nodular type of PVS it is important to know that the nodular type is easyer to remove (hopefully completely). The condition could be monitored by regular MRI, this would detect new growth. I think it is very important to inform yourself and find a doctor who is willing to learn and search. Return to Index
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Date: Thurs, May 14, 1998 at 14:29:41 (EDT)
Poster: Amy <##> To: Everyone Subject: Rehabilitation/Physical Therapy Message: Hello, everyone! I am a 27 yr old female & I found this internet site a few weeks ago & have found your stories very interesting. I was just diagnosed with PVNS of my left knee 3 weeks ago after my first partial arthoscopic synovectomy on April 14, 1998. My knee had been swollen for about 3 years with fluctuating pain before it turned into constant pain that made it difficult to move. I had even been doing step aerobics for 1 1/2yrs until my knee got real bad in January. My question is concerning rehabilitation. My knee still does not have full range of motion, stiffness, sometimes locking, & it is even very sensitive sitting down. How far along should I be, having had my surgery 4 weeks ago? I started taking Glucosamine & Condroitin in February. The thoughts of repeated surgeries concerns me. Return to Index
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Date: Thurs, May 14, 1998 at 14:21:24 (EDT)
Poster: Pauletta Nixon <##> To: scott Subject: Re: speed <##>Re: speed Message: Every time I have needed surgery (3 times) the Dr has put it off as long as I could tolerate the pain and limping. It does nat appear to have had any adverse impact. I had my last surgery in Oct 97 and had a growth that the Dr could not reach, and I am currently waiting to find out if he is going to do surgery again this summer. He is trying to decide if he should do athroscopic or open surgery. If he opts for open knee surgery it will be done from the back! I hope he does not decide to do the open knee surgery! I live in Cincinnati, OH and would be willing to talk to your sister on the phone. I am 42 years ole and have had PVNS for 4 years. Return to Index
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Date: Thurs, May 14, 1998 at 12:04:41 (EDT)
Poster: scott <##> To: Everyone Subject: speed Message: I know this is a very difficult question to answer, but I was wondering how important speed is in scheduling a surgery. As I mentioned the other day, my sister was recently diagnosed and apparently does not have diffuse involvement. She wonders if she can wait a few months to have the surgery done if she can tolerate the symptoms. I know PVNS is characterized as slow growing; will the few months likely make a difference. Any opinions would be most appreciated. Scott Return to Index
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Date: Thurs, May 14, 1998 at 10:27:16 (EDT)
Poster: Rosemary <##> To: Marilyn Subject: Re: SSI<##>Re: SSI Message: After all these months, I finally got a letter today from Social Security stating that I was turned down for benefits. I had heard that you could expect to be turned down the first try, but it was still disappointing when I opened the envelope. I'm open for suggestions from anyone else who either has been approved or turned down by Soc. Sec. I'm wondering if I need to get an attorney at this point or just file more papers myself? Any suggestions???? HELP! I know this response is a bit late..hope you see it. My husband applied for & was turned down for S.S. after a car accident left him with 3 bulging discs in his neck/upper back. I believe that S.S. advocates vocational retraining. After turning down his claim, they directed my husband to all sorts of services/funding in order for him to return to school and retrain in a different line of work. Return to Index
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Date: Wed, May 13, 1998 at 17:49:43 (EDT)
Poster: Cindy <##> pfcg@cyberus.ca To: Scott Subject: Re: Surgeons, etc.<##>Re: Surgeons, etc. Message: Scott, I am in Ottawa, Canada, and dont know if your sister would like to speak with me by telephone, but I would be happy to do so. As a 30 year old female, I may be someone she can relate to. Check out my earlier posts in here to find out more about my situation. Let me know if she or you would like to call! :) Return to Index
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Date: Wed, May 13, 1998 at 17:46:31 (EDT)
Poster: Cindy <##> pfcg@cyberus.ca To: Marilyn Subject: Re: Re: Back home, Recovering!! <##>Re: Back home, Recovering!! Message: Thanks for the note, Marilyn..:) You are right, I gotta get on that CPM more often. Is there any alternative to you having the total knee replacement? Return to Index
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Date: Wed, May 13, 1998 at 10:27:23 (EDT)
Poster: Scott <##> sokol@helix.mgh.harvard.edu To: Everyone Subject: Surgeons, etc. Message: Hi everyone. First of all, I want to sincerely thank the creator of this web-site. It has proven invaluable to me and I've only been on it for the last couple of days. I also want to thank those of you who have answered my personal questions. In brief, my sister who is an active 36 year old was recently diagnosed with PVNS of the knee. Her orthopedic surgeon attemped an arthroscopic surgery but was apparently unable to get to the tumor, although he saw it clearly enough initially. Susan (my sister) lives in New York, but has no internet access. I agreed to help her compile information, also because I work in the health professions (I am a staff neuropsychologist at Mass. General in Boston and on the Neurology faculty of Harvard Medical School). I knew nothing of this disease until recently and neither did any of my close physician colleagues and friends. Susan appears not to have the diffuse sub-type, though I read that this may develop if not treated soon enough. I admit to being very depressed by your accounts (though of course heartened to learn of other sufferers who are dealing with the disease). At this point, my primary question relates to treatment. First, do any of you know of specialists in the New York area. I was made aware of Dr. Brick and have been in e-mail contact with him. The Brigham is part of the same health care system as Mass. General, but for my sister it probably will be costly as well as logistically difficult for her to come up here. If there are no other similar experts there, though, I will tell her to try to see him. Also, do any of you without diffuse damage have experience with arthroscopic versus other surgical options (i.e., is it the case that recurrence is almost sure even for someone without diffuse subtype with arthroscopic surgery). How involved is the recuperation depending on the type of surgery? Also, since my sister does not have e-mail, are there any of you who would be willing to talk with her by phone? Thanks much in advance, Scott Sokol Return to Index
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Date: Wed, May 13, 1998 at 00:24:24 (EDT)
Poster: Diane <##> DBKeys@aol.com To: Nadia Subject: Re: Re: Need Opinions <##>Re: Need Opinions Message: Hi, I recently got in touch with Dr. Brick for the first time and e-mailed him a long list of questions. He was quite quick to reply (next day) and also quite helpful. Unfortunately, in regards to my question about natural remedies, special diets, vitamins or activities that might slow the disease, he knew of none. Also, I was recently told (by a fellow sufferer) that increased estrogen levels during pregnancy can affect pvns (make it grow very fast). I am on the pill and am wondering if that can have the same effect. That's something Dr. Brick did not address in his response so I will have to ask my own doctor at some point. You might ask too, if your daughter takes the pill. Other than that, I have been curious about that new vitamin complex for women, to increase circulation and combat swelling in the legs. Since most of the damage pvns does is related to the swelling, I wonder if that supplement could help? The only natural remedy I have ever heard is sort of a Middle-Eastern old wives tale. They say that people with persistent knee problems should not eat eggs. Who knows if there's any truth to it?! Hi Nadia, Thanks for responding to my e-mail. I am glad you got a hold of Dr. Brick.. Someone told me he was unresponsive. Of course, conventional medical doctors know little or nothing of natural cures. They do not study this in school. Get the book "Encyclopedia of Natural Medicine" by Michael Murphy, ND and Joseph Pizzorno, ND. It will explain why today's doctors have gotten away from natural medicine. I believe many diseases can be at least slowed or improved through natural means, including proper diet and exercise. It stands to reason that if PVNS is akin to cancer, or at least is being treating with radioactivity, that yes, possibly estrogen aggravates the condition. Estrogen is found to cause other health problems, so why not PVNS. The natural remedy to alleviate vein swelling for varicose veins is horse chestnut extract. Venastat is the latest compound to come out on the market, however, there are other horse chestnut compounds that are cheaper and just as good. Get the "Encyclopedia" for more details on natural cures. If you decide it is all hogwash, the book will make a great door stop. lol It is said that arthritic people shouldn't eat foods from the nightshade family: potatoes, tomatoes, green and red pepper and eggplant (tobacco, too, but no one should smoke, snuff or chew anyway!!) Pregnancy, in itself, can cause varicose veins, excess fluids in the legs, excess weight, all which aggravate leg conditions, not too mention the hormonal problems. Colleen will be seeing her orthopedic doctor early this summer for an evaluation and we will go from there. If she has to see Dr. Brick, we are fortunate that three of her aunts live only 15 mile north of Boston. Hopefully, if we decide to go that route, he will take her as a patient. I hope she doesn't need to see him, though, you know what I mean! Best wishes to you. Diane Return to Index
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Date: Wed, May 13, 1998 at 00:05:56 (EDT)
Poster: Diane <##> DBKeys@aol.com To: Rosemary Subject: Re: Re: Need Opinions<##>Re: Need Opinions Message: Diane, As far as doctors go, I would suggest a teaching hospital. When I consulted a doctor about my knee for the first time, I was sent to an area teaching hospital to a Rhumatologist. She was very thorough, and quite willing to investigate. I did go back to the original orthodpedist for the surgery. I have not tried any natural remedies, but would if something showed even remote promise. I was very curious when I read your response to my posted message. I, too, am borderline hypothyroid, and have lower back problems (possible degenrative disc disease). I also have transient joint pain,although my primary care doc tells me the joint pain is part of the thyroid problem. Rosemary, Thanks for your suggestions. I do believe if we were to study the medical histories of PVNS sufferers, there would be common threads in all of them, such as hypothyroidism, for example. I am still pursuing naturopathic medical remedies for Colleen. Can't hurt. But she will see her doctor this summer for further evaluation. Once we get the results of the evaluation, then we will make some decisions. Best wishes. Diane Return to Index
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Date: Tues, May 12, 1998 at 10:43:55 (EDT)
Poster: Marilyn <##> BigBoyT1@aol.com To: Cindy Subject: Re: Back home, Recovering!! <##>Re: Back home, Recovering!! Message: Hi Cindy, Here's to wishing you a speedy recovery! Stick with that CPM machine as much as you can stand it...it really gives you back your ability to bend your leg...been there, done that. I'm currently weighing the pros and cons of a total knee replacement. After 5 surgeries and lots of tumors, my bones aren't very good anymore...however, I really hate to give them up! Return to Index
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Date: Sun, May 10, 1998 at 18:00:04 (EDT)
Poster: Cindy <##> pfcg@cyberus.ca To: Everyone Subject: Back home, Recovering!! Message: Had my 4th surgery on May 4th - involving an open synovectomy, removal of cysts and building up the holes in my cartilage with bone with my iliac crest. The surgeon says he couldnt get all the synoveum out, as it had spread to the back of my leg, and to remove it would be dangerous to the whole joing and arteries. The incision down the front of my leg is a good 10 inches, so I'm on the CPM machine to try and get the leg to bend soon!! As far as follow-up...will have to see..maybe radiation down the road, though the doctors think the knee is in bad enough shape that a total knee replacement is inevitable. So, that's my story..please send any responses, ask me any questions, I dont have much else to do besides type! :) CIN Return to Index
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Date: Sun, May 10, 1998 at 15:47:28 (EDT)
Poster: May Everaert <##> everaert@yucom.be To: John Smead Subject: Re: Could This Be The Cure? <##>Re: Could This Be The Cure? Message: I heard the news here in Belgium too. The names of the new drugs were: Endostatin and Angiostatin. Are we talking about the same new cure for cancer? I also hope it could be of help for us all. Does anybody know more details? Return to Index
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Date: Fri, May 08, 1998 at 00:42:45 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: John Smead Subject: Re: Could This Be The Cure? <##>Re: Could This Be The Cure? Message: I thought the same thing....dare we hope for good news??? I could sure use some good news. Return to Index
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Date: Fri, May 08, 1998 at 00:09:19 (EDT)
Poster: John Smead <##> sgenes@azstarnet.com To: MEGAN Subject: Re: POST SURGERY PROBLEM <##>Re: POST SURGERY PROBLEM Message: I hope that I can lend some encouragement. I went through three separate surgeries in September, November and January. In September they did the front of my leg from mid thigh to mid calf, November, rear of leg mid calf to mid thigh, January the outside of the leg from just above the knee to mid calf. This last surgery resulted in cutting a muscle and fear from the doctors of drop foot. The shin pain was nearly unbearable, but my doctor insisted that I exercise by moving my foot up and down as best I could "thousands of times a day." I followed his advice and after a few weeks it started to get better. I still have plenty of problems with this leg, but thank God drop foot is not one of them. I hope this helps you. Return to Index
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Date: Thurs, May 07, 1998 at 23:53:33 (EDT)
Poster: John Smead <##> sgenes@azstarnet.com To: Everyone Subject: Could This Be The Cure? Message: I am sure that many of you have listened with great anticipation this last week as the news broke concerning a possible new cure for cancer. The way the cure was described made me wonder, could this also be a cure for PVNS? Return to Index
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Date: Wed, May 06, 1998 at 20:46:00 (EDT)
Poster: Nadia <##> To: Diane Subject: Re: Re: Okay here goes... <##>Re: Okay here goes... Message: Hi, I answered you other message before I saw that you had answered my previous one, so I just thought I'd thank you. Also, you asked if I had any other related problems. I don't (as far as I know). I do have creaking in my right knee, but the doctors aren't worried about it. I am curious to know what YOUR treatment for Colleen has been, since her progression sounds slower than most cases I've heard of. It seems to me that maybe you're doing something right in that department... -Nadia Return to Index
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Date: Wed, May 06, 1998 at 20:37:09 (EDT)
Poster: Nadia <##> earhart2@yahoo.com To: Diane Subject: Re: Need Opinions <##>Re: Need Opinions Message: Hi, I recently got in touch with Dr. Brick for the first time and e-mailed him a long list of questions. He was quite quick to reply (next day) and also quite helpful. Unfortunately, in regards to my question about natural remedies, special diets, vitamins or activities that might slow the disease, he knew of none. Also, I was recently told (by a fellow sufferer) that increased estrogen levels during pregnancy can affect pvns (make it grow very fast). I am on the pill and am wondering if that can have the same effect. That's something Dr. Brick did not address in his response so I will have to ask my own doctor at some point. You might ask too, if your daughter takes the pill. Other than that, I have been curious about that new vitamin complex for women, to increase circulation and combat swelling in the legs. Since most of the damage pvns does is related to the swelling, I wonder if that supplement could help? The only natural remedy I have ever heard is sort of a Middle-Eastern old wives tale. They say that people with persistent knee problems should not eat eggs. Who knows if there's any truth to it?! Let us know if you find anything out - Nadia Return to Index
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Date: Wed, May 06, 1998 at 20:36:43 (EDT)
Poster: Nadia <##> earhart2@yahoo.com To: Diane Subject: Re: Need Opinions <##>Re: Need Opinions Message: Hi, I recently got in touch with Dr. Brick for the first time and e-mailed him a long list of questions. He was quite quick to reply (next day) and also quite helpful. Unfortunately, in regards to my question about natural remedies, special diets, vitamins or activities that might slow the disease, he knew of none. Also, I was recently told (by a fellow sufferer) that increased estrogen levels during pregnancy can affect pvns (make it grow very fast). I am on the pill and am wondering if that can have the same effect. That's something Dr. Brick did not address in his response so I will have to ask my own doctor at some point. You might ask too, if your daughter takes the pill. Other than that, I have been curious about that new vitamin complex for women, to increase circulation and combat swelling in the legs. Since most of the damage pvns does is related to the swelling, I wonder if that supplement could help? The only natural remedy I have ever heard is sort of a Middle-Eastern old wives tale. They say that people with persistent knee problems should not eat eggs. Who knows if there's any truth to it?! Return to Index
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Date: Wed, May 06, 1998 at 14:44:57 (EDT)
Poster: Rosemary <##> Rosemarmax@aol.com To: Diane Subject: Re: Need Opinions<##>Re: Need Opinions Message: Diane, As far as doctors go, I would suggest a teaching hospital. When I consulted a doctor about my knee for the first time, I was sent to an area teaching hospital to a Rhumatologist. She was very thorough, and quite willing to investigate. I did go back to the original orthodpedist for the surgery. I have not tried any natural remedies, but would if something showed even remote promise. I was very curious when I read your response to my posted message. I, too, am borderline hypothyroid, and have lower back problems (possible degenrative disc disease). I also have transient joint pain,although my primary care doc tells me the joint pain is part of the thyroid problem. Return to Index
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Date: Tues, May 05, 1998 at 16:10:26 (EDT)
Poster: Diane <##> DBKeys@aol.com To: Everyone Subject: Need Opinions Message: I am writing on behalf of my daughter, Colleen, who is 25 and has suffered from PVNS in her knee since the age of 13. We opted not to have the surgery at the advice of the surgeon. Now, 12 years later Colleen suffers from pain in her shoulders, transient joint pain (pain in other joints, from time to time) and a very bad lower back problem. In other words, her joints and skeletal structure are really messed up. She has avoided the doctors but now we feel it is time to go back, but question is, to who? It seems from what I have read that most doctors are really clueless about this disease. The most promising thing I read was about Dr. Brick at Brigham and Womens Hospital in Boston. He seems to have had results in "curing" one individual for 6 years now. Curing is in quotes, because from what I have read the disease also reoccurs. I have some questions of all of you out there in Internet land. 1. Do any of you also have other diseases that you feel might be related to the PVNS? 2. Have any of you had any success in treating the problem through natural medicines and diet? 3. If you haven't tried natural remedies and diet, have any of you considered it? I am becoming decreasingly disillusioned with conventional medical "cures" especially since both of my parents are literally killing themselves with the drugs they have had to take for various ailments over the years. You know the old cliche that "the cure is worse than the disease." It is often true. Please let me know you opinions on alternative remedies. My daughter and I, like all of you, are at a loss as to where to turn next for help. Good luck to all of you ! I hope you find relief from this lousy disease. Diane Return to Index
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Date: Tues, May 05, 1998 at 15:46:37 (EDT)
Poster: Diane <##> DBKeys@aol.com To: Rosemary Subject: Re: related disorders <##>Re: related disorders Message: Does anyone with PVNS also have thyroid disease? Are there any related disorders associated with PVNS? Hi Rosemary, I wrote to you under another of your headings, but then I noticed your questions about PVNS being linked to thyroid problems or other diseases. I believe that other diseases may be linked to PVNS. My daughter, who is a PVNS suffererer has psoriasis and is borderline hypothyroidism. She does not have thyroid disease, however. Diane Return to Index
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Date: Tues, May 05, 1998 at 15:41:49 (EDT)
Poster: Diane <##> DBKeys@aol.com To: rosemary Subject: Re: reoccurence <##>Re: reoccurence Message: I have had 2 surgeries on R knee for PVNS. My last was 1991. I'm wondering how long others have gone without a reoccurence. Just when I start to think PVNS is gone, my knee starts to hurt, reminding me that at any time............ Hi Rosemary, Check for my mail to Nadia and Pam for more information. Also, I believe that PVNS continues to reoccur. I don't believe the doctors really know enough about the disease to make it go away. If it does go away, the person is pretty lucky. I hate to be negative about it, but that has been my experience from what I have read through research. That's why I believe in at least trying some natural remedies. Good luck! Diane Return to Index
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Date: Tues, May 05, 1998 at 15:37:58 (EDT)
Poster: Diane <##> DBKeys@aol.com To: Pam Subject: Re: Other Elbows? <##>Re: Other Elbows? Message: After reading numerous letters, I noticed mostly knee joints were affected. I had a fracture in my right arm near my elbow last year and have complications from it ever since. The third ortho finally said he thought I had synovitis. Unfortunately I did no research since he seemed rather blaise about the whole thing. He said surgery would take care of it and that it only reoccurred in only 10%. My surgery was 10 weeks ago and I had therapy for 3 weeks. The pain increased and I was scheduled for a 2 month check-up. His comment was that it was still inflamed and he thought he could feel the synovitis coming back. On top of that I had tendonitis tennis elbow and I don't even play tennis! I teach first grade and I am righthanded. Anyone with suggestions or with an elbow problem? Hi Pam, Sorry about your problem. I am writing on behalf of my 25 yr old daughter, Colleen, who is also a teacher (special ed in high school). She has had PVNS since the age of 13 in her knee. She has never had surgery to remove the synovial tissue. Her surgeons (she's had two) said that it may be more damaging to remove it. Now she suffers from joint pain all over especially in her shoulders. I suspect that it may be linked to PVNS. Colleen also is a psoriasis sufferer and I believe it may all be linked. Psoriasis can lead to psoriatic arthritis. I am trying to get Colleen to go back to her doctor for a checkup for her shoulders and knee. I am skeptical about both surgery and radiation, though, but I just want to hear what the doc's conclusion is. Colleen is in constant dull pain. What I am now doing is treating her condition through natural medicine. I really believe in it, especially since the alternative is taking NSAID's like ibuprofen which will eventually kill her liver function. My mother suffers from drug-induced chronic hepatitis and that's not a pretty picture. I am treating her psoriasis and treating the PVNS as if it were osteoarthritis (which is the common form of arthritis). If you are interested in natural cures get the "Encyclopedia of Natural Medicine" by Michael Murray, ND and Joseph Pizzorno, ND. I found it at Barnes & Noble book store. Keep in touch. Let us know how you are doing. Good luck Diane Return to Index
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Date: Tues, May 05, 1998 at 15:37:54 (EDT)
Poster: Diane <##> DBKeys@aol.com To: Pam Subject: Re: Other Elbows? <##>Re: Other Elbows? Message: After reading numerous letters, I noticed mostly knee joints were affected. I had a fracture in my right arm near my elbow last year and have complications from it ever since. The third ortho finally said he thought I had synovitis. Unfortunately I did no research since he seemed rather blaise about the whole thing. He said surgery would take care of it and that it only reoccurred in only 10%. My surgery was 10 weeks ago and I had therapy for 3 weeks. The pain increased and I was scheduled for a 2 month check-up. His comment was that it was still inflamed and he thought he could feel the synovitis coming back. On top of that I had tendonitis tennis elbow and I don't even play tennis! I teach first grade and I am righthanded. Anyone with suggestions or with an elbow problem? Hi Pam, Sorry about your problem. I am writing on behalf of my 25 yr old daughter, Colleen, who is also a teacher (special ed in high school). She has had PVNS since the age of 13 in her knee. She has never had surgery to remove the synovial tissue. Her surgeons (she's had two) said that it may be more damaging to remove it. Now she suffers from joint pain all over especially in her shoulders. I suspect that it may be linked to PVNS. Colleen also is a psoriasis sufferer and I believe it may all be linked. Psoriasis can lead to psoriatic arthritis. I am trying to get Colleen to go back to her doctor for a checkup for her shoulders and knee. I am skeptical about both surgery and radiation, though, but I just want to hear what the doc's conclusion is. Colleen is in constant dull pain. What I am now doing is treating her condition through natural medicine. I really believe in it, especially since the alternative is taking NSAID's like ibuprofen which will eventually kill her liver function. My mother suffers from drug-induced chronic hepatitis and that's not a pretty picture. I am treating her psoriasis and treating the PVNS as if it were osteoarthritis (which is the common form of arthritis). If you are interested in natural cures get the "Encyclopedia of Natural Medicine" by Michael Murray, ND and Joseph Pizzorno, ND. I found it at Barnes & Noble book store. Keep in touch. Let us know how you are doing. Good luck Diane Return to Index
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Date: Tues, May 05, 1998 at 15:21:33 (EDT)
Poster: Diane <##> DBKeys@aol.com To: Nadia Subject: Re: Okay here goes... <##>Re: Okay here goes... Message: Hi again, So, I was going to introduce myself...I am 27, live in Seattle and have been dealing with pvns in my left knee for 4 years now. I had my third scope last week and am currently icing my knee and crossing my fingers. I changed doctors after the first two scopes (due to a change in medical insurance) and my new doc did the most complete synovectomy he could arthroscopically. He doesn't know a great deal about pvns, but seems very eager to learn, which is a trait I have found lacking in other orthos I've consulted. I asked him about radiation treatment and he was very skeptical due to what he sees as increased cancer risk and possible joint erosion. Reading Nancy's story, however, has reinforced my desire to learn more about it (long-tern effects and what the real chance of risk is, etc). While I was relieved to find this support/discussion group, I must admit to being very discouraged by your stories. I only wonder if you are, as a group, indicative of the 'norm' for pvns patients (if there is one) or if you have been united by the fact that you have rather severe cases? Some other questions I have: 1. How do you know if it exists beyond the joint (are there added symptoms or is that only something an MRI can catch)? 2. Does it always invade the bone and how do you know if that's the case? 3. Does your swelling go down between surgeries (mine hasn't)? I have read where some of you mention pain management, which isn't an issue for me. Is the pain related to advanced stages of the disease? I have the aching and discomfort one could expect from having a knee the size of a grapefruit, but 400 mg of ibuprofen takes care of that (and I only take that occasionally, as liver failure is not something I want to deal with). I am going back for my post-op visit on Tuesday and will discuss some of what I have learned from you with my doctor (including article 8). I also want to get in touch with Dr. Brick in Boston so if anyone has contact info for him, please pass it along. Well, thanks for the info and support and I look forward to your replies. Chins up! - Nadia Hi Nadia, I am writing on behalf of my daughter, Colleen, who is 25, and an Exceptional Student Ed high school teacher. She is so busy she rarely has time to search the internet, so I do it for her. Since the age of 13 she has suffered from PVNS. She complained about knee pain for a couple of months after she had played a game of tennis. We thought nothing of it because the pain was more of an ache and we all figured it would go away. Then one day her knee began to swell out of the clear blue and it was time to consult an orthopedic surgeon. After performing arthroscopic surgery the doctor at first thought she had rheumotoid arthritis. We were devastated. However, when the synovial tissue was examined, it was found that she had this rare disease PVNS. Now, 12 years later, Colleen's knee still swells. While still in high school she became an "ibuprofen junky." I was very concerned and since then she has laid off the ibuprofen unless the pain gets really bad, which it rarely does. We didn't know then that ibuprofen can be liver damaging. Now Colleen's shoulders hurt as well as other joints from time to time and she has a very bad lower back. She can barely lift anything heavy. She spent her spring break with back pain from lifting. Now that I am back home for good (her dad and I were away for 3 years) I am beginning to do research in order to help her myself. The doctors don't really know what to do. All they know is surgery and radiation, both of which are not where we want to go with this right now. Also, Colleen suffers from psoriasis and we think there may be a connection between the two diseases. I am beginning to wonder how many PVNS sufferers also have psoriasis or other health problems that may be linked to this disease. I am searching for herbal and alternative cures to her problem. I am now treating her with natural methods and diet similar to how one treats osteoarthritis. I am also treating her psoriasis in the same fashion. I have noticed that the treatments are similar for both diseases and feel that her system may be lacking something she needs to fight both of these problems. My mother was just diagnosed with severe chronic hepatitis that was drug-induced because she had to take a drug for years that is ruining her liver. I don't want Colleen to take that same road, if we can help it. Do you have other health problems that you feel may be linked to the PVNS? It would be interesting to know. Keep in touch and let Colleen and I know how you are doing. Diane Return to Index
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Date: Mon, May 04, 1998 at 11:38:41 (EDT)
Poster: megan <##> To: Jim Morrison Subject: Re: Re: POST SURGERY PROBLEM <##>Re: POST SURGERY PROBLEM Message: hi jim my operation was on the front and back of my knee, it has left me with numbness down the out side of my leg from the knee to my ankle and i have no feeling whatsoever from my ankle to my toes, although i do have feeling on the sole of my foot, i have been given the most horrible splint imaginable to keep my foot in the correct position and it is so big and clumpy i cannot wear a shoe on that foot. i have seen my surgeon and he says that he is confident the feeling will come back, but i'm not so sure. i have been told that i will probably need another op in about 2 years time for the pvns as it is sure to reoccur. thanks for taking time out to reply to my initial message Return to Index
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Date: Fri, May 01, 1998 at 15:41:54 (EDT)
Poster: Rosemary <##> rosemarmax@aol.com To: Everyone Subject: related disorders Message: Does anyone with PVNS also have thyroid disease? Are there any related disorders associated with PVNS? Return to Index
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Date: Tues, Apr 28, 1998 at 17:56:47 (EDT)
Poster: Lorri Trosper <##> Lorrigrl@aol.com To: rosemary Subject: Re: reoccurence<##>Re: reoccurence Message: I had surgery in December of 1988, and went until December of 1996 before I had surgery again. I have also had surgery twice in one year. It all depends on the circumstances, and the trauma associated with that part of the body. Hope all is well, and good luck with this horrid disease. Lorri Trosper Return to Index
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Date: Sat, Apr 25, 1998 at 23:46:27 (EDT)
Poster: Cindy <##> pfcg@cyberus.ca To: Everyone Subject: Bone Grafting Message: I have had 3 scopes done to treat PVNS of my right knee, but now, due to bone loss in the knee, have to have an operation on May 4th involving bone grafting from my iliac crest to re-build the knee. Has ANYONE had bone grafting?? Hope to hear a reply soon, surger is a week away!!! Return to Index
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Date: Sat, Apr 25, 1998 at 23:43:00 (EDT)
Poster: Cindy <##> pfcg@cyberus.ca To: rosemary Subject: Re: reoccurence<##>Re: reoccurence Message: I have had 2 surgeries on R knee for PVNS. My last was 1991. I'm wondering how long others have gone without a reoccurence. Just when I start to think PVNS is gone, my knee starts to hurt, reminding me that at any time............ I have had 3 surgeries, 87, 89, 91, and had hoped the pvns would be gone from my right knee..but some still remained, it led to bone erosion. So, 4th surgery is scheduled for May 4th, involving bone grafting and open synovectomy. Return to Index
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Date: Wed, Apr 22, 1998 at 12:13:24 (EDT)
Poster: rosemary <##> Rosemarmax@aol.com To: Everyone Subject: reoccurence Message: I have had 2 surgeries on R knee for PVNS. My last was 1991. I'm wondering how long others have gone without a reoccurence. Just when I start to think PVNS is gone, my knee starts to hurt, reminding me that at any time............ Return to Index
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Date: Mon, Apr 20, 1998 at 17:28:56 (EDT)
Poster: Pam <##> pappleby@ed.scetv.org To: Everyone Subject: Other Elbows? Message: After reading numerous letters, I noticed mostly knee joints were affected. I had a fracture in my right arm near my elbow last year and have complications from it ever since. The third ortho finally said he thought I had synovitis. Unfortunately I did no research since he seemed rather blaise about the whole thing. He said surgery would take care of it and that it only reoccurred in only 10%. My surgery was 10 weeks ago and I had therapy for 3 weeks. The pain increased and I was scheduled for a 2 month check-up. His comment was that it was still inflamed and he thought he could feel the synovitis coming back. On top of that I had tendonitis tennis elbow and I don't even play tennis! I teach first grade and I am righthanded. Anyone with suggestions or with an elbow problem? Return to Index
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Date: Sat, Apr 18, 1998 at 20:09:01 (EDT)
Poster: Nadia <##> cborealis@aol.com To: Everyone Subject: Okay here goes... Message: Hi again, So, I was going to introduce myself...I am 27, live in Seattle and have been dealing with pvns in my left knee for 4 years now. I had my third scope last week and am currently icing my knee and crossing my fingers. I changed doctors after the first two scopes (due to a change in medical insurance) and my new doc did the most complete synovectomy he could arthroscopically. He doesn't know a great deal about pvns, but seems very eager to learn, which is a trait I have found lacking in other orthos I've consulted. I asked him about radiation treatment and he was very skeptical due to what he sees as increased cancer risk and possible joint erosion. Reading Nancy's story, however, has reinforced my desire to learn more about it (long-tern effects and what the real chance of risk is, etc). While I was relieved to find this support/discussion group, I must admit to being very discouraged by your stories. I only wonder if you are, as a group, indicative of the 'norm' for pvns patients (if there is one) or if you have been united by the fact that you have rather severe cases? Some other questions I have: 1. How do you know if it exists beyond the joint (are there added symptoms or is that only something an MRI can catch)? 2. Does it always invade the bone and how do you know if that's the case? 3. Does your swelling go down between surgeries (mine hasn't)? I have read where some of you mention pain management, which isn't an issue for me. Is the pain related to advanced stages of the disease? I have the aching and discomfort one could expect from having a knee the size of a grapefruit, but 400 mg of ibuprofen takes care of that (and I only take that occasionally, as liver failure is not something I want to deal with). I am going back for my post-op visit on Tuesday and will discuss some of what I have learned from you with my doctor (including article 8). I also want to get in touch with Dr. Brick in Boston so if anyone has contact info for him, please pass it along. Well, thanks for the info and support and I look forward to your replies. Chins up! - Nadia Return to Index
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Date: Sat, Apr 18, 1998 at 19:31:18 (EDT)
Poster: Nadia <##> cborealis@aol.com To: Everyone Subject: Hi there Message: Hi there, I wrote a lengthy introduction and was unable to post it, so this is a test message. If it goes through, I'll re-write my original message. Thanks for your patience. Return to Index
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Date: Fri, Apr 17, 1998 at 12:01:31 (EDT)
Poster: jane <##> jbradley@hpnc.com To: Lorri Subject: Re: back again <##>Re: back again Message: july 1997 I had front and back surgery by a ortho oncologist. So far no problems. This was my first surgery; was very involved, very large. Am to have MRI in June. Can walk and be on my leg virtually painfree. No recurrent swelling. My doctor had only seen two cases of pvns, but believed she got it all. However, I cannot freely bend my knee and sometimes it is wobbly. I have had no other surgeries, but this seems to be how THE BIG BOYS DO IT up around Boston! Return to Index
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Date: Sat, Apr 11, 1998 at 22:24:00 (EDT)
Poster: Marilyn <##> BigBoyT1@aol.com To: Everyone Subject: SSI Message: After all these months, I finally got a letter today from Social Security stating that I was turned down for benefits. I had heard that you could expect to be turned down the first try, but it was still disappointing when I opened the envelope. I'm open for suggestions from anyone else who either has been approved or turned down by Soc. Sec. I'm wondering if I need to get an attorney at this point or just file more papers myself? Any suggestions???? HELP! Return to Index
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Date: Sat, Apr 11, 1998 at 21:06:06 (EDT)
Poster: Jim Morrison <##> morrisja@jnlk.com To: MEGAN Subject: Re: POST SURGERY PROBLEM <##>Re: POST SURGERY PROBLEM Message: Hi Megan, Sorry to hear the bad news. I was wondering where your doctor operated on your knee at? Was the footdrop caused by the disease or where your doctor performed the surgery? I still have the disease in the back of my knee and I experience a numb feeling in my shin and accross the top of my toes. It's not there all the time, but it drives me nuts when it is present. I hope everything turns out for the best for you. Take Care, Jim Morrison Return to Index
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Date: Sat, Apr 11, 1998 at 11:55:32 (EDT)
Poster: MEGAN <##> MRatcl1484@aol.com To: Everyone Subject: POST SURGERY PROBLEM Message: I HAVE JUST UNDERGONE MY 4TH SURGERY FOR PVNS, IT HAS NOT BEEN VERY SUCCESSFUL, I HAVE STILL GOT TERRIBLE PAIN IN MY SHIN, AND DUE TO THE OPERATION I NOW HAVE ALSO GOT A CONDITION CALLED FOOTDROP, AND I HAVE TO WEAR A SPLINT TO KEEP MY FOOT IN THE CORRECT POSITION. I HAVE BEEN TOLD THAT IF I HAVE NOT GOT THE USE OF MY FOOT WITHIN 6 MONTHS THEN I WILL NOT GET ANY USE AT ALL. HAS ANYONE ELSE SUFFERRED THIS PROBLEM AFTER SURGERY. I AM TOTALLY GUTTED. Return to Index
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Date: Tues, Apr 07, 1998 at 16:59:27 (EDT)
Poster: Josh <##> To: Peggy Subject: Re: opinions<##>Re: opinions Message: I have had PVNS for about 10 diagnosed years, and was having symptoms for 5 or 6 years before that and did not have my first tumor unitl 5 years ago, so yes, you can have it with no tumors, although they could show up later. I hope you get an answer and that its NOT PVNS. Return to Index
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Date: Mon, Apr 06, 1998 at 17:04:50 (EDT)
Poster: Pauletta Nixon <##> JRPN@juno.com To: Peggy Subject: Re: opinions <##>Re: opinions Message: My experience with PVNS began very much like yours. I fell and tore the menicus and after 2 surgeries the patholigist report came back with the diagnosis of PVNS. I have had 3 surgeries so far. There has not been any tumors so far. My doctor says that there are different types of PVNS and each case should be treated accordingly. If you have any more specific questions, please email me at JRPN@juno.com Return to Index
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Date: Sun, Apr 05, 1998 at 15:02:09 (EDT)
Poster: Lorri Trosper <##> Lorrigrl@aol.com To: Peggy Subject: Re: opinions<##>Re: opinions Message: Peggy, I am so sorry to hear of your problem. I would definately have your doctor have the pathologist test it for pvns. It is always best to have a accurate diagnoses, so that they can treat as best as possible. Hope that everything turns out ok, feel free to e-mail me if you have any questions. Return to Index
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Date: Sun, Apr 05, 1998 at 14:51:18 (EDT)
Poster: Lorri Trosper <##> Lorrigrl@aol.com To: May Everaert Subject: Re: Re: Are You Considering Radiation? <##>Re: Are You Considering Radiation? Message: John, Thanks for the advice. I had radiation in January of 1997. Since the radiation, I have had a lot of problems with my knee. The radiation has made the arthritis worse, now the disease is back, and I am frustrated. I feel like the radiation was a waste of time and money. Good luck with your leg, and I haope that they do not have to amputate. Return to Index
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Date: Thurs, Apr 02, 1998 at 16:35:55 (EST)
Poster: May Everaert <##> everaert@yucom.be To: John Smead Subject: Re: Are You Considering Radiation? <##>Re: Are You Considering Radiation? Message: Dear John, I find it most regrettable to hear this news from you. You have been putting in a great effort towards a possible relief of your problems with PVNS. I hope there is a way for you to prevent amputation. Five years ago I faced amputation too. Today the PVNS grows much slower, thanks to the Yttrium. But I am aware that what happens to you today might happen to me someday. I hope you will make the right decision, amputation is a decision that is very hard to make, I think impossible to ever decide ... I really hope you will find another solution ! Good luck to you, whatever happens, keep us informed. May Return to Index
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Date: Thurs, Apr 02, 1998 at 16:31:53 (EST)
Poster: May Everaert <##> everaert@yucom.be To: Peggy Subject: Re: opinions <##>Re: opinions Message: Hi Peggy, I think an MRI scan would be one of the best and less painfull ways to discover whether you have PVNS or not. If you have a scope synovectomy, a pathological examination will give you the final answer. Good luck to you, May Return to Index
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Date: Thurs, Apr 02, 1998 at 12:29:08 (EST)
Poster: Nancy <##> BADNE@aol.com To: Lorri Subject: Re: back again<##>Re: back again Message: I'm sorry to hear yours has grown back again. I had on open front and back about 6 years ago and a radiation injection 9 weeks after scurgery and I'm still clean. My recooperation time was a week in the hospital, 6 weeks out of work and about 4-5 months of physical therapy. Before that time I had 4 orthroscopic surgeries. I think it is very important to get all of the growth out before any kind of radiation. Is the same doctor doing all these surgeries. Have you thought of checking out someone else? Let me know if I can help you out. Return to Index
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Date: Thurs, Apr 02, 1998 at 12:22:59 (EST)
Poster: Nancy <##> Badne@aol.com To: Kathy Subject: Re: New diagnosis<##>Re: New diagnosis Message: I just read your posting about your sister. I would DEFININTELY go to someone who has seen PVNS before. I am from Chicago and after 4 surgeries I went out to see Dr. Brick in Boston and Brigham and Women's Hospital. I understand one of his associates is in Rockford so that might be something to check out. I've been clean for 6 years. Go anywhere you can to get an expert in this field or you will have additional problems after the surgery. If you need to contact me by e-mail I'm at BADNE@aol.com Return to Index
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Date: Wed, Apr 01, 1998 at 16:33:31 (EST)
Poster: dilullob@execulink.com <##> To: Peggy Subject: Re: opinions <##>Re: opinions Message: I certainly would be getting a second or third opinion. It sounds like pvns to me. Return to Index
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Date: Sun, Mar 29, 1998 at 10:47:32 (EST)
Poster: Peggy <##> catboat@cco.net To: Everyone Subject: opinions Message: Hello everyone- I just discovered this site. I know you can't "diagnose" me, but I have some questions. I did a search for synovitis, because that is what my MD says I have. He has never called it PVNS, nor to my knowledge do I have tumors. What I have seems much milder than what most of you are describing. My heart goes out to you all and what you're dealing with. My Dr seems at a loss as to what is going on with me. I went to him 5 yrs ago with a swollen painful knee. He did a scope and found a torn meniscus and lots of inflamed tissue. Repaired the meniscus and thought swelling would go away. It only got worse. Repeated testing for rheumatoid arthritis all neg. He says thats the only thing he can think it might be. Tests negative, and only occurring in one knee. He did an open synovectemy, and the swelling was better for a few years, until lately. So I'm not sure I have PVNS. But I would like to know what's up with my knee. As I said, there are no tumors, just a puffy knee. The pain ranges from none to aching to shar p pain and some limited flexibility, probably because it's swollen. Last X-Ray showed that the "cushioning" in my knee is going away. I go in Wed. for another synovectemy, this one a scope. Any suggestions on what I should ask my Dr. Does this sound like PVNS? Are there wide degrees of severity? Any replies would be appreciated. Best wishes to all of you. Return to Index
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Date: Thurs, Mar 26, 1998 at 11:49:58 (EST)
Poster: Marilyn <##> To: John Smead Subject: Re: Are You Considering Radiation? <##>Re: Are You Considering Radiation? Message: What you just said sound really scary to me...because I am right now just waiting. I know the tumors are there, but I can't stand surgery again. I've already had all the radiation they will give me. I've never considered the amputation angle...and I hope I never have to! Good luck to you. Return to Index
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Date: Wed, Mar 25, 1998 at 22:09:48 (EST)
Poster: John Smead <##> sgenes@azstarnet.com To: Everyone Subject: Are You Considering Radiation? Message: If you are considering radiation, there are some things you need to know. In preparation for conventional radiation therapy, I had three surgeries to remove the larger portions of my PVNS. After the third surgery I was sent for a folow-up MRI so that my therapy could be planned. After seven visits to the oncologist it was determined that I was not eligible for radiation because my leg was too involved with PVNS. As it turns out, only two-thirds of your leg can ever receive radiation and my leg is four-fifths involved with PVNS. In other words, they would have to kill my leg to save it. So now, after seven surgeries they are back to talking about amputation. The moral of this story is, don't delay getting the necessay treatment for your PVNS. It is always growing and destroying regardless of what you may hope or think. God Bless you all. Return to Index
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Date: Sun, Mar 22, 1998 at 18:30:36 (EST)
Poster: dilullob@execulink.com <##> To: Lorri Subject: Re: back again <##>Re: back again Message: I had 3 scopes done before having the open front and back synovecvtomy. I had good success with this approach. I will tell you though , that recuperation time is about 2 months. Also , if you get this type of surgery done I highly recommend getiing that passive motion machine on your knee as soon as you can after surgery. I had my knee with only 30 degree bend , 3 weeks after surgery and I had to be put under general anesetic to break the scar tissue. This procedure is called MUA. Manupulation under anestetic. It has been 2 years since that operation and still relativally pain free. I did not have follow up radiation but I beleive that was a mistake. I have heard some good success stories with an oncoligist following this type of surgery with many radiation treatments. Return to Index
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Date: Sun, Mar 22, 1998 at 15:01:49 (EST)
Poster: May Everaert <##> everaert@yucom.be To: Marilyn Smith Subject: Re: again & again & again! <##>Re: again & again & again! Message: I wish we could go to the doctor tomorrow to get a prescription for the "Golden Syrup" that would make the PVNS melt away like butter in the sun. But we live on earth, and magicians don't exist (as far as I know!). Seriously now: I also try to wait as long as possible for surgery, because every time I have to go to hospital I am getting more depressed. But we have to stay awake and we may not let things take its course. The only hope we have is finding each other here, share our problems and hope someday the bottle of "Golden Syrup" is found somewere. We're lucky to have support in Cyberspace. I hope you make the right decision Marilyn, keep your spirits up! Return to Index
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Date: Sun, Mar 22, 1998 at 15:00:40 (EST)
Poster: May Everaert <##> balliauw@villa To: megan ratcliffe - uk Subject: Re: surgery <##>Re: surgery Message: I hope the operation was successfull and that you had all the support you needed ! I wish you a speedy recovery and I hope you are able to stay out of hospital for a long time ! May Return to Index
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Date: Sun, Mar 22, 1998 at 14:59:26 (EST)
Poster: May Everaert <##> everaert@yucom.be To: Feroz Jafferji Subject: Re: Right hip replacement <##>Re: Right hip replacement Message: I am sure you will find somebody with the same problem in the "Links to other patients" part of the webpage. Maybe you could try to contact him/her. Return to Index
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Date: Sun, Mar 22, 1998 at 12:29:35 (EST)
Poster: Marilyn <##> BigBoyT1@aol.com To: Kathy Subject: Re: New diagnosis <##>Re: New diagnosis Message: I'm really sorry to hear that your sister has joined our ranks. As you can tell from reading all the other messages here, there really isn't a cure for this. Surgery becomes an all too frequent routine. If I were your sister, I would proceed as quickly as possible to an orthopaedic oncologist at a University-type teaching hospital. Don't mess around with a "well-intending" but clueless Doctor. My first 3 surgeries were done by a nice local doc, but the results were disappointing. My most recent 2 surgeries were done at USC and my doc is the director of orthopaedic oncology. I still have a mess in my leg, but I feel like I am getting the best care possible and that my doc has access to the most recent technology available. Good luck! Return to Index
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Date: Sun, Mar 22, 1998 at 05:05:26 (EST)
Poster: Feroz Jafferji <##> feroz.jafferji@which.net To: Everyone Subject: Right hip replacement Message: I am writing on behalf of a friend who has been provisionally diagnosed as a sufferer of pvns. He or his specialist didnot know much about this condition, so I have been researching it on the net. Thank god for geocities homepage. Could anyone who has gone through the hip replacement for pvns please contact me about their experiences to give some hope to my 34 year old friend? . His wife and family are obviously distressed and I will pass on anything that anyone writes to me about. As they say a problem shared is a problem halved. My friend's surgery is scheduled for 28th April98. Thank you all . Feroz Jafferji Hove UK Return to Index
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Date: Sat, Mar 21, 1998 at 16:35:34 (EST)
Poster: Lorri <##> To: Kathy Subject: Re: New diagnosis<##>Re: New diagnosis Message: I live in Rockford, Il. and my doctor interned with Dr. Brick from Boston, who specializes in PVNS. My doctors name is Dr. Chmell. He has a very good knowledge of the disease, and a nice bedside manner(wich is important to me). I dont know if this helps you, but if you dont mind and extra hour from Chicago go see him. Also that type of surgery is typical to the disease. If you need to e-mail with any questions, my address is Lorrigrl@aol.com. Return to Index
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Date: Fri, Mar 20, 1998 at 22:11:31 (EST)
Poster: Kathy <##> MKSTEINHARDT@prodigy.net To: Everyone Subject: New diagnosis Message: My 19 yr old sister was just diagnosed today and my mom asked me to see what info is available. They found a tear in my sisters lateral meniusis (sp) and wehen they went in orthoscpically they foud other thinds like red-brown fluid and nodulars. The Dr siad theat he is schduling surgery for her again in a couple of weeks to go in and scrape her knee completely. Is this a normal treatment for this? Also, we live in Indiana about an hour from Chicago. Do you think it would be better to see a Dr in one of the big hospitals in Chicago. The Dr here admitted he has never seen a case of PVS before. I'd appreciate any comments. Thanks. Return to Index
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Date: Wed, Mar 18, 1998 at 22:50:00 (EST)
Poster: Marilyn <##> BigBoyT1@aol.com To: Lorri Subject: Re: back again <##>Re: back again Message: I had surgery done in 1993 that included opening up the back of my leg as well as the front. On the back side, the incision starts on the lateral side of my leg about 4 inches below my knee crease, crosses my leg at the crease, and goes on up the medial side about 6 inches. On the front side the incision is a straight cut about 12 inches long. Prior to that surgery I was having troubles with circulation if I sat for any length of time. After the surgery, that got better. That surgery was followed by a month of radiation, daily. I had complications with blood clots in my calf. It was hard to get strength built up again. However, after I got past the healing time, I actually had a couple of years in remission. I was able to put off surgery again until March 1997. That was a long time for me. Previously I had 3 surgeries just 6 months apart! I knew that I had tumors in the back of my leg before the first surgery, but the doc didn't want to operate there because it is a hard place to heal. So my firs t 3 surgeries were front side only. I think that was a mistake because I eventually had to get the tumors out of the back side, and by letting them grow for those extra years, they really got embedded into all the good stuff back there. Because of the radiation treatments, my surgery in 1997 couldn't be where the skin had been radiated, that skin won't heal properly, so that surgery was an incision up the medial side of my leg and from there my doc was able to work on both the front and back sides. I didn't have radiation after the 1997 surgery because I've already had the max I can without getting cancer. Now, just a year later, the back side of my leg is full of tumors again. I had an MRI scan done, and saw doc yesterday. I wish I had a magic cure to share with you....good luck! Return to Index
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Date: Wed, Mar 18, 1998 at 22:11:03 (EST)
Poster: Lorri <##> Lorrigrl@aol.com To: Everyone Subject: back again Message: Hello all, guess what? It is back yet again, and I am going to schedule surgery number 11. I am so sick of this disease, it just make me want to scream. I would like to hear from people who have had the bilateral surgery done(back and front). This is one of my options, and I am debating on weather to have it. I am thinking of waiting until april or may to have the surgery. Any input would be greatly appreciated. You can e-mail, all are welcome. Thanks for your support all, and have a nice day!! Return to Index
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Date: Tues, Mar 17, 1998 at 23:45:12 (EST)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: Everyone Subject: again & again & again! Message: I took my MRI scan to the doc today. He confirmed that I have another big mess of tumors in my knee..this time they seem to be mostly on the back side of the joint. I was given the choice of: a) total knee replacement, b) clean out the tumors, c) wait until it hurts worse. I chose "c". Wouldn't it be great if they could really cure this disease? I just keep waiting... Return to Index
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Date: Tues, Mar 17, 1998 at 09:53:51 (EST)
Poster: Marilyn Smith <##> bigboyt1@aol.com To: megan ratcliffe - uk Subject: Re: surgery <##>Re: surgery Message: Good Luck, Megan! Surgery is the pits and we have all been there. Hope you have a speedy recovery and that the doc gets all the bad stuff out! Our prayers are with you. Return to Index
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Date: Sun, Mar 15, 1998 at 18:11:53 (EST)
Poster: megan ratcliffe - uk <##> MRatcl1484@aol.com To: Everyone Subject: surgery Message: just to let everyone know igo into hospital tomorrow for my 4th surgery, wish me luck if i find out anything new about treatment i will let you all know. bye Return to Index
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Date: Wed, Feb 25, 1998 at 17:08:20 (EST)
Poster: Marian <##> m.hazenberg@worldonline.nl To: Everyone Subject: physiologist Message: My surgeon referred me to the physiologist as a preventive remedy. Does anybody have experience in a good treatment with a inflamed knee? Does a little bit of stream grow worse the inflammation? Next Tuesday I have my first appointment. Bye Return to Index
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Date: Tues, Feb 24, 1998 at 17:02:34 (EST)
Poster: Jim Morrison <##> morrisja@jnlk.com To: Marian Subject: Re: PVNS - my story <##>Re: PVNS - my story Message: Hi Marian, Welcome to the group. Sounds like a good idea to have your doctor look over the site. My first two operations were performed by two different doctors who did not know what I had. Return to Index
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Date: Tues, Feb 24, 1998 at 16:52:34 (EST)
Poster: Jim Morrison <##> morrisja@jnlk.com To: May's husband Subject: Re: May's surgery <##>Re: May's surgery Message: May I just hope you a fast recovery and wanted to mention that the Web Site is looking good! Thanks, Jim Morrison Return to Index
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Date: Tues, Feb 24, 1998 at 16:22:43 (EST)
Poster: Marian <##> m.hazenberg@worldonline.nl To: Everyone Subject: PVNS - my story Message: Hi all, I've tried to read the PVNS homepage as much as possible in 1.5 hours. After that I can conclude that I'm not the only one with this disease. My story is that I'm a 29 years old woman with PVNS on my left knee (how typically?). I've been operated for 4 times and my doctor suggested a fifth one, he also wants to postpone that and gave me some medicines, (Naprosyn 2x 500mg) but that doesn't help enough. I don't want a operation, because the last operation was 2.5 years ago. When I read your messages the average time is 2 years (the last operation was very complex, with 24 sutures (my knee looked like a collared beef). My knee is so very damaged that my surgery wants to replace my knee. That's why I'm desperately seeking on Internet to companion in distress on internet. I really thought that I'm the only one in the Netherlands and my doctor said there will be about 6 persons in the Netherlands with this disease, he only knows one patient in his practice, a man of about 32. (the average age is very young isn't it, I saw 14 and 16 years. You all are not very old I think? May I'm very suprised that you've made a homepage of this disease and I will wish you a lot of success with your recovery. I've some questions about this disease that my surgery cannot answer: - Is PVNS herediatery, because we want a baby but I'm in doubt. - What is your experience when PVNS returned? My experience is that a high temperature is good for a worsening of the complaints. - Is it a locally affection? I read some of you have two affected knees. - Do you have all started with a tumor? - Does anybody know the developing of this disease? The only thing I know is that I've been fallen on my left knee for three times about 13 years ago with skating on ice. The only thing I had on that moment was a effusion of blood, not a reason to go see the doctor. The years thereafter the only complaint I had was that my knee was tired after a long distance walk. But in 1989 I couldn't sit on my left knee, I couldn't bend the knee and it became swelling, about 5 cm more than the other. I went to the hospital and they took some pictures. There was a tumor in my bone with a diameter of about 3 cm. That was the beginning of 4 operations.Three in one year, and the following 2 years later. I will give my surgery this address, maybe he can read some suggestions of you. I've printed some of your messages to give it to him, maybe it can be helpful for him. I'm of good heart for a sollution for PVNS and don't lose courage!! Best regards, Marian Return to Index
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Date: Tues, Feb 24, 1998 at 16:08:32 (EST)
Poster: May's husband <##> everaert@yucom.be To: Everyone Subject: May's surgery Message: Patrick is writing this email : May had surgery last Thursday Feb 19 1998. Surgery began 09.30 hrs, ended 12.30 hrs. Doc removed a large piece of PVNS, he says as big as a melon. He also cleaned the PVNS from the bone, major artery, major nerve. May's leg looks rather good, still swollen, all the bumps are away now. Doc said the PVNS was pale of color, maybe a sign that it is less active at this time. The very best news is this: May had permission to leave the hospital today, she spent only 4 nights in hospital. She is now recovering at our home, she sends her greetings, and thanks for your prayers and concern. I will also add a copy of this email to the online message forum. I also updated the WebPages today, new is a mailing list ! Bye, Patrick Return to Index
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Date: Sun, Feb 22, 1998 at 18:41:27 (EST)
Poster: Gayle Crohan <##> sun.shine@nashville.com To: May Everaert Subject: Re: Surgery <##>Re: Surgery Message: May, just logged on to your site - that goodness your surgery should be all over by now. My thoughts and prayers are with you for a speedy recovery. I saw my daughter, Trish, through her surgery, and I know how uncomfortable it was for her. Take care. We'll all be thinking about you. Return to Index
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Date: Sun, Feb 22, 1998 at 04:42:15 (EST)
Poster: Siegfried Kroll <##> siegfried.kroll@t-online.de To: J Patt Subject: Re: Re: Operation with a laser <##>Re: Operation with a laser Message: Thank you very much for your information about surgery with a laser. It is very interesting to hear your positive result. I was not sure about this method because I have a diffuse PVNS in the right knee and the surgeon has to remove the whole synovium. Have you informations whether the Univ. of Michigan use the laser also for a surgery of diffuse PVNS. Return to Index
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Date: Fri, Feb 20, 1998 at 15:15:59 (EST)
Poster: J Patt <##> jpatt@engin.umich.edu To: Siegfried Kroll Subject: Re: Operation with a laser <##>Re: Operation with a laser Message: I had a localized PVNS lump removed from my left knee by arthroscipic laser synovectomy at the Univ. of Michigan. (my 1st and only surgery). The laser provides greater precision than traditional methods. There is less chance of recurrence since the surgeon has better control of what is removed. Also the recovery time is shorter since there is far less trauma to the synovium. My result is full recovery. Based on the localized nature of my PVNS (one isolated lump), and my surgeon's prior successes with this treatment, he expects that my PVNS will be gone for good. Return to Index
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Date: Fri, Feb 20, 1998 at 11:41:06 (EST)
Poster: Marlene <##> To: Everyone Subject: Planning Surgeory Message: To all, I finally got an out-of-network referral to my ortho. surgeon, thanks to this page and the fact that I printed some of the articlse on PVS for my PCP to read. Because we are on an HMO it's taken me a long time to get this under way now I have to get it oked buy the insurance co. then I can get my surgeoy done. Thanks Return to Index
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Date: Thurs, Feb 19, 1998 at 11:38:10 (EST)
Poster: Marilyn <##> BigBoyT1@aol.com To: May Everaert Subject: Re: Surgery <##>Re: Surgery Message: Hi May, I just read your message..and this is the day of your surgery. My prayers are with you. May your surgeon make correct decisions and may your recovery be swift! Return to Index
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Date: Tues, Feb 17, 1998 at 17:27:46 (EST)
Poster: May Everaert <##> everaert@yucom.be To: Everyone Subject: Surgery Message: Hi to all, I will have surgery on Feb. 19, 1998, that's next thursday. I will be in hospital for about 10 days, my husband Patrick will keep the webpage alive then, and he will inform me about what's happening. I hope to be back soon ! Return to Index
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Date: Mon, Feb 16, 1998 at 20:03:09 (EST)
Poster: Lorri <##> Lorrigrl@aol.com To: none Subject: Re: PVNS<##>Re: PVNS Message: Hello, and welcome to our little club!!! I hope that you will find some useful information here. You will also find that there are other people out there that can relate to you. If you have any questions, there are a lot of us here willing to give our input. I hope you can use us to your advantage!! Return to Index
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Date: Mon, Feb 16, 1998 at 10:48:15 (EST)
Poster: shperry@aol.com <##> shperry@aol.com To: Josh Subject: Re: Back Again<##>Re: Back Again Message: well, its been about 6 years since my last surgeory and although i have had to deal with some pain, no swelling or internal bleeding. all that ended on fri. i got home from work and could feel it. since, it has swollen up to double size(although it has already gone back almost to normal) and i have had to get around on crutches when im not in bed. im hopin it will not happen again soon, but if so i guess its time for another operation. im so sick of this!! I have this same problem with surgery upcoming would love to speak to others about this... Return to Index
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Date: Mon, Feb 16, 1998 at 10:36:27 (EST)
Poster: none <##> shperry@aol.com To: Everyone Subject: PVNS Message: I am a long sufferer of this disease and I am going for surgery next week. I would love to speak with someone else suffering like I. This fluid really takes the best out of you. They are suppose to cut away at the lining of the knee. This is my second surgery. Please respond anybody to shperry@aol.com My name is sheldon perlysky and I'm 34 years old Return to Index
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Date: Sat, Feb 14, 1998 at 11:24:46 (EST)
Poster: Josh <##> To: Josh Subject: Re: Back Again<##>Re: Back Again Message: well, im all better!! i took my glucosaine and kept my knee wrapped and iced, and after 3 weeks of walking only when i had to and on cructches, im back to workin on the farm! maybe thats all ill see of it for a while! Return to Index
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Date: Thurs, Feb 12, 1998 at 22:50:00 (EST)
Poster: John Smead <##> sgenes@azstarnet.com To: Everyone Subject: PVNS Discussed @ Sydney Conference Message: My surgeon just returned from a conference in Sydney, Australia where PVNS was discussed. According to my doctor, the doctors in Sydney have been treating PVNS in the same manner as described in Article 8. That is, debulking as much of the tumor as possible and then following up with external beam radiation every day for five to seven weeks. The Sydney doctors claimed that they have several patients that have been in remission for 7 to 8 years. I have just completed three debulkings in September, November, and January. I go for my first radiation visit tomorrow. I will keep you posted. Return to Index
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Date: Sat, Feb 07, 1998 at 10:33:48 (EST)
Poster: Bruno Di Lullo <##> dilullob@execulink.com To: Everyone Subject: Great Site Message: I have been a regular visititor on this site for about nine months and I must congratulate May for your effort to keep this site going. I have learned so much from it. Please keep up the good work and know that we appreciate it very much. I really do beleive that we will come up with a answer to this horrible disease soon! Return to Index
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Date: Wed, Feb 04, 1998 at 21:59:59 (EST)
Poster: Lorrigrl@aol.com <##> Lorrigrl@aol.com To: Ellen Avery Subject: Re: hi.<##>Re: hi. Message: Hi Ellen-- Just wanted to drop you a note about a doctor in boston who has been doing studies on PVNS for quite some time. His name is Dr. Brick, and he is associated with Brigham and Womens Hospital. I am from Illinois, and my doctor interned with him. He came highly recommended from my doctor. Return to Index
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Date: Wed, Feb 04, 1998 at 16:02:17 (EST)
Poster: Siegfried Kroll <##> Siegfried.Kroll@t-online.de To: Everyone Subject: Operation with a laser Message: I have PVNS since more than 5 years. My doctor plan the next operation. It is already the 6. operation. But now he will use a laser to remove the synovia. Has another sufferer experience in this kind of operation ? Return to Index
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Date: Tues, Feb 03, 1998 at 22:10:04 (EST)
Poster: Marlene <##> To: May Everaert Subject: Re: PVNS strikes again... <##>Re: PVNS strikes again... Message: Hi May I to am looking at surgery again but in my ankle, I will have the cords in the back of my ankle stretched bone spurs taken off and as much pvs taken out as possible. I am going to check into the radiation when I start scheduling everything. Good Luck!! Marlene Return to Index
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Date: Tues, Feb 03, 1998 at 14:38:06 (EST)
Poster: May Everaert <##> everaert@yucom.be To: Everyone Subject: PVNS strikes again... Message: Hi to all, Yesterday I had an appointment with my Dr. at Antwerp to discuss the MRI and the condition of my leg. What's the news...... operating again(only the back side , just like in Jan 97): Doc told me there is still a large amount of PVNS, mostly in the back of my knee, there is also a large cyst (filled with fluid) at the back side of the knee, size of a walnut. Doc will remove the cyst and also he will remove as much of PVNS as possible, without damaging anything. Afterwards I have the choice: do nothing and wait, or radiation therapy. I still don't know what to do, I am a bit afraid of the radiation therapy. I still don't know what to do next. The operation will be due within the next weeks. Yeeeeaaak !!! It never stops .... At this moment the only hope I have is that the surgery will relief the tension of swelling of the knee. Bye, May Return to Index
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Date: Tues, Jan 27, 1998 at 22:15:58 (EST)
Poster: Marilyn <##> To: Josh Subject: Re: Back Again <##>Re: Back Again Message: Hey Josh, Sorry to hear that. This whole disease stinks, big time! But if you got 6 years between surgeries, you are doing better than some of us. The longest I ever got was 3 years, and that included radiation. Thank God for Motrin and try to keep it moving, that helps, I think. Return to Index
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Date: Tues, Jan 27, 1998 at 11:49:18 (EST)
Poster: Josh <##> jspark31@portland.maine.edu To: Everyone Subject: Back Again Message: well, its been about 6 years since my last surgeory and although i have had to deal with some pain, no swelling or internal bleeding. all that ended on fri. i got home from work and could feel it. since, it has swollen up to double size(although it has already gone back almost to normal) and i have had to get around on crutches when im not in bed. im hopin it will not happen again soon, but if so i guess its time for another operation. im so sick of this!! Return to Index
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Date: Sun, Jan 25, 1998 at 16:35:42 (EST)
Poster: Ezat Sadiq <##> uae1man@emirates.net.ae To: Everyone Subject: Going through a rough time Message: I know that we are going through a tough time right now. I wish there were something I could say or do to solve our problem. As it is, all we can do is offer our love and support and hope to each other . We are a wonderful, resourceful people and I'm confident that we can weather this storm. Some day, we may even look back on this time in our life and realize that we are a stronger, more confident people because of it. Please don't feel like you're going through this alone. You are in my thoughts every day and if there's anything I can do for you, I hope you'll let me know. Ezat Sadiq Return to Index
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Date: Thurs, Jan 22, 1998 at 13:14:39 (EST)
Poster: Ellen Avery <##> eavery@law.harvard.edu To: Everyone Subject: hi. Message: Wow. This place is great. So. I'm Ellen, I'm 27 and live up near Boston, MA. I've known about my PVNS for 7 years now, and was misdiagnosed for about 6 years before that. Just found out yesterday that its back in my right knee. Yech. Had an MRI last night, and see good old Dr. Mankin (@ Mass. General) again next Tuesday for a discussion about what to do (I've previously had two synovectomies). Yech. So fustrating. So very very fustrating. The hardest part in many ways is that so very few people have any idea about PVNS, and this is the first time I've come in contact with any fellow sufferers and well, this makes me very happy. There are times when people look at me when I tell them I am having a reoccurance and they have this wide-eyed gaze and ask "didn't you already have that taken care of" and its all I can do to just sigh. Sometimes its all so exhusting--physically and mentally. At any rate, I'll post again, but just wanted to introduce myself. Please feel free to email me, as well (I'd especially love to get in touch with anyone in the Northeast/Boston area). Thanks for being here. Hope you all have a (relatively) good day. e Return to Index
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Date: Wed, Jan 21, 1998 at 17:10:39 (EST)
Poster: May Everaert <##> everaert@yucom.be To: Everyone Subject: New link, try it out ! Message: Hello to all, I found a new very interesting link on the web, you should try it out ! Try Health A to Z, including search possibilities on Medline (a place where you can find summaries and titles of medical articles) Just follow this link : http://www.healthatoz.com/medline.htm and type in "pigmented villonodular synovitis", you will be amazed about the amount of articles written on PVNS ! Click on the name of the article and you will be able to read the summary of the article Bye, May Return to Index
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Date: Thurs, Jan 15, 1998 at 08:35:45 (EST)
Poster: Walt Taschek <##> wtaschek@aol.com To: Everyone Subject: Hyalgan Message: The FDA has approved Hyalgan (Hyaluronate for people suffering from painful arthritic knees. It is injected into the synovial fluid in a series of five injections and elimate the need for pain killers for six months. I know a lady who is undergoing treatment and after two weeks, severe pain has been greatly reduced. I don't know whether it does anything for PVNS. For more information check the web site: http://www.orthologic.com Walt Return to Index
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Date: Mon, Jan 12, 1998 at 01:15:22 (EST)
Poster: Lorrigrl <##> Lorrigrl@aol.com To: megan ratcliffe Subject: Re: pvns my history<##>Re: pvns my history Message: Hello, welcome to the elite group of pvns sufferers. I am currently on SSI, and I was approved first time around. I do not know if this was luk, or my being well prepared. I think that it will help you, if you bring as much information to their attention as possible. I think you can find many wonderful articles on this subject on the internet. It is also helpful to keep in touch with your adjudicator as much as possible on the status of your claim. I hope this info helps you, and good luck!! Believe me, it is great to have people that actually(or finally) can relate to what you are going through. Return to Index
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Date: Sat, Jan 10, 1998 at 01:28:40 (EST)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: megan ratcliffe Subject: Re: pvns my history <##>Re: pvns my history Message: Hi Megan, Welcome to our "disease club"! You will find a lot of support here and it helps some to hear other people's stories. But the sad truth is that there doesn't seem to be any good answer to all the "why" and "what next" questions. There is a lot of good information here so be sure to wander through all the different areas at this site. Good luck and welcome! Return to Index
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Date: Fri, Jan 09, 1998 at 02:36:59 (EST)
Poster: megan ratcliffe <##> MRatcl1484@aol.com. To: Everyone Subject: pvns my history Message: hi to you all. I am so delighted to have found fellow sufferers. I have suffered from this horrible disease now since 1989 and can find out so little info on the subject. I am currently awaiting my 4th synovectomy and also a bone graft on my shin bone my consultants, gps and local social security office do not believe that it is so dibilitating and i need any information i can get hold of to help me get over to these people how painful and how disabling this condition is will someone please write back. Return to Index
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Date: Mon, Jan 05, 1998 at 11:49:25 (EST)
Poster: Gayle <##> Sun.shine@nashville.com To: Marlene Subject: Re: pvs <##>Re: pvs Message: I actually gave my daughter, Trish, a bottle of glucosamine sulfate (with lots of literature) for Christmas. I purchased it from a chiropractor that I know, so that I felt I was buying a good quality. She told me she uses it for arthritis patients, and she has seen some real results on before and after x-rays. The dosage she suggested was 500 mg (one pill) 3 times a day for at least six weeks. She said it would definitely not be an overnight success, if it was to work at all - to try for at least six weeks. Trish has committed to giving this a trial. Meanwhile, I did some research on the web. Try http://www.nutrimart.com/GS.htm to see what they say about the product. I know they are selling it, but I found it very interesting that the information refers to "synovial fluid" at least five times. We are hopeful that in another four or five weeks, we will be able to tell you that Trish has achieved some relief from her current swelling and pain in her knee. Return to Index
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Date: Sat, Jan 03, 1998 at 14:51:48 (EST)
Poster: Jim Morrison <##> To: Ezat Sadiq Subject: Re: Villonodular synovitis of both knee <##>Re: Villonodular synovitis of both knee Message: Hi Ezat, My suggestion to you is that you should take the time and go through every section of this web site and see just what everyone of us, who has this disease has gone through. Look at some of the pictures of the disease, maybe that will give you an idea of what you have and why it keeps getting inflamed The picutres are not pretty. Read each persons story and I think you'll understand what you have to do. Right now we know of no easy solutions. I wish there was. I went for six years in between my third and forth operation. I thought they were bonus years, since my doctor told me I would most likely need an operation in two years. I was wrong. In that time the disease ate a tumor in my knee, just above the knee joint. It engulfed about 25% of my femur. I am now retired from my job as a mechanic at the age of 48, because of this disease. . Return to Index
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Date: Sat, Jan 03, 1998 at 01:46:48 (EST)
Poster: lorrigrl <##> Lorrigrl@aol.com To: Ezat Sadiq Subject: Re: Villonodular synovitis of both knee<##>Re: Villonodular synovitis of both knee Message: I have had Hydrocortizone shots injected once every two weeks--that seemed to help for about a year. Return to Index
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Date: Fri, Jan 02, 1998 at 18:45:01 (EST)
Poster: Josh <##> To: Marlene Subject: Re: pvs<##>Re: pvs Message: I have been taking it for about 4 months now. I found out about it myself, not from a doctor. I have experienced a lot less pain in the last few months than in the 6 months previous. I know this is a very tricky disease, so i hesitate to say that anything is "working" because i may have just been lucky these last few months, but i keep taking it, hopefully that is what is making the difference. Good luck! if you do try it, i would be very interested in hearing from you any results that you have had. Return to Index
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Date: Thurs, Jan 01, 1998 at 08:10:16 (EST)
Poster: Ezat Sadiq <##> uae1man@emirates.net.ae To: Everyone Subject: Villonodular synovitis of both knee Message: I am 30 years old male, working as a physiotherapist in AL Jazira Sports and Cultural Club in Abu Dhabi City, United Arab Emirates. I am suffering from Villonodular Synovitis of both knees and hoping to end my suffering . Here is my story with the grievous disease. As a kid, I remember having pain over the joints of both legs. I was examind many times and had a lot of blood tests with no clear diagnosis. I grew up normally, passed college, and army service with no problems. I started to suffer left shoulder pain in 1989, my shoulder was immobilized for 2 weeks. I took voltaren 50 mg of no avail, then I got one local infiltration and the pain disappeared next day. I had some right elbow pain in 1991 which was cleared by one week of physiotherapy ( Short waves and diadynamic currents.) In 1992, I suffered from swelling right knee puls pain for the first time. The examining doctor requested some stomach tests which proved negative. An operation (unspecified) was proposed but I declined and got a local infiltration of KINA-CORT which alleviated the pain. The same signs recurred at the end of 1993 and I underwent arthroscopy in Apri 1994. The biopsy test taken and revealed Villonodular Synovitis. The swelling recurred 2 weeks after the arthroscopy and aspiration (~ 110 cc of bloody fluid) and an infiltration of Kina-Cort were given. This gave me a pain-free knee for nearly 10 monthes. In 1995 I suffered and still from left knee swelling puls pain. I had aspiration (~ 75 cc of fluid) and a Deprafos infiltration and the problem was relieved. I spent one month in Portugal in 1995 in clod weather and believe this aggrevated the swellling in both knees. Upon return, both knees were aspirated ( ~ 45 cc (l) knee and ~ 110 cc (R) knee) and got Deprofes injections in both knees. This relieved the (L) knee for 10 mothes, but the (R) knee for 3 mothes. Altogether my (L) knee had 3 aspirations and 10 for the (R) knee. The list of medication over this period include:- - 4 injections of KINA-CORT for (R) Knee. - 4 injections of DEPROFOS for (R) knee. - 2 injections of DEPROFOS for (L) knee. - 15 boxes of VOLTRAEN tablets (50 mg). - 8 boxes of BRUFEN 400 mg. - 3 boxes of MEDROL 4 mg. - 10 boxes of ASPIRIN. This collection has provided short-term relieve only. At this stage I am looking for any NON- OPERATIVE treatment due to the time and economic requirements of the surgery. If you can help, kindly write back !!! Return to Index
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Date: Wed, Dec 31, 1997 at 17:33:16 (EST)
Poster: Nancy Schultz <##> Badne@aol.com To: Everyone Subject: Boston Follow-up Message: Hi Everyone - It has been quite awhile since I've looked on this homepage. So long that I didn't realize the switch in address. I wanted to update you with some news from Brigham and Women Hospital in Boston. I had 4 orthroscopic surgeries in Chicago where I live and found out about a Doctor in Boston who has been studying this disease. I went to him for an experimental radiation treatment and it grew back. He was totally opposed to orthroscopic surgery since some of the growth can occur outside the knee joint and is impossible to see during orthroscopic surgery. He also has a special technique to operating and getting out all the growth in the back of the knee. He opened me up front and back and after 9 weeks I went back out to him for another radiation injection. It took me 6 months to recover but I thank my lucky stars that I found him. It has now been 6 years and I've stayed clean, my knee is normal size and never gets swollen and I'm fairly active considering I had 5 knee surgeries. His associate called me last night from Boston to follow up on their patients. I told him about this web site and he said he would look it up. I know I told some of you about Brigham and Women Hospital and Dr. Brick before - has anyone followed up? They now have the largest population of patients with PVS. He has operated on 50 so far and is encouraged that the medical community will now start listening to their findings. Only 2 patients had regrowth which happened very soon after surgery. Another girl had surgery the same day I did and that was her first PVS surgery and she in doing wonderfully. Luckily she had a Dr. who sent her to Dr. Brick immediately. I tell you this not because I think it is the only answer but because I struggled for many years trying to find an answer and to me Dr. Brick was my miracle. If you need more information, please don't hesitate to e-mail me. If you have e-mailed me in the past please let me know how you are doing. Happy New Year to you all. May '98 be you "miracle" year! Return to Index
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Date: Tues, Dec 30, 1997 at 21:01:41 (EST)
Poster: Marlene <##> To: Everyone Subject: My pvs history Message: Hi everyone, This is my story, it all started when I was 15. I was practicing for a Basketball Tournament, when my left ankle got swollen after. My parents took me to an ortho Dr. he just figured I sprained it. My ankle was always a little swollen and some pain when active after that. I was a high school senior in 1978 exactly 2 years latter while practicing for the same basketball tournament it got swollen and sore again. This time the Dr. tried to draw fluid but could'nt get any. Sent me to another Dr. he tried to draw fluid and also failed. They put me in the hospital right away did an exploratory and a synovectomy, and thus I was diagnosed with pvs. About six months latter I had another synovectomy, and six months after that, and six months after that. I had 4 synovectomies in 3 years, I had a brace made so when I had alot of pain it helped immobilize my ankle so I could tollerate it. Then in 1988 I had my 5th synovectomy, after every operation I have lost mobility and gotten more arthritis to contend with. I have had periodic cortison injections that only helped for a short time, if at all and Dr.'s have tried to draw fluid but have never gotten any. I am now looking at number 6 in 1998, at which time The Dr.'s will take out the tumors, stretch my cords in the back of my leg and take care of the bone spurs that have developed. I am now 37 years old, married with a six year old son,(when I am able) I ride bike, roller skate and am an avid horse person. I started with a Dr. in Jamestown NY, and after the 2nd operation have gone to his consaulting Dr. in Buffalo NY. and he has been great. My husband and I recently got on line and are pleased to find you all. Now I am not alone, there are others who know the pain and how unpredictable it can be. Some days I can not hardly walk and others I can skate and work the pain out for awhile. Thanks for listening and look forward to getting more ideas and information. Marlene Return to Index
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Date: Tues, Dec 30, 1997 at 04:33:09 (EST)
Poster: Marilyn <##> BigBoyT1@aol.com To: Marlene Subject: Re: pvs <##>Re: pvs Message: I got it at Walmart. In the vitamin and herb section. I havn't taken enough of it yet to really know if it is doing anything for me or not. But hey, anything is worth a try! Return to Index
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Date: Mon, Dec 29, 1997 at 22:30:32 (EST)
Poster: Marlene <##> To: Everyone Subject: pvs Message: I would like to know more about glucoseamine sulfate. Do you get it from a Dr. or is this something you take on your own and what does it do for you. I have never heard of glucoseamine and I have suffered from pvs for 22 years with 5 open synovectomies and about to have another. Return to Index
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Date: Sun, Dec 21, 1997 at 21:48:21 (EST)
Poster: Jim <##> morrisja@jnlk.com To: Marilyn Subject: Re: Re: Re: Re: SSI-Disability <##>Re: SSI-Disability Message: I understand that it is different in every state. I also agree with Lorri, that you should take every bit of information on the disease that you can find. When I went, they didn't have the slightest idea what the disease is and at the time I didn't know were I could find anything. I even called the Women and Brigham University to try to get some information, but they told me they did'nt have any publications. It took me about ten months before I was denied twice. You should be able to call your local SSI office and ask them who your judicature is and their phone number. My third step is to go in front of a judge with a lawyer. Return to Index
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Date: Sun, Dec 21, 1997 at 17:54:29 (EST)
Poster: Lorri <##> Lorrigrl@aol.com To: Marilyn Subject: Re: Re: Re: Re: SSI-Disability <##>Re: SSI-Disability Message: I applied for SSI @ September and haven't heard back from them yet. How long did it take you to get an answer. Also, how do I know who my adjudicator is? I've had 5 surgeries and radiation within the last 7 years and it looks like I'll be doing it again soon. When you get information from SSI it usually has your adjudicators name and number in the top right hand of the letter. I really suggest that when you get your physical from the SSI doctor, that you bring as much info on the disease as possible. You can find some really good info on the net, or in your local medical library. Also, it is a good thing to call your adjudicator at least onca a week to check on the status of your claim. Ask them what is the best way to help yourself get approved. I hope I answered all your questions. Lorri Return to Index
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Date: Sun, Dec 21, 1997 at 02:00:17 (EST)
Poster: Marilyn <##> BigBoyT1@aol.com To: Lorri Subject: Re: Re: Re: SSI-Disability <##>Re: SSI-Disability Message: I applied for SSI @ September and haven't heard back from them yet. How long did it take you to get an answer. Also, how do I know who my adjudicator is? I've had 5 surgeries and radiation within the last 7 years and it looks like I'll be doing it again soon. Return to Index
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Date: Sat, Dec 20, 1997 at 00:45:52 (EST)
Poster: Lorri <##> To: Jim Morrison Subject: Re: Re: SSI-Disability <##>Re: SSI-Disability Message: To the people out there that are to the point that it is difficult to work anymore, I have some good news. It was becoming so difficult for me to work because of PVNS to the knee, that a friend of mine suggested that I apply for social security. I did--i was approved to recieve disability benefits and i only have to be re-checked every three years. I hope that this info can help some of you that are to the point of PVNS that i am at. I know that it eases my mind to know that i dont have to suffer at work anymore to suport my family. Hi Lorri, I'm new to the group. I have had four operations in the last thirteen to fourteen years and I was a mechanic at the company I worked for. I've been off of work for about a year now. I am in the process of trying to get SSI myself. I've been rejected twice. Now I must go before a judge to see if I can be accepted. How far did you have to go, before you were approved? This is good news. Any tips? Jim, I was approved the first time around. I really dont know the reason that I was approved so quickly, but I called my adjudicator alot(probably to the point she figured that if she didnt approve me, I would bug her even more). I have had 10 surgeries, and have had radiation. I really think that that also played a part of getting approved. Good Luck, I hope that you will be approved soon. Lorri Return to Index
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Date: Fri, Dec 19, 1997 at 10:11:30 (EST)
Poster: Jim Morrison <##> morrisja@jnlk.com To: LORRI Subject: Re: SSI-Disability <##>Re: SSI-Disability Message: To the people out there that are to the point that it is difficult to work anymore, I have some good news. It was becoming so difficult for me to work because of PVNS to the knee, that a friend of mine suggested that I apply for social security. I did--i was approved to recieve disability benefits and i only have to be re-checked every three years. I hope that this info can help some of you that are to the point of PVNS that i am at. I know that it eases my mind to know that i dont have to suffer at work anymore to suport my family. Hi Lorri, I'm new to the group. I have had four operations in the last thirteen to fourteen years and I was a mechanic at the company I worked for. I've been off of work for about a year now. I am in the process of trying to get SSI myself. I've been rejected twice. Now I must go before a judge to see if I can be accepted. How far did you have to go, before you were approved? This is good news. Any tips? Return to Index
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Date: Wed, Dec 17, 1997 at 23:19:50 (EST)
Poster: LORRI <##> lorrigrl@aol.com To: Everyone Subject: SSI-Disability Message: To the people out there that are to the point that it is difficult to work anymore, I have some good news. It was becoming so difficult for me to work because of PVNS to the knee, that a friend of mine suggested that I apply for social security. I did--i was approved to recieve disability benefits and i only have to be re-checked every three years. I hope that this info can help some of you that are to the point of PVNS that i am at. I know that it eases my mind to know that i dont have to suffer at work anymore to suport my family. Return to Index
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Date: Wed, Dec 17, 1997 at 23:19:43 (EST)
Poster: LORRI <##> lorrigrl@aol.com To: Everyone Subject: SSI-Disability Message: To the people out there that are to the point that it is difficult to work anymore, I have some good news. It was becoming so difficult for me to work because of PVNS to the knee, that a friend of mine suggested that I apply for social security. I did--i was approved to recieve disability benefits and i only have to be re-checked every three years. I hope that this info can help some of you that are to the point of PVNS that i am at. I know that it eases my mind to know that i dont have to suffer at work anymore to suport my family. Return to Index
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Date: Sat, Dec 13, 1997 at 21:01:33 (EST)
Poster: Mike Caddell <##> kat@rmi.net To: Everyone Subject: Glucosamine Message: I have been taking glucosamine for about 1 year now, and I can really tell when I don't take it. I have a lot more pain when I don't take it. I don't know if my joints are any better, but it helps the pain. Return to Index
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Date: Tues, Dec 09, 1997 at 19:57:14 (EST)
Poster: Walt Taschek <##> wtaschek@aol.com To: Everyone Subject: glucoseamine sulfate Message: I too have been taking glucoseamine sulfate and I think it has helped. I just had a six month follow-up visit at Johns Hopkins and my Doctor and I feel my knee is better. My Doctor doesn't mentioned that there are several studies underway in the US but the findings are not yet published. He said it was OK to keep taking it. I plan to try stop taking it for a while to see if things get worse. For those taking it, what is the doseage your are using? Walt Return to Index
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Date: Tues, Dec 09, 1997 at 19:57:10 (EST)
Poster: Walt Taschek <##> wtaschek@aol.com To: Everyone Subject: glucoseamine sulfate Message: I too have been taking glucoseamine sulfate and I think it has helped. I just had a six month follow-up visit at Johns Hopkins and my Doctor and I feel my knee is better. My Doctor doesn't mentioned that there are several studies underway in the US but the findings are not yet published. He said it was OK to keep taking it. I plan to try stop taking it for a while to see if things get worse. For those taking it, what is the doseage your are using? Walt Return to Index
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Date: Mon, Dec 08, 1997 at 14:12:30 (EST)
Poster: jane <##> jbradley@hpnc.com To: Dr. DAvid Caraballo Subject: Re: PVS <##>Re: PVS Message: I want to know others with the same sickness.... Hi Dr. Caraballo I am Jane; I have the sickness. Open synovectomy July 16, 1997. MRI to be scheduled in 6 months. Just diagnosed this year. Welcome any comments from a professional. Return to Index
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Date: Mon, Dec 08, 1997 at 13:23:28 (EST)
Poster: jane <##> jbradley@hpnc.com To: Josh Subject: Re: Re: Re: Re: Re: PVNS <##>Re: PVNS Message: Re glocosamine, chrondroitin, and natural supplements. My surgeon replies, "I do not know what is in that stuff; it is not tested." The only thing I could get her to concur with was my purchasing a juicer and juicing fruits and veggies. I have used the above two supplements sporadically; it defi nitely did take away arthritic pain. Recommend you read THERE IS A CURE FOR ARTHRITIS. He thoroughly discusses the use of these and other supplements. Jane Return to Index
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Date: Tues, Dec 02, 1997 at 00:00:42 (EST)
Poster: Brad Hill <##> ginny@hal-pc.org To: Everyone Subject: I'm 16y/o with PVNS Message: I am a 16y/o male, living in the USA. I have an appointment wit my dr. to secdual my 4th knee surgery. I have been suffering from PVNS in the left knee since 3rd or 4th grade. Please return my message and e-mail my with your case. I am very interested to hear about it. Return to Index
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Date: Mon, Dec 01, 1997 at 23:59:28 (EST)
Poster: Brad Hill <##> ginny@hal-pc.org To: Everyone Subject: PVNS Message: I am a 16y/o male, living in the USA. I have an appointment wit my dr. to secdual my 4th knee surgery. I have been suffering from PVNS in the left knee since 3rd or 4th grade. Please return my message and e-mail my with your case. I am very interested to hear about it. Return to Index
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Date: Mon, Dec 01, 1997 at 23:54:35 (EST)
Poster: Brad Hill <##> ginny@hal-pc.org To: Jackie Streich Subject: Re: 14 years old with pvns<##>Re: 14 years old with pvns Message: 14 years old with PVNS Jackie, My name i Brad Hill and I am 16y/o Male living in the USA. I am gitting ready to have my 4th knee surgery. I have been suffering from PVNS sinc 3rd or 4th grade. PVNS has invaded my Left Knee. I am interested in hearing about your case. Please e-mail me at ginny@hal-pc.org My time is limited( I got to get back to doing HW). Sincerly Brad Hill Return to Index
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Date: Mon, Dec 01, 1997 at 22:55:56 (EST)
Poster: Dawn Piasta <##> dmpiasta @mb.sympatico.ca To: Marilyn Subject: Re: Glucosamine Sulfate<##>Re: Glucosamine Sulfate Message: I finally came to the realization that surgery and the doctors weren't going to make me all better and so I'd best be trying something on my own. This week I started taking Glucosamine Sulfate and also Calcium in hopes of building up my bones and joint fluids, etc. I would like to hear from anyone else who is taking Glucosamine. I'm wondering if I will know it is working, any signs???, or do I just wait for the next MRI scan and see if things got worse or better or stayed the same. Marilyn: Faithfully take the Glucosamine for about a month. Then when you are feeling good, stop cold turkey. I can almost guarantee that you will be back taking it ASAP. This ia what I was told to do and it proved that it works on me. I don't have to take it regularly now only when I have alot of pain. I have been on GS for over a year now. I take the 1000mg without Sodium. Good Luck Dawn Return to Index
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Date: Sat, Nov 29, 1997 at 11:22:42 (EST)
Poster: Marilyn <##> BigBoyT1@aol.com To: Everyone Subject: Glucosamine Sulfate Message: I finally came to the realization that surgery and the doctors weren't going to make me all better and so I'd best be trying something on my own. This week I started taking Glucosamine Sulfate and also Calcium in hopes of building up my bones and joint fluids, etc. I would like to hear from anyone else who is taking Glucosamine. I'm wondering if I will know it is working, any signs???, or do I just wait for the next MRI scan and see if things got worse or better or stayed the same. Return to Index
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Date: Fri, Nov 21, 1997 at 13:22:24 (EST)
Poster: Josh <##> To: Gayle Subject: Re: Re: PVNS <##>Re: PVNS Message: Well, the DMSO I have is just lab grade and it is like a gel, so I suppose that it would be similar to a salve. Yes, I just rub it on my knee when it aches and it releives the pain in about 30 seconds. I have read some amazing reports that claim it as a "miracle drug" as you put it. You should do a net search on it if you want more background. There are also possible side-effects, but I'm not concerned because i use such small doses so infrequently. I also think that glucosamine sulfate helps. I take that daily and since I have started taking that (which was the same time I started using DMSO when it hurt: about 4 months ago) I have had almost no pain at all. good luck, and let me know what you decide and what you get for results!! Return to Index
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Date: Fri, Nov 21, 1997 at 00:28:38 (EST)
Poster: Gayle <##> Sun.shine@nashville.com To: Josh Subject: Re: PVNS <##>Re: PVNS Message: I was extremely interested when I read that you use DMSO, especially since you mentioned that you work on a farm. My large animal vet swears by DMSO. He gives it to us for the horses just to keep around for general usage, and he has been know to use it on himself. We call it his miracle medicine. However, the only application we've ever know about is on an open wound. Do you just spread the salve on your PVNS affected area, or do you have it in a form other than a salve? I'm really interested because my daughter, Trish, would be more than glad to try it on her knee. We already are believers in this medication. Thanks in advance. Return to Index
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Date: Fri, Nov 21, 1997 at 00:20:13 (EST)
Poster: Marilyn <##> To: May Everaert Subject: Re: Re: Re: Re: knee replacement <##>Re: knee replacement Message: I took my reports and went to see the doc on Tuesday. The reports and MRI scan and x-ray were awful. But doc said that he treats symptoms not reports. We talked a lot about bone erosion and I think I've finally got a new insight about it. Apparently it is the blood in the joint, not the tumors, that erode the bones. When the bones become damaged, osteoarthritis sets in and can be quite painful. When this pain becomes bad, then it is time to replace the joint. With a new joint in place, it really doesn't matter so much if the tumors are there or not because it was the blood/bone erosion/arthritis that caused the pain in the first place. I asked about the inability to have MRI scans after the replacement, and doc mentioned several other ways to "see" into the leg to watch the tumors and PVNS progression...probably not as clearly as an MRI, but plenty good enough to see if the tumors are growing. At this point I'm not ready for any more surgery and doc isn't pushing it. I go back in 4 months with more MRI scans and x-rays. Doc thinks I'm too young to start this total knee replacement mess and that's OK with me. For now I'm just going to enjoy the holidays and try not to worry about what comes next. Return to Index
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Date: Fri, Nov 21, 1997 at 00:04:36 (EST)
Poster: Marilyn <##> BigBoyT1@aol.com To: Josh Subject: Re: Re: Re: Re: Re: PVNS <##>Re: PVNS Message: Sorry Josh, when I got to USC, I realized that I hadn't taken the names of these things with me. I tried to talk to doc about them, but without the exact names I didn't get very far. He was of the opinion that somethings do work but be careful. Return to Index
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Date: Thurs, Nov 20, 1997 at 15:44:37 (EST)
Poster: May Everaert <##> everaert@yucom.be or pvns@oocities.com To: Marilyn Smith Subject: Re: Re: Re: knee replacement <##>Re: knee replacement Message: Hi Marilyn, No I didn’t have an MRI yet, I have to make an appointment soon, but just as you I am not really in the mood for having it all again. Normally it should be routine, but I don’t think the results will be very well. My knee is still very swollen, I think our Mr. PVNS is just doing his job: growing and enjoying his destructing life. In spite of this all we have to keep an eye on it, before Mr. PVNS goes too far. I can really understand how you are feeling Marilyn . The problem is that one doesn’t know how long to wait before something is done. I would also like to thank you for all your support Marilyn , sharing problems really makes it more bearable . Return to Index
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Date: Wed, Nov 19, 1997 at 11:31:22 (EST)
Poster: Josh <##> To: Marilyn Subject: Re: Re: Re: Re: PVNS <##>Re: PVNS Message: Hey, let my know what your doctor says, i'm curious to hear a professional opinion. Return to Index
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Date: Sun, Nov 16, 1997 at 02:03:34 (EST)
Poster: John Smead <##> sgenes@azstarnet.com To: becky Subject: Re: pvns:help <##>Re: pvns:help Message: Hello Becky, I have been sufferering with pvns since 1989. I live in Marana, AZ anad have received most of my treatment at the University Medical Center. In fact I just completed surgery number five on September 15, and number six on November 3. I am sceduled to begin radiation treatments in about four weeks. My orthopedic doctor is Donald Speer at UMC. If I can help in any way my email address is sgenes@azstarnet.com Good Luck. Return to Index
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Date: Sun, Nov 16, 1997 at 01:12:46 (EST)
Poster: John Smead <##> sgenes@azstarnet.com To: Marilyn Smith Subject: Re: It's back again...yuk! <##>Re: It's back again...yuk! Message: I haven't talked to you for some time, but just read your post and wanted you to know I'm thinking of you. I just got out og the hospital. I had surgery number 5 on September 15, and number 6 on November third. Like you, I dreaded going in again but knew I had to. Both surgeries went well and I am begining to feel human again. If everything goes well I will start radiation treatments in four weeks. God bless you. John Smead Return to Index
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Date: Thurs, Nov 13, 1997 at 10:14:26 (EST)
Poster: Marilyn <##> BigBoyT1@aol.com To: Josh Subject: Re: Re: Re: PVNS <##>Re: PVNS Message: I haven't used either of these drugs you have mentioned but I plan to discuss them with my doctor next week. They may be unorthodox, but if they work...they work! Thanks for the information. Best wishes to you. Return to Index
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Date: Thurs, Nov 13, 1997 at 10:10:33 (EST)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: May Everaert Subject: Re: Re: knee replacement <##>Re: knee replacement Message: Hi May, Have you had your MRI scan done yet? Hope your results are good. Are you having problems again or is this just routine? I'm praying for you. I've put off going back to the doctor for about as long as I can. I have an appointment next week. I've already read my MRI scan report and it doesn't look good....but I've decided not to let them cut on me again until I'm absolutely falling down! I really, really, really love this web site. It has made this disease a lot more bearable. Thanks so very much to you and Patrick and your family. Return to Index
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Date: Tues, Nov 11, 1997 at 14:58:50 (EST)
Poster: Josh <##> To: Marilyn Subject: Re: Re: PVNS <##>Re: PVNS Message: I forgot to add: I also take glycoflex, which is a glucosamine sulfate source. I have read many good things about this and started taking it about the same time i began using DMSO. If you use either of these, please let me know what kind of success you have. Return to Index
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Date: Tues, Nov 11, 1997 at 14:34:17 (EST)
Poster: Josh <##> To: Marilyn Subject: Re: Re: PVNS <##>Re: PVNS Message: Hi. no, I don't have any problems with the joint being weak, but I do have an ache, that is now always there, but in cold weather it often aches, also if i stand in one position for a long time without moving much, or walk on hard surfaces. I find that by wearing good hiking boots all the time or any shoes with good padding on the bottom, that makes a huge difference. DMSO is short for dimethylsulfoxide. I dont know if you have any chemistry background, but it is a very common solvent. I use it very infrequently now, but when i first got it, i used it almost every night for about 3-4 weeks. You can do a net search on it and get a lot of info, plus you can order it online. i try to use it only when necessary because not much work has been done on it concerning any side effects, but it looks like there may be some, but it seemed to help. I was experiencing pain almost every day, esp. at night after workin all day, but after those first few weeks, it has only very rarely bothered me. i dont know if it w as the DMSO or not, but the DMSO definately took care of the pain i was experiencing at the time. Return to Index
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Date: Mon, Nov 10, 1997 at 09:36:17 (EST)
Poster: Marilyn <##> BigBoyT1@aol.com To: Josh Subject: Re: PVNS <##>Re: PVNS Message: Hi Josh, I am interested in your "spin" on treatment. What is DMSO? Also, I wonder about bone errosion...are you having any trouble with weak joint or falling down? I agree that activity keeps the swelling down. Return to Index
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Date: Tues, Nov 04, 1997 at 20:36:15 (EST)
Poster: Josh <##> jspark31@portland.maine.edu To: Everyone Subject: PVNS Message: I was diag with pvns when i was about 13-14 but had been suffering from intermittent symptoms for about 4-5 years previous to that. I had my first surgery at 15 and that helped for 1 year, then had to have a second when i was 17. symptoms re-appeared about 4 months after surgery. My doctor had my try taking high doses of ibuprofin to see if this would affect the swelling at all and maybe help the pain as well. after a couple months of this, my liver shut down from too much motrin(I think that was the cause) which made me quite sick for a long time.At this point i basically said to heck(not those exact, but close enough) with doctors and stopped seeing anyone. for a couple years, i was very careful of what i did, slept every night with my knee elevated and usually wrapped with an ace bandage and iced it almost every night. after about a year, all pain had stopped and no more swelling. I has now bee almost 7 years since that last surgery-i have pain fairly frequently which i actually treat with DMSO and have (at least) 2 small tumors, but i just keep on keepin on. I work in a genetics lab, but also on a farm- i think keepin the strain on it of workin all the time is good. i go hiking and walking, i really think that this helps and i also take some different vitamins and supplements that help in cartilage regeneration. Although i know ill prob need surgery again. im just glad to have found this page Return to Index
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Date: Tues, Nov 04, 1997 at 20:17:12 (EST)
Poster: Josh jspark31@portland.maine.edu <##> To: Stephen Creech Subject: Re: Re: Internal bleeding/PVNS/HELP<##>Re: Internal bleeding/PVNS/HELP Message: Sorry, i forgot to mention that yes, when the fluid was removed from my knee it was always dark and looked like dark blood. Return to Index
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Date: Tues, Nov 04, 1997 at 20:13:52 (EST)
Poster: Josh Sparks <##> To: Brenda Davis Subject: Re: Internal bleeding/PVNS/HELP<##>Re: Internal bleeding/PVNS/HELP Message: Yes, I have PVNS and I used to have an incredible amount of internal bleeding. My entire knee would swell up to the point that it would hurt. I soon got to the point that I could tell when it was starting, because I would feel a slight pressure and found that if I applyed immediate pressure(tight ace bandage), elevated my knee, and packed it with ice it would usually stop the bleeding before it got too bad. since about 6 months after my last athroscopic (about 7 years ago) it hasnt bled at all, but i now have at least 2 tumors(can feel the buggers) and it aches a lot, especially when its cold out Return to Index
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Date: Wed, Oct 29, 1997 at 11:30:51 (EST)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: Bruno Di Lullo Subject: Re: MRI Questions? <##>Re: MRI Questions? Message: You probably don't have to ask anything. He will tell you what is there. You are hoping that it doesn't show any bone erosion or joint effusion. Soft Tissue Mass and Synovial Proliferation means tumors. There should be info about your ligaments and minisci (cartlege). You want it to say ligaments are intact and minisci has no tears. Ask for a copy of the written report. It will say a lot of mumbo-jumbo, but at the end of it should be a "Conclusion" section. That is where you can really see what they found. Good Luck! Marilyn Return to Index
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Date: Mon, Oct 27, 1997 at 15:22:40 (EST)
Poster: Patrick Mailleux <##> mailleuxpatrick@skynet.be To: Dawn Piasta Subject: Re: MRI <##>Re: MRI Message: MRI is not a form of radiation ( it is a kind of large magnet). Up to now, no real side effect has been described, but some care has to be taken for early pregnancy Return to Index
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Date: Sun, Oct 26, 1997 at 14:04:34 (EST)
Poster: Bruno Di Lullo <##> dilullob@execulink.com To: Everyone Subject: MRI Questions? Message: I just had an MRI done on both knees on Friday, Oct. 24. I will be seeing my surgeon soon to discuss the results. What are some good questions to ask my orthapedic surgeon? Return to Index
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Date: Wed, Oct 22, 1997 at 16:43:28 (EDT)
Poster: May Everaert <##> patrickb@glo.be To: Marilyn Smith Subject: Re: knee replacement <##>Re: knee replacement Message: A few months ago, I met another PVNS sufferer here in Belgium. He is suffering from PVNS since a long time, diagnosed in 1978, 8 operations, second prothesis in the knee, the disease is not cured at all, notwithstanding the prothesis, suffers from pain in the knee, sciatical nerve becomes compressed as a side effect.(the nerve is compressed between the metal of the prothesis and the PVNS) I have seen his leg, it looks nicer than mine, less swollen, but the PVNS is still there, maybe less active. Another consequence is that you lose the MRI diagnosis, because of the metal in the prothesis no MRI can be made.My doctor said that it is no answer to the problems of PVNS, to be delayed as long as possible. Marilyn I really sympathize with you, I really hope one day someone will show up on these webpages totally cured. Keep us informed, my next MRI is planned in November. Return to Index
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Date: Sun, Oct 19, 1997 at 23:50:31 (EDT)
Poster: Barbara <##> iconsign @aol.com To: Everyone Subject: Help: Anyone in elbow ?? Message: I have been told that I have PVS in my elbow. I have been told I need a third surgery. I noticed that almost all have this disease in their knees. Has anyone ever heard of it being in an elbow ??? I would appreciate your response. Thanks Barb Return to Index
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Date: Sun, Oct 19, 1997 at 09:52:48 (EDT)
Poster: Walt Taschek <##> To: Marilyn Smith Subject: Re: knee replacement <##>Re: knee replacement Message: I haven't had the knee replacement but Doctors at Johns Hopkins said that knee replacement doesn't stop PVNS therefore it is important to remove all PVNS growth at the same time as doing the knee replacement. Sorry for the bad news. I hope better luck is in store. I haven't heard anyone speak of cryosurgery as done at Stanford. Walt Return to Index
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Date: Sat, Oct 18, 1997 at 23:55:28 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: Everyone Subject: knee replacement Message: I would like to hear from anyone who has had a knee replacement because of PVNS. I want to know if it stopped the disease or if you still get tumors. Return to Index
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Date: Sat, Oct 18, 1997 at 23:48:25 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: Everyone Subject: It's back again...yuk! Message: I just picked up the reports from my MRI scan that I had done on Tuesday. It says that the tumor is back in the back side of my leg and all in my knee joint. My tibia, femur, and patella are all severely eroded......DOESN'T THIS EVER END? I see my doc on Tuesday. Pray for me. I can't stand the thought of surgery again so soon. It's only been 7 months since the last one. Return to Index
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Date: Thurs, Oct 16, 1997 at 03:22:04 (EDT)
Poster: lorri <##> To: May Everaert Subject: Re: Re: pvns <##>Re: pvns Message: Welcome to this select club of PVNS sufferers. It seems that PVNS can start early in one’s life. That’s a shame, and it is a pity that no valuable solution to this disease is found yet. You have had a large amount of treatment, all without results? I wonder what kind of radiation treatment you have had, and what your range of movement is now? I have had several operations too and treatment with radioactive Yttrium. But my knee is still very swollen and the PVNS is still growing (although it has slowed down due to the Yttrium). I am now focusing on radiation treatment, visiting a radiotherapeutic doctor. The doctor I visited says there is a chance that radiation treatment might give good results ! I am happy that you found this page and are able to talk with others, I think you have felt being alone with this (bastard of a) disease during the previous 15 years. i had external beam radiation, but i dont know the dosage. my doctor wants to send me to doctor brick in boston to do the yttrium treatment. i cannot bend my knee to even 90 degrees. the radiation did not stop the reaccurance. i had a synovectomy in december 96 radiation in january 97 and the pvns is allready back--lucky me. Return to Index
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Date: Thurs, Oct 16, 1997 at 03:21:59 (EDT)
Poster: lorri <##> To: May Everaert Subject: Re: Re: pvns <##>Re: pvns Message: Welcome to this select club of PVNS sufferers. It seems that PVNS can start early in one’s life. That’s a shame, and it is a pity that no valuable solution to this disease is found yet. You have had a large amount of treatment, all without results? I wonder what kind of radiation treatment you have had, and what your range of movement is now? I have had several operations too and treatment with radioactive Yttrium. But my knee is still very swollen and the PVNS is still growing (although it has slowed down due to the Yttrium). I am now focusing on radiation treatment, visiting a radiotherapeutic doctor. The doctor I visited says there is a chance that radiation treatment might give good results ! I am happy that you found this page and are able to talk with others, I think you have felt being alone with this (bastard of a) disease during the previous 15 years. i had external beam radiation, but i dont know the dosage. my doctor wants to send me to doctor brick in boston to do the yttrium treatment. i cannot bend my knee to even 90 degrees. the radiation did not stop the reaccurance. i had a synovectomy in december 96 radiation in january 97 and the pvns is allready back--lucky me. Return to Index
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Date: Thurs, Oct 16, 1997 at 03:17:26 (EDT)
Poster: lorri <##> To: MIlica Rouse Subject: Re: Re: Re: Re: pvns<##>Re: pvns Message: it was the traditional external beam--i have to warn you that it really caused my arthritis to worsen to the point i am about to start walking with a cane. besides extreme fatigue those were the only side affects. good luck Lorri, Do you remember what the dose was that was used for your treatment? My doctor is keeping mine moderate to avoid an increased cancer risk and joint stiffening which he says are associated with the higher doses. I will be dealing with arthritis either way, as such changes are already present. i dont remember the dosage, but he did say i could contract cancer in the next ten years. Return to Index
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Date: Tues, Oct 14, 1997 at 10:05:18 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: Dawn Piasta Subject: Re: MRI <##>Re: MRI Message: Hi Dawn! This morning I am going in for my 13th MRI scan of my left knee. So far my leg hasn't fallen off or anything......I don't believe that there are side effects to this method because it doesn't involve radiation. Return to Index
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Date: Wed, Oct 08, 1997 at 10:26:34 (EDT)
Poster: MIlica Rouse <##> To: lorri Subject: Re: Re: Re: pvns<##>Re: pvns Message: it was the traditional external beam--i have to warn you that it really caused my arthritis to worsen to the point i am about to start walking with a cane. besides extreme fatigue those were the only side affects. good luck Lorri, Do you remember what the dose was that was used for your treatment? My doctor is keeping mine moderate to avoid an increased cancer risk and joint stiffening which he says are associated with the higher doses. I will be dealing with arthritis either way, as such changes are already present. Return to Index
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Date: Wed, Oct 08, 1997 at 10:12:08 (EDT)
Poster: Milica Rouse <##> To: Milica Rouse Subject: Re: Dr.'s appointment today<##>Re: Dr.'s appointment today Message: Well it's a go on the surgery and radiation. I will have the surgery October 16 or October 30, then 2 weeks recovery, then 15 radiation treatments over 3 weeks. My doc seemed impressed with the article and admits that the results were impressive and worth a try. Return to Index
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Date: Tues, Oct 07, 1997 at 22:38:43 (EDT)
Poster: lorri <##> lorrigrl@aol.com To: May Everaert Subject: Re: Re: pvns <##>Re: pvns Message: May--i had traditional external radiation--it caused my arthritis to be much worse--to the point i may have to use a cane. the other side affect was extreme fatigue and a sunburn in that area. good luck---lord knows we all need it!!! Return to Index
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Date: Tues, Oct 07, 1997 at 22:35:49 (EDT)
Poster: lorri <##> lorrigrl@aol.com To: Milica Rouse Subject: Re: Re: pvns<##>Re: pvns Message: it was the traditional external beam--i have to warn you that it really caused my arthritis to worsen to the point i am about to start walking with a cane. besides extreme fatigue those were the only side affects. good luck Return to Index
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Date: Tues, Oct 07, 1997 at 22:33:04 (EDT)
Poster: Dave Silver <##> dsilver@delnet.net To: Dawn Piasta Subject: Re: MRI<##>Re: MRI Message: The MRI seems like the way to go for keeping an eye on the PVS, but, has anyone heard about when too many MRI's will start to cause problems. They are a form of radiation aren't they. So far I have had 3, and each time with almost 1 hour of scans. When is it too much? Something to consider ? {:] Dawn Unlike an X-ray, an MRI scan doesn't involve ionizing radiation. The "M" stands for magnetic, meaning that it uses strong magnetic fields instead. There's been some debate lately about the health effects of magnetic field exposure, but the most recent studies I've seen show very little correlation between MF exposure and disease. That was for MFs from power lines, though, and your level of exposure may be different. I'd ask your doctor. Return to Index
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Date: Tues, Oct 07, 1997 at 17:12:44 (EDT)
Poster: May Everaert <##> patrick@glo.be To: LORRI Subject: Re: pvns <##>Re: pvns Message: Welcome to this select club of PVNS sufferers. It seems that PVNS can start early in one’s life. That’s a shame, and it is a pity that no valuable solution to this disease is found yet. You have had a large amount of treatment, all without results? I wonder what kind of radiation treatment you have had, and what your range of movement is now? I have had several operations too and treatment with radioactive Yttrium. But my knee is still very swollen and the PVNS is still growing (although it has slowed down due to the Yttrium). I am now focusing on radiation treatment, visiting a radiotherapeutic doctor. The doctor I visited says there is a chance that radiation treatment might give good results ! I am happy that you found this page and are able to talk with others, I think you have felt being alone with this (bastard of a) disease during the previous 15 years. Return to Index
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Date: Tues, Oct 07, 1997 at 10:03:25 (EDT)
Poster: Dawn Piasta <##> dmpiasta@mb.sympatico.ca To: Everyone Subject: MRI Message: The MRI seems like the way to go for keeping an eye on the PVS, but, has anyone heard about when too many MRI's will start to cause problems. They are a form of radiation aren't they. So far I have had 3, and each time with almost 1 hour of scans. When is it too much? Something to consider ? {:] Dawn Return to Index
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Date: Tues, Oct 07, 1997 at 09:44:30 (EDT)
Poster: Milica Rouse <##> rouse@primary.net To: Heather Subject: Re: re:pvs<##>Re: re:pvs Message: my daughter who is 11 has pvs . what will we expect after she has her surgery. the dr. is going to use the scope . Hi Heather, I wish your daughter and your family the best of luck with her treatment! Her recovery from the scope should be rapid. I have had my knee done with the scope on multiple occasions and the recovery time was minimal with very little discomfort. Your daughter's future prognosis will depend greatly on the type of PVS she has. The localized form is much easier to get rid of, and the scope may well be all she needs to have done. If she has the diffuse form of the disease she may have quite a battle ahead, and the scope may be just the beginning, with common treatments including total synovectomy and various forms of radiation. It can be quite frustrating. I hope all goes well! Return to Index
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Date: Tues, Oct 07, 1997 at 09:35:51 (EDT)
Poster: Milica Rouse <##> rouse@primary.net To: LORRI Subject: Re: pvns<##>Re: pvns Message: Hi Lorri, I think we all feel the way you do when we first come across this site! It's like finding an oasis in the desert! It sounds like you have been through a lot in the past 15 years. You said you have had radiation, was it traditional external beam radiation, or on of the injection types? I am looking at the possibility of pairing my next surgery with radiation and would appreciate any input or advise. Thanks! Return to Index
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Date: Tues, Oct 07, 1997 at 09:30:00 (EDT)
Poster: Milica Rouse <##> rouse@primary.net To: Everyone Subject: Dr.'s appointment today Message: I saw my doctor last week, he is pretty certain that the PVNS is back. I went in for an MRI on Tuesday and in addition to doing my knee they ended up doing a series on my lower leg as well. I will be getting the results today at my follow-up appointment. My doctor has agreed to look at the article that was posted on the web site on radiation for high risk cases. He seems skeptical that I could come up with a reasonable treatment option without him. (I told him about the site)He said if the radiation dose was moderate he is willing to consider the treatment. I am keeping my fingers crossed. At this point I am willing to try almost anything! I'll update you later. Return to Index
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Date: Sat, Oct 04, 1997 at 00:01:56 (EDT)
Poster: LORRI <##> http://aol.nazzty1,com To: Everyone Subject: pvns Message: HELLO PEOPLE!! I AM SO GLAD THAT I HAVE FINALLY HAD A CHANCE TO READ ABOUT REAL PEOPLE WITH PVNS. I WAS DIAGNOSED WITH PVNS WHEN I WAS 12 YEARS OLD. I AM NOW 27 AND HAVE HAD 10 SURGERIES. I HAVE HAD RADIATION ALSO. I HOPE THAT THERE IS SOME WAY TO KEEP THE REACCURANCE AWAY WHEN I HAVE MY NEXT SURGERY. ANY IDEAS WOULD BE GREATLY APPRECIATED. Return to Index
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Date: Tues, Sep 30, 1997 at 23:49:42 (EDT)
Poster: Dave Silver <##> dsilver@delnet.net To: Heather Subject: Re: re:pvs<##>Re: re:pvs Message: my daughter who is 11 has pvs . what will we expect after she has her surgery. the dr. is going to use the scope . I was 11 when I had my first PVNS operation. It wasn't with a scope & wasn't a synovectomy since they thought it was something else prior to the first operation. Over the next couple of years, I had synovectomies done to both of my knees. They were not with a scope, though, since a scope wasn't widely used for that kind of surgery, yet. It was fairly painful afterwards and I had lots of physical therapy. I spent a significant amount of time on crutches after each surgery. I also had to stay home from school for some period of time. Looking back on it, I'm not sure why, since I could get around on my crutches. I suspect with a scope, your daughter's recovery will be quicker & her PT requirements will be less. I was told to avoid contact sports after the surgeries, so all of my PE in school was "modified" PE. I started swimming for exercise and to keep my leg muscles reasonably strong to support my weakened knee joints. At 35, my PVNS hasn't recurred, but I only have about 90 degrees of motion in each knee and they're both arthritic. I suspect my current problems are because they opened me up big-time, rather than with a scope. I still swim laps for exercise (about 5 miles a week) - it really seems to make a difference. Good luck to your daughter. She's going to need lots of support & love. Dave Return to Index
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Date: Thurs, Sep 25, 1997 at 21:35:55 (EDT)
Poster: Heather <##> kcoady@avalon.nf.ca To: Everyone Subject: re:pvs Message: my daughter who is 11 has pvs . what will we expect after she has her surgery. the dr. is going to use the scope . Return to Index
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Date: Thurs, Sep 25, 1997 at 21:26:43 (EDT)
Poster: Heather <##> kcoady @avalon.nf.ca To: Dr. DAvid Caraballo Subject: Re: PVS <##>Re: PVS Message: I want to know others with the same sickness.... my daughter has pvns she is 11. the only information i know about it is through the internet. she will be having her first operation this month. hers is located in her knee. i'm scared because we do not know what we are up against. we live in st. john's newfoundland. Return to Index
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Date: Sun, Sep 21, 1997 at 15:07:01 (EDT)
Poster: Jackie Streich <##> ed_streich@msn To: Everyone Subject: 14 years old with pvns Message: 14 years old with PVNS Return to Index
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Date: Sun, Sep 21, 1997 at 15:05:10 (EDT)
Poster: Jackie Streich <##> ed_streich@msn To: Everyone Subject: pvns Message: 14 years old with PVNS Return to Index
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Date: Wed, Sep 17, 1997 at 08:10:25 (EDT)
Poster: Pauletta Nixon <##> PJNIXON@aol.com To: Brenda Davis Subject: Re: Internal bleeding/PVNS/HELP <##>Re: Internal bleeding/PVNS/HELP Message: Hi! I'm sending this mail out for my mom who's at this point totally bedridden with 'it'. She's had horrific problems for 1 yr & just gotten a PVNS diagnosis (pathology rpt). My question is, in your experience with the disease have you had internally bleeding (ie blood pools like big bruises) under the skin??? When the doc has extracted fluid it's always been bloody or almost all blood. the Doc is doubting the pathology rpt because he thinks PVNS wouldn't cause the internal bleeding. Personally, I don't think these doctors know enough about this disease!! Please reply, we really need some answers!! thanks!! I have had PVNS for 4 years and have had surgery twice and am facing surgery again in the next month. Three years ago prior to my second surgery, they removed blood from my knee once. Most recently, the drew 50 ccs of blood from my knee on last Friday, and another 50 cc of blood this past Monday! According to my doctor this is a side effect of the disease! Return to Index
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Date: Wed, Sep 10, 1997 at 22:21:47 (EDT)
Poster: Stephen Creech <##> Screech121@aol.com To: Gayle Crohan Subject: Re: Day-to-day living<##>Re: Day-to-day living Message: Hi Everyone! My daughter, Trish, is the PVNS person (her knee) in this family, as she has said on the guestbook. However, I have a question for all of you. Her doctor said she could do anything her pain allowed, and she should pump Advil when needed - up to 12 a day every day. She also has a wrap to use when needed. Trish says it feels better when she exercises, even (or especially) when it's swollen. I always feel when it really gets swollen, she should take some strain off it, and perhaps even elevate it a little at a time. It's not that I want her to baby it, but I guess I just can't get away from the normal way to treat a swelling. Trish will exercise, walk for a distance, or even slow jogging. She's not comfortable with such a great amount of Advil. In all the reading I've done on this site, I've never seen anyone mention what his or her doctor recommends for day-to-day 'maintenance' between surgeries. I'd like to hear what y'all have been told, and what you feel does you the most go od (or bMy doctor also told me to do anything that my knee would allow me to do. I do not take Advil or any pain relliever but I have very little pain at the moment. I have had 3 surgeries on my right knee. I find that it can take a lot of use. I dont baby it and it doesnt bother me too often. I am into cycling and I ride 50 or so miles every weekend and it does prteey well. Return to Index
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Date: Wed, Sep 10, 1997 at 22:08:50 (EDT)
Poster: Stephen Creech <##> Screech121@aol.com To: Brenda Davis Subject: Re: Internal bleeding/PVNS/HELP<##>Re: Internal bleeding/PVNS/HELP Message: Hi! I'm sending this mail out for my mom who's at this point totally bedridden with 'it'. She's had horrific problems for 1 yr & just gotten a PVNS diagnosis (pathology rpt). My question is, in your experience with the disease have you had internally bleeding (ie blood pools like big bruises) under the skin??? When the doc has extracted fluid it's always been bloody or almost all blood. the Doc is doubting the pathology rpt because he thinks PVNS wouldn't cause the internal bleeding. Personally, I don't think these doctors know enough about this disease!! Please reply, we really need some answers!! thanks!! PVNS causes internal bleeding all the time. I have had surgery for it three times on my right knee. The swelling can come and go but it always contained blood whenever I had mine drained. I had surgery three months ago on my knee and it is healed pretty well but who knows for how long with this stuff. Last surgery lasted me 9 years so there is som hope. If you have any questions please write me at the email address. i am a 40 year old male and I love in Louisiana. Have a great day. Return to Index
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Date: Wed, Sep 10, 1997 at 22:08:46 (EDT)
Poster: Stephen Creech <##> Screech121@aol.com To: Brenda Davis Subject: Re: Internal bleeding/PVNS/HELP<##>Re: Internal bleeding/PVNS/HELP Message: Hi! I'm sending this mail out for my mom who's at this point totally bedridden with 'it'. She's had horrific problems for 1 yr & just gotten a PVNS diagnosis (pathology rpt). My question is, in your experience with the disease have you had internally bleeding (ie blood pools like big bruises) under the skin??? When the doc has extracted fluid it's always been bloody or almost all blood. the Doc is doubting the pathology rpt because he thinks PVNS wouldn't cause the internal bleeding. Personally, I don't think these doctors know enough about this disease!! Please reply, we really need some answers!! thanks!! PVNS causes internal bleeding all the time. I have had surgery for it three times on my right knee. The swelling can come and go but it always contained blood whenever I had mine drained. I had surgery three months ago on my knee and it is healed pretty well but who knows for how long with this stuff. Last surgery lasted me 9 years so there is som hope. If you have any questions please write me at the email address. i am a 40 year old male and I love in Louisiana. Have a great day. Return to Index
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Date: Mon, Sep 08, 1997 at 01:49:49 (EDT)
Poster: Everaert May <##> patrickb@glo.be To: Stephen Cobb Subject: Re: malignant PVNS <##>Re: malignant PVNS Message: Dear Grace & Peace, It is the first time I hear about a malignant PVNS. I really hope the treatment (chemotherapy) will give significant results to your brother-in-law. I have a question: was the PVNS malignant from the beginning or did it become malignant after some kind of treatment? I wish your brother-in-law and your sister much strength, and I hope he will get well again. May Everaert, Return to Index
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Date: Sat, Sep 06, 1997 at 21:06:39 (EDT)
Poster: Kathy Chadick <##> kwcquilts@aol.com To: Stephen Cobb Subject: Re: malignant PVNS<##>Re: malignant PVNS Message: I had 10 tumors removed from my knee and my fear was they were malignant. My dr assured me they weren't but now I have a new growth. Did your brother-in-law have tumors before the malignant ones? This is the first case I've ween on this page. Return to Index
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Date: Fri, Sep 05, 1997 at 23:17:51 (EDT)
Poster: Stephen Cobb <##> cobbs@mindspring.com To: Bruno Di Lullo Subject: Re: Chemotherapy <##>Re: Chemotherapy Message: Has anyone out there ever been given the option of some kind of chemotherapy to treat this horrible disease? There is so little success in surgery and knee replacements, that I wonder if this course of action might be the answer. Please let me know if anyone has ever considered this?? just read your message after posting one concerning my brother-in-law who is currently on chemo for pvns. unfortunately he is not online however i would be glad to ask him if he would be willing to speak with you about it. please reply if interested. Return to Index
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Date: Fri, Sep 05, 1997 at 23:13:17 (EDT)
Poster: Stephen Cobb <##> cobbs@mindspring.com To: Everyone Subject: malignant PVNS Message: my brother-in-law has suffered for close to 5 years with pvns. he is currently undergoing chemotherapy because the tumors are malignant. the doctors have told him that it is extremely rare for this to happen. if anyone has had a similar experience PLEASE let me know. grace & peace Return to Index
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Date: Wed, Aug 27, 1997 at 10:14:48 (EDT)
Poster: Dr. David Caraballo, Ph.D. <##> phd@mail.ao.net To: David Silver Subject: Re: Re: Re: Internal bleeding/PVNS/HELP <##>Re: Internal bleeding/PVNS/HELP Message: HI.My bleeding is totally internall...At this point The bleeding stop thanks God for it...I'm doing exercises and trying to loose some weigth. Is the person is to heavy it is necesary to loose some weigth... David Return to Index
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Date: Mon, Aug 25, 1997 at 21:53:26 (EDT)
Poster: bndavis@erols.com <##> bndavis@erols.com To: David Silver Subject: Re: Re: Re: Internal bleeding/PVNS/HELP <##>Re: Internal bleeding/PVNS/HELP Message: Update on my mom! She is scheduled for surgery Wed. 8/27. It should be extensive & both the ortho surgeon & knee replacement docs will be present. Maybe they'll find out that the PVNS diagnosis is in error...who knows. Will keep you all posted on what they find out!! Also thanks for all the replies!! Return to Index
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Date: Mon, Aug 25, 1997 at 09:33:35 (EDT)
Poster: Bruno Di Lullo <##> dilullob@execulink To: Everyone Subject: Chemotherapy Message: Has anyone out there ever been given the option of some kind of chemotherapy to treat this horrible disease? There is so little success in surgery and knee replacements, that I wonder if this course of action might be the answer. Please let me know if anyone has ever considered this?? Return to Index
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Date: Sat, Aug 23, 1997 at 01:01:23 (EDT)
Poster: David Silver <##> dsilver@delnet.net To: Everaert May Subject: Re: Re: Internal bleeding/PVNS/HELP <##>Re: Internal bleeding/PVNS/HELP Message: Hi! I'm sending this mail out for my mom who's at this point totally bedridden with 'it'. She's had horrific problems for 1 yr & just gotten a PVNS diagnosis (pathology rpt). My question is, in your experience with the disease have you had internally bleeding (ie blood pools like big bruises) under the skin??? When the doc has extracted fluid it's always been bloody or almost all blood. the Doc is doubting the pathology rpt because he thinks PVNS wouldn't cause the internal bleeding. Personally, I don't think these doctors know enough about this disease!! Please reply, we really need some answers!! thanks!! When may doc extracts fluid it is not bloody, more like a light orange, light pink, but certainly not dark and bloody. He says the light-arange, light pink is the normal colour. My recollection is similiar. As I recall, the fluid withdrawn from my knee was also pinkish in color. I always thought of it as a "bloody fluid" - mostly "clear" fluid with a little bit of blood or something else reddish mixed in, not all or mostly blood. Return to Index
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Date: Fri, Aug 22, 1997 at 21:24:27 (EDT)
Poster: D. Caraballo, Ph.D. <##> phd@mail.ao.net To: Mike Caddell Subject: Re: Re: Re: Internal bleeding/PVNS/HELP <##>Re: Internal bleeding/PVNS/HELP Message: Mine is a straw color with no blood or bruises around the knee, just lots of swelling. -Mike Hi mike its me again: Rewcently I started bleeding internaly..The doctor took 100cc of blood from mi right knee...But thanks God That after examination nothing major inside my knee.Hey Mike Hanging on....be cool.... David Caraballo PD: my e-mail is:phd@mail.ao.net or phd@ao.net Return to Index
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Date: Fri, Aug 22, 1997 at 15:01:15 (EDT)
Poster: Brenda Davis <##> bndavis@erols.com To: Everaert May Subject: Re: Knee replacement ?<##>Re: Knee replacement ? Message: Everaert May, I agree - no knee replacement!! My mother was just diagnosed with PVNS & she had both knees replaced 2 1/2 yrs ago. It has made finding out what is going on VERY complicated since MRI is no longer an option. Having seen what she's going thru now, I myself will never choose knee replacement even though I have rhuematoid arthritis & knee problems. I'm wondering if the knee replacement caused to body to react with PVNS as a rejection mechanism??? The knee rplacemt doc said he's never seen the problems she's having or PVNS in a knee rplacement before... When PVNS surgery is required & you have knee replacements, you'll have to have 2 docs present: 1 ortho and 1 knee rplacemt doctor. Now her ortho doc wants to perform surgery again to remove the rest of the PVNS (they only did orthoscopic before) BUT the knee replacement doc doesn't want to do anymore surgery. Sooo, she's in a real predicament & meantime is home bound & can't do any physical activity (hasn't been able to drive for almost 1 YR!)!! Return to Index
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Date: Fri, Aug 22, 1997 at 14:50:18 (EDT)
Poster: Brenda Davis <##> bndavis@erols.com To: Mike Caddell Subject: Re: Re: Re: Internal bleeding/PVNS/HELP <##>Re: Internal bleeding/PVNS/HELP Message: Mine is a straw color with no blood or bruises around the knee, just lots of swelling. -Mike Thanks for the replies. I talked to the pathologist yesterday & he was very nice. My concern was is the lab rpt correct? They may bring another pathologist in to see if he confirms the diagnosis. She's afraid to do much of anything since the internal bleeding is worse. But she does have lots of swelling (rt knee is 2X the left). Sept 23 we're going to harvard medical school to meet with Dr Brick, so maybe we can get some answers help. Best wishes! Return to Index
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Date: Fri, Aug 22, 1997 at 10:25:46 (EDT)
Poster: Marilyn Smith <##> To: Everaert May Subject: Re: Knee replacement ? <##>Re: Knee replacement ? Message: I hadn't thought of the MRI not being an option after a knee replacement....that's bad news! I thought that a knee replacement was the cure-all answer to this mess....sounds like it doesn't deliver what it promises. Return to Index
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Date: Thurs, Aug 21, 1997 at 17:58:08 (EDT)
Poster: Everaert May <##> patrickb@glo.be To: becky Subject: Re: pvns:help <##>Re: pvns:help Message: i am a 25yr old female who was diagnosed with pnvs in 93 and have had 11 surgeries since then the last being a total knee replacement in mar97. i need help finding a Dr. who can help me with this. even after the TKA it has comeback. I live in constant pain and swelling which i am sure we all do. I am at my wit's end trying to get help. i have a 3yr old son and am a full time student and can't keep up with my life. if anyone can help with names of Dr.'s that can help please let me know. thanks for this wonderfull messafge board. i know i am not alone anymore. ( no one in Az seems to know what this disease is.) I really sympathise with your condition, why don't you try to contact Nancy Schultz (you can find her email address somewhere in this forum). She has had the same problems as you, and was treated well in Boston at Bringham and Women's Hospital Return to Index
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Date: Thurs, Aug 21, 1997 at 17:54:30 (EDT)
Poster: Mike Caddell <##> mike.caddell@amgen.com To: Everaert May Subject: Re: Re: Internal bleeding/PVNS/HELP <##>Re: Internal bleeding/PVNS/HELP Message: Mine is a straw color with no blood or bruises around the knee, just lots of swelling. -Mike Return to Index
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Date: Thurs, Aug 21, 1997 at 17:48:55 (EDT)
Poster: Mike Caddell <##> mike.caddell@amgen.com To: David Caraballo,Ph.D. Subject: Re: Re: Re: PVS<##>Re: PVS Message: Hi David: I ment that this is the first doctor who understands the damage the disease can do and isn't taking it litely. Most doctors I have been to haven't even seen one case of pvs.What we are doing is researching case reports and clinical studies. Then based on my situation we will decide the best treatment options, since this disease seems to vary from person to person. I feel lucky that mine is very slow growing and there is no bone damage, even though I have had it for about 8 years with no surgeries. Thats about it. Good luck! Let me know if there are any other questions I can help you with. -Mike P.S. I tried to send you an e-mail but it keeps getting returned. Return to Index
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Date: Thurs, Aug 21, 1997 at 17:48:23 (EDT)
Poster: Everaert May <##> patrickb@glo.be To: Brenda Davis Subject: Re: Internal bleeding/PVNS/HELP <##>Re: Internal bleeding/PVNS/HELP Message: Hi! I'm sending this mail out for my mom who's at this point totally bedridden with 'it'. She's had horrific problems for 1 yr & just gotten a PVNS diagnosis (pathology rpt). My question is, in your experience with the disease have you had internally bleeding (ie blood pools like big bruises) under the skin??? When the doc has extracted fluid it's always been bloody or almost all blood. the Doc is doubting the pathology rpt because he thinks PVNS wouldn't cause the internal bleeding. Personally, I don't think these doctors know enough about this disease!! Please reply, we really need some answers!! thanks!! When may doc extracts fluid it is not bloody, more like a light orange, light pink, but certainly not dark and bloody. He says the light-arange, light pink is the normal colour. Return to Index
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Date: Thurs, Aug 21, 1997 at 17:44:31 (EDT)
Poster: Everaert May <##> patrickb@glo.be To: Everyone Subject: Knee replacement ? Message: A few weeks ago I met a patient (live) here in Belgium with PVNS, he had a knee replacement twice. He didn't get rid of PVNS at all, he had a decrease of the swelling, but the PVNS is pushing his nerves against the metal knee replacement which causes much pain. He is not able to walk without crutches. My dr over here in Belgium also told me to avoid knee replacement for as long as possible because it doesn't heal the PVNS. Another disadvantage of knee replacement is that it is impossible to make an MRI scan (because of the metal in the knee replacement), while MRI scan is one of the most painless ways to follow-up PVNS Return to Index
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Date: Thurs, Aug 21, 1997 at 14:08:33 (EDT)
Poster: Gary Taylor <##> garytaylor@icon.co.za To: Dr. DAvid Caraballo Subject: Re: PVS <##>Re: PVS Message: I want to know others with the same sickness.... I am 29 yrs old, have had five synovectomies and one attempt at radiation therapy. What would you like to know? Return to Index
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Date: Wed, Aug 20, 1997 at 23:22:06 (EDT)
Poster: Brenda Davis <##> bndavis@erols.com To: Everyone Subject: Internal bleeding/PVNS/HELP Message: Hi! I'm sending this mail out for my mom who's at this point totally bedridden with 'it'. She's had horrific problems for 1 yr & just gotten a PVNS diagnosis (pathology rpt). My question is, in your experience with the disease have you had internally bleeding (ie blood pools like big bruises) under the skin??? When the doc has extracted fluid it's always been bloody or almost all blood. the Doc is doubting the pathology rpt because he thinks PVNS wouldn't cause the internal bleeding. Personally, I don't think these doctors know enough about this disease!! Please reply, we really need some answers!! thanks!! Return to Index
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Date: Wed, Aug 20, 1997 at 23:14:12 (EDT)
Poster: brenda davis <##> bndavis@erols.com To: Nancy Subject: Re: Re: should I?<##>Re: should I? Message: Nancy, Not sure if you're the Nancy that went to see Dr Brick but if you are could you email me? My mom's trying to get him to call her & wants to make an appt. It seems the docs in Richmond va don't know what to do with this. thanks so much! Return to Index
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Date: Wed, Aug 20, 1997 at 22:42:23 (EDT)
Poster: brenda davis <##> bndavis@erols.com To: becky Subject: Re: pvns:help<##>Re: pvns:help Message: i am a 25yr old female who was diagnosed with pnvs in 93 and have had 11 surgeries since then the last being a total knee replacement in mar97. i need help finding a Dr. who can help me with this. even after the TKA it has comeback. I live in constant pain and swelling which i am sure we all do. I am at my wit's end trying to get help. i have a 3yr old son and am a full time student and can't keep up with my life. if anyone can help with names of Dr.'s that can help please let me know. thanks for this wonderfull messafge board. i know i am not alone anymore. ( no one in Az seems to know what this disease is.) Becky, I understand what you're saying about not being able to find doctors who know about this disease! My mom was just diagnosed with it and no on here (VA) seems to want to do something about it. We're checking into going to boston and are wking on getting an appt there. Do you have problems with internal bleeding in addition to swelling & have you had fluid drawn which come out mostly bloody? My best to you in finding a better doctor! Return to Index
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Date: Wed, Aug 20, 1997 at 22:12:46 (EDT)
Poster: David Caraballo,Ph.D. <##> phd@mail.ao.net To: Mike Caddell Subject: Re: Re: PVS<##>Re: PVS Message: I have PVNS in my left knee and possibly two other joints. I've had it in my knee for about 8 years now, and have had no surgeries yet. It was confirmed that I had PVNS when I got an MRI about 6 months ago. I've now seen 4 or 5 doctors, and so far only one has a good idea of what this disease can really do to the affected joint. -Mike MIke: Can you share the good idea from your doctor with. It may help me and others. I suffer from the same deseases too. Thanks mike David Return to Index
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Date: Wed, Aug 20, 1997 at 10:01:06 (EDT)
Poster: Mike Caddell <##> mike.caddell@amgen.com To: Dr. DAvid Caraballo Subject: Re: PVS<##>Re: PVS Message: I have PVNS in my left knee and possibly two other joints. I've had it in my knee for about 8 years now, and have had no surgeries yet. It was confirmed that I had PVNS when I got an MRI about 6 months ago. I've now seen 4 or 5 doctors, and so far only one has a good idea of what this disease can really do to the affected joint. -Mike Return to Index
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Date: Tues, Aug 19, 1997 at 21:35:09 (EDT)
Poster: Dr. DAvid Caraballo <##> ph.D. To: Everyone Subject: PVS Message: I want to know others with the same sickness.... Return to Index
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Date: Tues, Aug 19, 1997 at 21:34:56 (EDT)
Poster: Dr. DAvid Caraballo <##> ph.D. To: Everyone Subject: PVS Message: I want to know others with the same sickness.... Return to Index
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Date: Mon, Aug 18, 1997 at 21:05:04 (EDT)
Poster: becky <##> txlady71@aol.com To: Everyone Subject: pvns:help Message: i am a 25yr old female who was diagnosed with pnvs in 93 and have had 11 surgeries since then the last being a total knee replacement in mar97. i need help finding a Dr. who can help me with this. even after the TKA it has comeback. I live in constant pain and swelling which i am sure we all do. I am at my wit's end trying to get help. i have a 3yr old son and am a full time student and can't keep up with my life. if anyone can help with names of Dr.'s that can help please let me know. thanks for this wonderfull messafge board. i know i am not alone anymore. ( no one in Az seems to know what this disease is.) Return to Index
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Date: Mon, Aug 18, 1997 at 20:37:20 (EDT)
Poster: William Nash <##> wnas1@erols.com To: Brenda Davis Subject: Re: Re: PVNS Questions &intr<##>Re: PVNS Questions &intr Message: I am so happy to have found this web site and forum! Over the past year I have searched the net periodically for info and have always come up with the same sparse info. I am so thrilled to have found others who can share what I am going through. I feel like often people think I am lying about what is going on, even with the swelling, etc. I guess that is normal with chronic conditions. I am a 27 yr old woman with PVNS affecting the left knee. I was diagnosed around '90 though symptoms began about '88 or '89. I have had about 8 surgeries since then, most arthroscopic, 4 were arthroscopic synovectomies, 2 exploratory, 1 complete synovectomy (open) 2 yrs ago. After my last 2 I required closed manipulation due to scar tissue. I also had P-32 radioactive isotope injection. None has proved successful. My doctor is not very interested or sympathetic. He says all we can do is open it up again. The last time was horrible and I had poor results- back in less than 6 months, though no surgery for 2 yrs, so he says 'It lasted 2 yrs so far' (Not exactly...)So I refuse. I am holding out for a knee replacement. Has anyone had it done? Are there any guarantees? Also, how have you found your doctor? I have been referred to mine in the past, but would like to find someone more interested in helping me. How can I do that? Sorry so long! Thanks to all of you! Milica Milicia, My mom had a knee replacemt 2 1/2 yrs ago. Her right knee began swelling very badly one yr ago. She has had to have fluid drawn out several times & has had internal bleeding. the rt knee is now about 2X the size of left knee! The surgeon said he's never seen anything like it in a knee replacemt! then she had orthoscopic surgery to fing out what the problem was. they scooped alot of stuff, but didn't get it all. The swelling is reoccuring so that she's bedridden. She also had RA... The lab rpt came back no cancer BUT PVNS... The doc said it was a rare form of arthritis called 'bleeding arthitis'... Sooo, here I am searching the net for the first time to help get a handle on what this is & what the future might hold. She's 67 & had been very active in spite of the RA. I also have RA & have been in treatment for 8 yrs. Do you know if this hereitary & does it have anything to do with vasculitis? We both have lots of question and are very thankful to find others with this problem. Please email me when you can. I will send her email address in my reply. Thanks so much & God bless you!!! Hey sis. I talked to Mom today and her doctor said he does not believe her problem is PVS. But he does not offer any other treatment that can make her situation any better. After reading many of the comments by PVS patients with their symtoms, I firmly believe Mom has PVS. Now the big question, is there any cure or is there anything to help except for elevating the leg? I read that many take massive doses of either Motrin or Advil for help. But of course, Mother's current doctor says she can't take these pain killers because they thin her blood. I think Mother should get a new doctor and possibly see the doctors in Boston. Talk to you later...Bill. Return to Index
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Date: Thurs, Aug 14, 1997 at 11:48:34 (EDT)
Poster: Dawn Piasta <##> dmpiasta@mb.sympatico.ca To: Milica Rouse Subject: Re: Re: Day-to-day living<##>Re: Day-to-day living Message: Milica, Two days ago I spent a few hours painting a garden set...lots of crouching and bending. When I finished I could hardly walk. So what I did is take a 1000mg Glucosamine Sulfate tablet, and go for a bike ride as far as I could stand it. Today I woke up feeling great and very mobile. Another "trick" I learned from my Physio therapist was to get the blood flowing through the knee by expanding and retracting the muscles around the knee. It takes a bit of practise but it really feel good. For me, the more blood flowing through the area the better. Sitting just makes it worse. This web page is proof positive that even the best doctors are baffled by this disease. Hope you have a good day. Dawn Return to Index
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Date: Thurs, Aug 14, 1997 at 11:27:45 (EDT)
Poster: Milica Rouse <##> rouse@primary.net To: Gayle Crohan Subject: Re: Day-to-day living<##>Re: Day-to-day living Message: My doctor has told me I am suppossed to stay off my feet whenever possible with elevation. Wear flat soled shoes. Normal day to day activities are ok when I am not experiencing pain, but no extended walking or standing, no running or jogging, no kneeling, no tennis, no soccer, or other sports that place stress on the knee joint, no dance (I did ballet and other types of dance before this)no weight bearing exercise. I am allowed to rollerblade,ice skate,bike,and swim. For pain he has me take Advil or Motrin and stay off it. There are times when I do dance, or run after my kids all day at the park or zoo, or wear heels for hours. Sometimes I am fine, but often I am in pain for 2 days to a week after. Return to Index
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Date: Wed, Aug 13, 1997 at 21:41:01 (EDT)
Poster: Brenda Davis <##> bndavis@erols.com To: Trish L. Crohan Subject: Re: When to go back<##>Re: When to go back Message: I've signed in on the guest book and decided to try a message on my own. Looking for opinions guys. When do you know when to pursue another MRI? Further R/X? For instance...last Friday I had my knee propped up on the trash can at work in my own office trying to discretely, behind my closed door, ice down and ADVIL down my knee. I've done this before. The only difference the other day was when I took my knee off the trash can, there were several loud snapping noises that came from my knee (the PVNS location in me!) Within a few minutes a horrible pain stemming from inside my knee sat me back in my chair for the next 15 minutes w/absolutely no relief from anything I tried - moving, not moving, rubbing, icing... All at once, the knee went numb and, of course being numb, did not hurt anymore. I promise I'm not a complainer or baby, but that pain exhausted me for the next couple of hours. Later in the afternoon and until this very moment, my knee has had shooting pains and felt a bit weaker. I d escribe the weakness as not having confidence in my knee; like it may give at any moment but hasn't as of yet. I called the MD Friday and followed up Monday to let them know it was uncomfortable over the weekend. I was advised to give it a couple of days. It sounded more like cartilage. If it continued to be sore, gave on me or locked up, call and we'd set up an MRI. I really like my MD, but I don't like to go to the MD unless I REALLY need to. I figured if I have to more than likely have knee replacement one day, run it till it runs out. On the flip side, if this desease eats at the bone, does it eat at the cartilage too, and if it is damaging it I need to correct it to prevent further damage. Or if I did happen to damage my cartilage, do I need to have it repaired to take any unnecessary strain off my knee joint and in doing so, may prevent the PVNS from progressing any faster. I have accepted I have PVNS. OK. Fine. What my concern is does not stress how much pain or discomfort I am in as much as how and when to battle this bad boy, and when to retreat. Opinions are welcome and suggested. Gotta run for now. (oops - bad humor?!) Good luck guys. We'll beat this. REALLY. WE WILL. Bye for now. TLC Trish, I hate to say this but knee replacement may not help. My mom had both knees replaced & 1 1/2 yrs after replacement she started swelling in her rt knee. For one yr the docs have been baffled. the did orthoscopic surgery & came back with a PVNS diagonis. Now they don't want to do any surgery . She pretty much bed ridden & can't drive or shop without a scooter. Hers may be a worse case than yours though since she's 67... Hope things improve for you though & email if you'd like to chat. We're just trying to find out what this thing is & would like any info you might have. thanks & God bless you!! Return to Index
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Date: Wed, Aug 13, 1997 at 21:27:48 (EDT)
Poster: Brenda Davis <##> bndavis@erols.com To: Milica Rouse Subject: Re: PVNS Questions &intr<##>Re: PVNS Questions &intr Message: I am so happy to have found this web site and forum! Over the past year I have searched the net periodically for info and have always come up with the same sparse info. I am so thrilled to have found others who can share what I am going through. I feel like often people think I am lying about what is going on, even with the swelling, etc. I guess that is normal with chronic conditions. I am a 27 yr old woman with PVNS affecting the left knee. I was diagnosed around '90 though symptoms began about '88 or '89. I have had about 8 surgeries since then, most arthroscopic, 4 were arthroscopic synovectomies, 2 exploratory, 1 complete synovectomy (open) 2 yrs ago. After my last 2 I required closed manipulation due to scar tissue. I also had P-32 radioactive isotope injection. None has proved successful. My doctor is not very interested or sympathetic. He says all we can do is open it up again. The last time was horrible and I had poor results- back in less than 6 months, though no surgery for 2 yrs, so he says 'It lasted 2 yrs so far' (Not exactly...)So I refuse. I am holding out for a knee replacement. Has anyone had it done? Are there any guarantees? Also, how have you found your doctor? I have been referred to mine in the past, but would like to find someone more interested in helping me. How can I do that? Sorry so long! Thanks to all of you! Milica Milicia, My mom had a knee replacemt 2 1/2 yrs ago. Her right knee began swelling very badly one yr ago. She has had to have fluid drawn out several times & has had internal bleeding. the rt knee is now about 2X the size of left knee! The surgeon said he's never seen anything like it in a knee replacemt! then she had orthoscopic surgery to fing out what the problem was. they scooped alot of stuff, but didn't get it all. The swelling is reoccuring so that she's bedridden. She also had RA... The lab rpt came back no cancer BUT PVNS... The doc said it was a rare form of arthritis called 'bleeding arthitis'... Sooo, here I am searching the net for the first time to help get a handle on what this is & what the future might hold. She's 67 & had been very active in spite of the RA. I also have RA & have been in treatment for 8 yrs. Do you know if this hereitary & does it have anything to do with vasculitis? We both have lots of question and are very thankful to find others with this problem. Please email me when you can. I will send her email address in my reply. Thanks so much & God bless you!!! Return to Index
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Date: Fri, Aug 08, 1997 at 15:02:01 (EDT)
Poster: Trish L. Crohan <##> To: John Smead Subject: Re: Re: When to go back <##>Re: When to go back Message: Thanks for your response. Today I had an MRI and will go to the doctor this coming Wednesday, late afternoon, for the results. Hope all is well with you. Return to Index
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Date: Fri, Aug 08, 1997 at 15:01:58 (EDT)
Poster: Trish L. Crohan <##> To: John Smead Subject: Re: Re: When to go back <##>Re: When to go back Message: Thanks for your response. Today I had an MRI and will go to the doctor this coming Wednesday, late afternoon, for the results. Hope all is well with you. Return to Index
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Date: Thurs, Aug 07, 1997 at 18:17:46 (EDT)
Poster: Gayle Crohan <##> sun.shine@nashville.com To: Marilyn Smith Subject: Re: Re: Day-to-day living <##>Re: Day-to-day living Message: Thank you so much for your answer, Marilyn. That sounds just about like Trish. By the way, she likes to ride, too. We have three horses. The only thing you said that I'm not sure she does enough of is the elevation. But her doctor, too, said keep on keeping on till it hurts too much. Again, thanks. Gayle Return to Index
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Date: Thurs, Aug 07, 1997 at 10:15:48 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: Gayle Crohan Subject: Re: Day-to-day living <##>Re: Day-to-day living Message: Hi Gayle, That's the great thing about this website...we can compare notes! I like to ride horses. In fact, I am a member of an equestrian drill team, and that is some really tough, fast riding and sometimes bumping or jostling about. Like you, my Mother was concerned that I was injuring myself further by doing this. My Doc pointed out that you cannot make tumors grow...either they do or they don't. You cannot stop living just because one joint is unhealthy. He told me that I can do anything that I want to until it hurts too much, then quit. I keep a prescription of Motrin 800 on hand at all times and sometimes I live on them and other times they collect dust. I find that activity sometimes helps to make swelling go away...increased blood flow maybe carries away the pooled liquids??? But then somedays the pain is too much and I can hardly walk. This is a strange disease. Since my most recent surgery, 3/26/97, I have ridden a few times, and it hurt too much so I quit. Didn't ride again for another 6 weeks. Last weekend I tried it again. It felt good to be up, like a real person again...not an invalid. The ride actually helped my calf muscle stretch back out like it is supposed to be. The next day my usual limping walk was almost normal! I like to keep my leg propped up as much as possible because it does help the swelling some, also I tend to lose feeling in my foot when I sit in a regular chair for very long. I keep an extra large pillow on my recliner chair to hike it up on...and when it's really puffy, I sleep with my leg propped up on pillows in bed. Right now I'm fighting an infection in my leg and Doc says that keeping it elevated will help. Well, that's what works for me. Keep in touch :) Marilyn Smith Return to Index
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Date: Mon, Aug 04, 1997 at 19:53:37 (EDT)
Poster: Gayle Crohan <##> sun.shine@nashville.com To: Everyone Subject: Day-to-day living Message: Hi Everyone! My daughter, Trish, is the PVNS person (her knee) in this family, as she has said on the guestbook. However, I have a question for all of you. Her doctor said she could do anything her pain allowed, and she should pump Advil when needed - up to 12 a day every day. She also has a wrap to use when needed. Trish says it feels better when she exercises, even (or especially) when it's swollen. I always feel when it really gets swollen, she should take some strain off it, and perhaps even elevate it a little at a time. It's not that I want her to baby it, but I guess I just can't get away from the normal way to treat a swelling. Trish will exercise, walk for a distance, or even slow jogging. She's not comfortable with such a great amount of Advil. In all the reading I've done on this site, I've never seen anyone mention what his or her doctor recommends for day-to-day "maintenance" between surgeries. I'd like to hear what y'all have been told, and what you feel does you the most good (or bri ngs comfort). Gayle Return to Index
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Date: Fri, Aug 01, 1997 at 11:50:15 (EDT)
Poster: Milica Rouse <##> rouse@primary.net To: Marilyn Smith Subject: Re: Re: PVNS Questions &intr Message: I am seeing an Orthopedic Oncologist at one of the best hospitals in our area. I'm not sure if he's the head of the department. He seems to think this isn't a very big deal. Basically treats me like a child sobbing over a paper cut. I know he sees people who are dying every day, but I really need someone who will take me seriously about the difficulties associated with this disease. I guess I need to start calling around. I've seen so many people already. I hate this. Return to Index
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Date: Thurs, Jul 31, 1997 at 01:37:16 (EDT)
Poster: John Smead <##> sgenes@azstarnet.com To: jane Subject: Re: should I? Message: Dear Jane, Before you do anything I recommend that you download, read, and share with your doctors article 8. This article has information on some of the best research done on PVNS. I recently discovered the article and it has pursuaded my orthopedic away from amputation. He is now consulting with the doctors who wrote this article and conducted the research. My advise to you is to get as much information as you can. Don't assume that your doctor knows this disease, most don't have a clue. You mention a Baker's Cyst on the back of your knee. If you read the posting on this list you will see that seems to be a common diagnosis. I was told told for nearly two years that the large lump on the back of my knee was a Baker's cyst, it turned out to be a PVNS nodule. Return to Index
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Date: Thurs, Jul 31, 1997 at 01:15:04 (EDT)
Poster: John Smead <##> sgenes@azstarnet.com To: Trish L. Crohan Subject: Re: When to go back Message: I have had PVNS for nine years and one thing that I have learned is that every day is different. Although I have pain all the time, some days it is almost unbearable. The most important thing is to have constant follow up with your doctor, and an MRI every six months to keep an eye on growth. The purpose of surgery is to lessen the damage that PVNS can and will do. The type of surgery best for you will depend on whether your PVNS is localized or diffused. There is no retreat! Return to Index
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Date: Tues, Jul 29, 1997 at 20:03:38 (EDT)
Poster: Trish L. Crohan <##> sun.shine@nashville.com To: Everyone Subject: When to go back Message: I've signed in on the guest book and decided to try a message on my own. Looking for opinions guys. When do you know when to pursue another MRI? Further R/X? For instance...last Friday I had my knee propped up on the trash can at work in my own office trying to discretely, behind my closed door, ice down and ADVIL down my knee. I've done this before. The only difference the other day was when I took my knee off the trash can, there were several loud snapping noises that came from my knee (the PVNS location in me!) Within a few minutes a horrible pain stemming from inside my knee sat me back in my chair for the next 15 minutes w/absolutely no relief from anything I tried - moving, not moving, rubbing, icing... All at once, the knee went numb and, of course being numb, did not hurt anymore. I promise I'm not a complainer or baby, but that pain exhausted me for the next couple of hours. Later in the afternoon and until this very moment, my knee has had shooting pains and felt a bit weaker. I describe th e weakness as not having confidence in my knee; like it may give at any moment but hasn't as of yet. I called the MD Friday and followed up Monday to let them know it was uncomfortable over the weekend. I was advised to give it a couple of days. It sounded more like cartilage. If it continued to be sore, gave on me or locked up, call and we'd set up an MRI. I really like my MD, but I don't like to go to the MD unless I REALLY need to. I figured if I have to more than likely have knee replacement one day, run it till it runs out. On the flip side, if this desease eats at the bone, does it eat at the cartilage too, and if it is damaging it I need to correct it to prevent further damage. Or if I did happen to damage my cartilage, do I need to have it repaired to take any unnecessary strain off my knee joint and in doing so, may prevent the PVNS from progressing any faster. I have accepted I have PVNS. OK. Fine. What my concern is does not stress how much pain or discomfort I am in as much as how and wh en to battle this bad boy, and when to retreat. Opinions are welcome and suggested. Gotta run for now. (oops - bad humor?!) Good luck guys. We'll beat this. REALLY. WE WILL. Bye for now. TLC Return to Index
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Date: Tues, Jul 22, 1997 at 21:12:32 (EDT)
Poster: Nancy Schultz <##> jsb581@lulu.acns.nwu.edu To: Walt Taschek Subject: Re: Update Message: Hi Walt - I went to Brigham and Women's Hospital about 5 1/2 years ago for a surgery and radiation treatment. I've luckily stayed clean but am alwys in a lot of pain lately. My Dr. in Boston was Dr. Brick. He was excellent and had been studying PVNS for about 13 years. I was sorry to hear that they lost their funding for the PVNS program that I was in. Perhaps Dr. Brick is still there and can help people out. Return to Index
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Date: Tues, Jul 22, 1997 at 21:03:33 (EDT)
Poster: Nancy <##> jsb581@lulu.acns.nwu.edu To: jane Subject: Re: should I? Message: Jane - I just read your posting and I have to agree with your doctor. I've have 5 surgeries on my left knee and the only thing that worked was the last one. It was an open synovectomy front and back and he was able to get every bit of it out. I also had a radiation treatment. It has now been clean for 5 1/2 years. I wish we did this my first surgery and it would have given me the chance to save me from 4 other unsuccessful surgeries. It may have taken longer to recover but at least it worked. Good Luck! Return to Index
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Date: Tues, Jul 15, 1997 at 16:34:35 (EDT)
Poster: dilullob@execulink.com <##> To: jane Subject: Re: should I? Message: I have had all three types of surgery that you are talking about on my left knee over a 7 year period. The one surgery that is most effective in my opinion is open synovectomy. It will take longer to rehabilitate, however I beleive that that surgeon has the best chance of removing most of the bad stuff in this type of operation. The complete synovectomy (the one with 6 port holes-front and back of knee) I beleive is the next most effective. The recovery time is very good with this type of surgery. The partial synovectomy has the fastest recovery time however I do not beleive that this type of surgery can remove all the bad stuff. Return to Index
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Date: Fri, Jul 11, 1997 at 10:28:14 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: Milica Rouse Subject: Re: PVNS Questions &intr Message: Hi! It sounds like you have been through some horrible experiences....isn' this disease the pits!?! At first I was just seeing my regular doctor, then local orthopaedics. I now go to a large teaching hospital and see the head of Orthopaedic Oncology. I found that once you get to that level, these doctors have actually seen the disease before and are more sympathetic with our problems. I think most of the average doctors, while good on normal, run-of-the-mill stuff, are at a loss when it comes to this and so are more inclined to push it aside and say "just live with it". Best wishes to you and your knee! Write soon. Return to Index
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Date: Fri, Jul 11, 1997 at 10:02:55 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: jane Subject: Re: should I? Message: What would I do? Well I've had both kinds...arthroscopic and open. It has been my experience that the arthroscopic is very limited in the degree which the tumors can be removed. The surgeon is only seeing what the camera sees and is limited to the inside of the synovium. In my case, 3 arthroscopies each 6 months apart, enough diseased tissue remained so that the tumors regrew very rapidly. My best results were had by an open surgery both on the front and back sides of my leg, followed by radiation. That allowed me 3 years between surgeries. True, the arthroscopies were easier to recover from, but the results didn't last as long. Some tumors that remained inside of me had a lot of time to eat away at my bones. The choices are hard to make, but I personally would NOT waste my time again with arthroscopic surgery for this particular disease. The results just are not good enough! Good luck and be sure to let us know how thing turn out for you. You can e-mail me directly if you want to. Marilyn Return to Index
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Date: Thurs, Jul 10, 1997 at 20:46:57 (EDT)
Poster: jane <##> jbradley@jci.net To: Everyone Subject: should I? Message: I have been diagnosed with PVNS or synovial chondromatosis, apparently not rhumatic form, and scheduled for surgery next week. After reading Article 4 on the web site, I am wondering if my doctor is going in the right direction. She is a 39-year old specialist in rare diseases and orthopedic oncology and plans to do an open synovectomy, then go around to the back and cut out the very large Baker's cyst. According to Article 4, an arthroscopic synovectomy has less chance of recurrence, less loss of mobility, and is just better all around as well as being more thorough. At present, the disease has started eating into my knee cap. I have swelling, but the pain is usually very tolerable, but hard to walk due to the popping or moving of knee joints. I'm somewhat limited in my activities at present. My whole leg will swell if I am on my feet too long. From your experience, having had numerous surgeries, what would you do if you were just starting out? Return to Index
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Date: Wed, Jul 09, 1997 at 14:35:09 (EDT)
Poster: Milica Rouse <##> rouse@cdmnet.com To: Milica Rouse Subject: Re: PVNS Questions &intr Message: Whoops, I have had 8 surgeries total, 7 since the supposedly easy and routine catilege damage arthro when I was diagnosed. Return to Index
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Date: Wed, Jul 09, 1997 at 01:03:02 (EDT)
Poster: Milica Rouse <##> rouse@primary.net To: Everyone Subject: PVNS Questions &intr Message: I am so happy to have found this web site and forum! Over the past year I have searched the net periodically for info and have always come up with the same sparse info. I am so thrilled to have found others who can share what I am going through. I feel like often people think I am lying about what is going on, even with the swelling, etc. I guess that is normal with chronic conditions. I am a 27 yr old woman with PVNS affecting the left knee. I was diagnosed around '90 though symptoms began about '88 or '89. I have had about 8 surgeries since then, most arthroscopic, 4 were arthroscopic synovectomies, 2 exploratory, 1 complete synovectomy (open) 2 yrs ago. After my last 2 I required closed manipulation due to scar tissue. I also had P-32 radioactive isotope injection. None has proved successful. My doctor is not very interested or sympathetic. He says all we can do is open it up again. The last time was horrible and I had poor results- back in less than 6 months, though no surgery for 2 yrs, so he says "It lasted 2 yrs so far" (Not exactly...)So I refuse. I am holding out for a knee replacement. Has anyone had it done? Are there any guarantees? Also, how have you found your doctor? I have been referred to mine in the past, but would like to find someone more interested in helping me. How can I do that? Sorry so long! Thanks to all of you! Milica Return to Index
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Date: Thurs, Jul 03, 1997 at 10:00:41 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: jane in c/o jb Subject: Re: alternative? Message: Sorry to hear that you have "it". I'm sure that after reading all the notes here you can see that this isn't a pleasant disease to have. There really doesn't seem to be a good remedy. However, I think that if you put surgery off it just makes matters worse because in the time that you are doing nothing, the tumors are digging into your muscles and bones. It sounds like your Doc is heading in the right direction. Good luck,,,,and keep in touch. Return to Index
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Date: Wed, Jul 02, 1997 at 14:43:32 (EDT)
Poster: STEEL! <##> awilliams@ccx.nsb.navy.mil To: Walt Taschek Subject: Re: Update Message: Is there an e-mail address for someone specific at Johns Hopkins. I am interested in purhaps having them correspond with me and/or my doctors, who presently seem to be as lost as i am. Thanks in advance for your help. Return to Index
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Date: Wed, Jul 02, 1997 at 13:17:17 (EDT)
Poster: jane in c/o jb <##> jbradley@jci.net To: Everyone Subject: alternative? Message: I have just recently been diagnosed with PVS or osteochromatosis; is surgery the only treatment? It is in my left knee accompanied by a hugh Baker's cyst behind the knee. Surgeon recommends total synovectomy opening up my knee then cuting out the Baker's cyst from the back. Return to Index
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Date: Fri, Jun 27, 1997 at 06:41:21 (EDT)
Poster: Kathy Chadick <##> KwcQuilts@aol.com To: Walt Taschek Subject: Re: Update Message: Dear All I heard from Johns Hopkins today regarding examination of slides of tissue taken my synovectomy in January. According to their bone pathologist, I may have PVNS but if I do, it is small and does not require treatment. I may, however, have some rheumatoid arthritis in addition to the osteoarthritis previously diagnosed. The current outlook has not changed. I will still need a knee replacement at some future point. They do not believe that the Baker's cysts needs to be removed or that I need another synovectomy. What I like about Johns Hopkins is that I have the attention of a rheumatologist, a knee specialist and a bone pathologist, all who are experts in their field, and who are willing talk to each other about my case. I still think that the medical profession has a lot to learn about PVNS and I hope they find out causes and improved treatments. What Hospital in Boston is using radiation seed in treating PVNS? I a Doctor's name available? I would like to forward to Johns Dear Walt, The hospital that started with my case in Boston was Brigham Women's Hospital. The chief of Orthopedics is Dr. Thornhill. Let me know if you can get any contact with them. I haven't been successful since the PVNS PVNS progect lost its funding. Kathy Chadick Return to Index
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Date: Thurs, Jun 26, 1997 at 18:51:55 (EDT)
Poster: Marilyn Smith <##> BigBoyT1@aol.com To: Walt Taschek Subject: Re: Update Message: Hi Walt, Congratulations on not having PVNS as bad as you thought...however rhumatiiod arthritis doesn't sound like any kind of picnic either! Here's hoping that you find a really good and knowledgeable doctor to treat you. Best wishes! Marilyn Return to Index
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Date: Thurs, Jun 26, 1997 at 10:29:44 (EDT)
Poster: Walt Taschek <##> wtaschek@aol.com To: Everyone Subject: Update Message: Dear All I heard from Johns Hopkins today regarding examination of slides of tissue taken my synovectomy in January. According to their bone pathologist, I may have PVNS but if I do, it is small and does not require treatment. I may, however, have some rheumatoid arthritis in addition to the osteoarthritis previously diagnosed. The current outlook has not changed. I will still need a knee replacement at some future point. They do not believe that the Baker's cysts needs to be removed or that I need another synovectomy. What I like about Johns Hopkins is that I have the attention of a rheumatologist, a knee specialist and a bone pathologist, all who are experts in their field, and who are willing talk to each other about my case. I still think that the medical profession has a lot to learn about PVNS and I hope they find out causes and improved treatments. What Hospital in Boston is using radiation seed in treating PVNS? I a Doctor's name available? I would like to forward to Johns Hopkins. Walt Taschek Return to Index
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Date: Wed, Jun 25, 1997 at 13:10:05 (EDT)
Poster: Mike Caddell <##> To: Kathy Chadick Subject: Re: PVNS Message: Did you contact Nancy Schultz? She had sergery in Boston and reported good results. I'm sure here E-mail address can be found somewhere in this site. Return to Index
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Date: Tues, Jun 24, 1997 at 23:44:20 (EDT)
Poster: Kathy Chadick <##> KwcQuilts@aol.com To: Everyone Subject: PVNS Message: Hi! I discovered this page only a week ago. I'm glad to have a resource in addition to my doctors. My PVNS was discovered a year ago during arthroscopy on my left knee. Ten tumors were found, nestled in my knee. One had broken loose and wedged itself between my bones. I have a copy of the picture of these tumors before they were removed, if you are interested. I was told after my surgery that a hospital in Boston had a research group dealing with this disease. I haven't read that any of you knew of this possibility. I live in Delaware so Boston isn't so far. This group started to work on my case when they lost their funding. A dr in Philadelphia suggested doing a MRI again in 6 months. the scan in May97 showed a "new finding" on the outside of the joint under the ligament. Has PVNS returned? My doctor isn't sure. I am looking for and would appreciate your input. Return to Index
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Date: Tues, Jun 24, 1997 at 16:56:52 (EDT)
Poster: Eddie Carlton <##> eddiecarlton@earthlink.net To: Everyone Subject: 18 year old with PVS Message: Dear Sir(s): I have a dear friend whose son was diagnosed with a diffused case of Pigmented Villonodular Synovitis. He has the type that is not confined to one area of the body. His case attacked his knee. He went in for surgery and literally had handfuls of tumors taken out. Can you direct me to the best places for online for information and/or specialists in this area. Thanks for your help. Eddie in Houston, TX. Return to Index
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Date: Fri, Jun 20, 1997 at 11:44:51 (EDT)
Poster: Christie Bowers <##> christie777@juno.com To: Everyone Subject: Surgery Message: Just wanted everyone to know that my sister, Patricia Hotchkiss, just completed her surgery on 27 May for PVNS of the ankle. It seems to have been a success, due in large part, by her fantastic doctor, Michael Waskin. She still hasn't been able to walk yet, but I think within the next two weeks she'll be up and about. I want to thank everyone for their support through this extremely trying time in our lives. If you know of anyone who has questions regarding PVNS or a specific concern, you may e-mail Dr. Waskin at mwaskin@aol.com Return to Index
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