Subject: Intro,Hope,PDT From: Bruce(NJ) To: All Date Posted: Thurs, May 06, 1999 at 00:35:34 (EDT) Email Address: boliver010@cs.com Message: I just located this site and agree with all that it's informative and lends support to all of us with PVNS. MAY AND FAMILY HAVE DONE A GREAT JOB! My PVNS bio reads as follows:48yr. old male w/ PVNS (diffused type)in L knee; 3 operations; 4in. tumor removed along w/ some muscle and synovium sac. On crutches over 1year; Much Pain;aquatic therapy helpful; glucosumine d/n work; Resectfully Doctors/oncologists are all different in approach which confuses next move; quad appears not to be 'firing'; will have further test;new knee will not help to walk if my quad is not working. Very active to this point--quite an adjustment. Exc. aquatic therapy have had over 100 formal sessions of phys. therapy. Long,long shot-I am investigating a treatment called photodynamic therapy. Although its directed toward esophageal cancer its relative ease in application to destroy cancer cells through a laser activated drug sounds intriguing. I HAVE NOT TALK TO ANY OF MY DOCTORS ON THIS YET. But with what we're facing we need to investigate and promote any viable alternatives. I'll keep in touch. Feel free to write. Albeit difficult, try to be positive. THANKS AGAIN, MAY!!!!!!!!!

Subject: Newly Diagnosed From: Valerie To: All Date Posted: Sat, May 01, 1999 at 12:27:17 (EDT) Email Address: damdulaq@aol.com Message: Hi everybody. I have just been diagnosed with PVNS of my right knee after a two year period of swelling and bloody effusions. (Forgive my spelling of all these new words.) My orthopaedic surgeon diagnosed it from arthroscopic synovectomy in Feb where he removed as much as he could (95%). Thanks to this incredibly informative website, I was able to coach my orth surgeon into referring me to an orthopaedic oncologist right away. His first instinct was to refer me to a rhuematologist. I live in Chicago and thankfully we have a couple of orth oncologists in the area. I saw Dr. Steven Gitalis of Rush Presbyterian St. Luke's last week. He has other PVNS patients as well. Dr. Gitalis confirmed the diagnosis and set me up for regular MRIs to watch for growth of the disease. He informed me that the yttrium treatments were not approved by the FDA so that is no longer an option (he had previously referred a couple of his PVNS patients to Boston for this treatment). He further espoused his philosophy of NOT treating a benign disease with radiation of which so little is known. They tell me I am extremely fortunate in that they diagnosed this disease so early; I have no bone damage nor arthritis. And for the first time in two years, my knee is not swollen nor numb and stiff. His treatment plan for me is to monitor my knee with MRIs, remove any growths with surgery and possibly knee replacement if the knee is damaged drastically from the disease, but that would be much further down the road. I just wanted to post my experience and thank everyone for their diligence in communications of this rare disease. This website and all your comments enabled me to educate my doctor to get me to the best care available! Anybody else have trouble reading the first message in a stream on this message board? I have not been able to read the first message unless it is included in a response. Thanks again and I can be emailed at damdulaq@aol.com.

Subject: Swelling From: John Brady To: Everyone Date Posted: Fri, Apr 16, 1999 at 15:31:04 (EDT) Email Address: NA Message:

Subject: Re: Swelling From: Dan Krings To: John Brady Date Posted: Fri, Apr 16, 1999 at 17:42:38 (EDT) Email Address: NA Message: I have had five surgeries on my left knee. From my experience the pain never completely goes away. In my case there is always some dull pain, and some lumpy swelling. After my last surgery, it took about four weeks to get back to "normal". If your daughter is having a lot of pain after a month-and-a-half I think you should talk to her doctor.

Subject: Hyalgan From: Dan To: Everyone Date Posted: Sat, Apr 10, 1999 at 15:13:52 (EDT) Email Address: NA Message:

Subject: Re: Hyalgan From: Phil To: Dan Date Posted: Sun, Apr 11, 1999 at 01:36:23 (EDT) Email Address: NA Message: My knee problems have finally generated 'arthritis-like' problems mainly in the mornings and evenings, and after strenuous exercise. My doctor has mentioned Hyalgan injections, but he wants to investigate further before trying it. I thought I might do the same. Has anyone here had the Hyalgan injections following long term PVNS? Any input would be appreciated. I have primary osteoarthritis in my left knee in addition to PVNS. Last summer I had the five Hyalgan injections but I didn't experience much improvement in my symptoms. I think Hyalgan works for only about 50% of the patients. It might be worth trying. Perhaps you'll be one of the lucky 50%.

Subject: pvns in hip From: Marsha To: Everyone Date Posted: Thurs, Apr 08, 1999 at 15:44:52 (EDT) Email Address: NA Message:

Subject: Support From: Karen To: Everyone Date Posted: Sun, Mar 28, 1999 at 22:55:27 (EST) Email Address: NA Message:

Subject: Re: Support From: Bill To: Karen Date Posted: Mon, Mar 29, 1999 at 13:47:36 (EST) Email Address: NA Message: Hi, I feel at a loss.My husband of 34 was diagnosed with pvns in November of last year. He has a back injury that he has been dealing with for eight years now. He is a heavy equipment operator and trainer at an iron ore mine. He work's twelve hour shift's and by the time he come's home he can hardly get up the stairs. I feel so helpless, I don't know what to do for him. He is so frustrated, I worry that he might give up. He asked me just the other day ' What did I do to someone to deserve this curse?' If anyone out there has any ideas for me to be able to help this poor man cope, please let me know, Thank's. Karen Karen, don't walk, run to an Orthopedic Surgeon and ask him to recommend an Oncologist. Work with both of them. PVNS can only get worse with neglect. They may also be of value with his back problem. As a mine worker he should know there can always be light at the end of the tunnel. Drop me a note on my e-mail if I can be of further help.

Subject: Re: Re: Support From: Allen To: Bill Date Posted: Thurs, Apr 01, 1999 at 16:24:34 (EST) Email Address: NA Message: Hi, I feel at a loss.My husband of 34 was diagnosed with pvns in November of last year. He has a back injury that he has been dealing with for eight years now. He is a heavy equipment operator and trainer at an iron ore mine. He work's twelve hour shift's and by the time he come's home he can hardly get up the stairs. I feel so helpless, I don't know what to do for him. He is so frustrated, I worry that he might give up. He asked me just the other day ' What did I do to someone to deserve this curse?' If anyone out there has any ideas for me to be able to help this poor man cope, please let me know, Thank's. Karen Karen, don't walk, run to an Orthopedic Surgeon and ask him to recommend an Oncologist. Work with both of them. PVNS can only get worse with neglect. They may also be of value with his back problem. As a mine worker he should know there can always be light at the end of the tunnel. Drop me a note on my e-mail if I can be of further help. Ditto what Bill says --- -- we have been there, and the only answers will come from an orthopedic ONCOLOGIST. They may be hard to find, but the orthopedic surgeons know them and can get you connected.

Subject: Re: Re: Re: Support From: Karen To: Allen Date Posted: Sun, Apr 04, 1999 at 01:46:41 (EST) Email Address: NA Message: Thank you for your advice. We will try to get our surgeon to recomend an oncoligist. My husband would like to know if every day it feel's like you fell on a rock with your knee cap or if he's imagining this stuff.He say's it hurt's like nothing he's ever felt before. Is there anything that you can recomend for the pain that will help? He's tried advil, glucosimine sulfite, msm, creatine, proteine, and various other supplement's and nothing seem's to help to alleviate the pain . Thank you. Karen and Kurt

Subject: Re: Re: Re: Re: Support From: Allen To: Karen Date Posted: Sat, Apr 10, 1999 at 21:30:34 (EDT) Email Address: NA Message: Thank you for your advice. We will try to get our surgeon to recomend an oncoligist. My husband would like to know if every day it feel's like you fell on a rock with your knee cap or if he's imagining this stuff.He say's it hurt's like nothing he's ever felt before. Is there anything that you can recomend for the pain that will help? He's tried advil, glucosimine sulfite, msm, creatine, proteine, and various other supplement's and nothing seem's to help to alleviate the pain . Thank you. Karen and Kurt Only helpful products for me have been anti-inflamatories such as Advil (ibuprophen) and the new one named Celbrex. The very best pain relief for me has been Tylox, which is a combination of Tylenol and a narcotic.

Subject: PVNS From: Nayda To: Everyone Date Posted: Sun, Mar 28, 1999 at 15:59:04 (EST) Email Address: NA Message:

Subject: Re: PVNS From: Allen To: Nayda Date Posted: Thurs, Apr 01, 1999 at 16:32:38 (EST) Email Address: NA Message: Please pay attention to this advice. I live in Maryland and have recently been thru what you are going thru. I know of Dr. Malawar, and I have only good things to say about him. I chose to use Dr. Frank Frassica at the Johns Hopkins Hospital in Baltimore because of his reputation and the fact that Hopkins is closer to my home. You will be spending a lot of time at the hospital (3-5 days for the surgery) plus all the follow up appointments and MRI etc. etc. If it would be helpful I will give you my phone number and we can talk. The whole gamut of diagnosis, learning, proceeding with surgery, follow ups, the possibility of radiation therapy, and the whole recovery process is an ordeal. "It ain't fun, but it is doable" My e mail address is AllenC7693@aol.com

Subject: Re: Re: PVNS From: Nayda To: Allen Date Posted: Fri, Apr 02, 1999 at 15:54:52 (EST) Email Address: NA Message: Please pay attention to this advice. I live in Maryland and have recently been thru what you are going thru. I know of Dr. Malawar, and I have only good things to say about him. I chose to use Dr. Frank Frassica at the Johns Hopkins Hospital in Baltimore because of his reputation and the fact that Hopkins is closer to my home. You will be spending a lot of time at the hospital (3-5 days for the surgery) plus all the follow up appointments and MRI etc. etc. If it would be helpful I will give you my phone number and we can talk. The whole gamut of diagnosis, learning, proceeding with surgery, follow ups, the possibility of radiation therapy, and the whole recovery process is an ordeal. 'It ain't fun, but it is doable' My e mail address is AllenC7693@aol.com Thanks for the referral. I have only been diagnosed with "Synovitis". After some tests, my doctor says it is not R-Arthritis or psuedo-gout. He really doesn't know what it could be. The more I read the messege board the more uncomfortable I feel. I hope I'm not overreacting about this. Please e-mail me your phone number and I'll call you. It's a very kind offer. Thanks. Nayda

Subject: PVNS From: Nayda To: Everyone Date Posted: Sun, Mar 28, 1999 at 15:57:26 (EST) Email Address: NA Message:

Subject: Diminishing returns From: Dan To: Everyone Date Posted: Fri, Mar 19, 1999 at 13:34:14 (EST) Email Address: NA Message:

Subject: ARHTROSOCPIC SYNOVECTOMY From: RAMI To: Everyone Date Posted: Sat, Mar 13, 1999 at 10:27:13 (EST) Email Address: NA Message:

Subject: Re: ARHTROSOCPIC SYNOVECTOMY From: gllang@ipa.net To: RAMI Date Posted: Wed, Mar 17, 1999 at 08:45:41 (EST) Email Address: NA Message: ANYBODY CONSIDERING AN OPEN SYNOCTOMY OF THE KNEE STOP!! THERE IS HOPE, DR.CHARLES BUSCH-JOSEPH PERFORMED AN ARTHROSCOPIC SYNOVECTOMY OF BOTH THE FRONT AND BACK OF MY KNEE!!! I RECOVERED SO FAST, THAT IT WAS PAST MY WILDEST IMAGINATION. PLEASE FEEL FREE TO CONTACT HIM AT (312)243-4244 AND WE ALL KNOW THE PAIN AND RECOVERY TIME OF AN OPEN SYNOVECTOMY!!! I MIGHT SOUND LIKE A MARKETING FIRM FOR DR. BUSCH-JOSEPH, THAT JUST SHOWS YOU HOW HAPPY I AM WITH HIS WORK IF ANYBODY HAS ANY QUESTIONS PLEASE E-MAIL ME have had two arthroscopic last one 7-31-98 can't find a dr that knows anything about my condition

Subject: Re: ARHTROSOCPIC SYNOVECTOMY From: Karen To: RAMI Date Posted: Sun, Mar 28, 1999 at 22:28:10 (EST) Email Address: NA Message: Rami, Hi, I am the wife of a pvns sufferer. My husband had arthroscopic surgery on his knee in November 5th of last year and he was doing good untill he slipped on the ice at work and now he has swelling again. His surgeon say's his knee look's good, but my husband say's the pain is worse than it was prior to surgery. I am wondering what to do, because from what we've read, the longer you let this stuff eat at the tissue, the more damage can be done. My husband is afraid to go back because his surgeon say's the next step is an oopen synovectomy. Can his surgeon perform another arthroscopic surgery with the same result's? Thank's, Also any tips on how to be a good support system for him? I feel helpless. Karen

Subject: arthoscopic synovetemy From: Rami To: Everyone Date Posted: Email Address: NA Message:

Subject: pvns of left hip From: paula To: Everyone Date Posted: Tues, Feb 09, 1999 at 21:30:56 (EST) Email Address: NA Message:

Subject: can anyone help? From: Nenita To: Everyone Date Posted: Thurs, Feb 04, 1999 at 05:10:17 (EST) Email Address: NA Message: Hi. Here is a breif history. I've had pvns for ten years in my R knee. 5 ops and yittrium treatment later, the pvns is still here, along with a new cyst in one of the joint bones. My surgeon and I wish to avoid another operation at this time, so I am relying on anti-inflams to get me through. Something that I do not want to be on long term. Therefore I would really appreciate any information oon suppplements to promote healthy growth in the knee, or creams lotions or potions that any of you have found helpfull for pain relief. Thanks...

Subject: Re: can anyone help? From: Bill To: Nenita Date Posted: Fri, Feb 05, 1999 at 09:59:24 (EST) Email Address: NA Message: Nenita, we use Arthritis Athletic Rub which is a natural botanical formula enhanced with capsicum and emu oil. It is available through Golden View Emu Company, Oswego, Kansas. Their phone is 316-795-2978. Knocks pain down in about 10 minutes or so and keeps it down for some time. It is also available at a local pharmacy but probably not near you.

Subject: Re: can anyone help? From: Ellen To: Nenita Date Posted: Wed, Mar 17, 1999 at 10:45:50 (EST) Email Address: NA Message: Hi. Here is a breif history. I've had pvns for ten years in my R knee. 5 ops and yittrium treatment later, the pvns is still here, along with a new cyst in one of the joint bones. My surgeon and I wish to avoid another operation at this time, so I am relying on anti-inflams to get me through. Something that I do not want to be on long term. Therefore I would really appreciate any information oon suppplements to promote healthy growth in the knee, or creams lotions or potions that any of you have found helpfull for pain relief. Thanks... Nenita, I've been having considerable success with acupuncture. I was quite skeptical going into it, but my swelling is non-existent and I'm not getting the pain I used to with excercise and weather changes. A discussion was started about acupuncture right around the time this listserv crashed a few months ago, anyone else having success with it?

Subject: Re: can anyone help? From: nenita To: Ellen Date Posted: Wed, Apr 28, 1999 at 08:22:31 (EDT) Email Address: nenitaann@hotmail.com Message: Thanks, that may be worth a try. What areas do they insert the needles?

Subject: HELP From: Rebecca To: Everyone Date Posted: Mon, Feb 01, 1999 at 22:42:23 (EST) Email Address: NA Message: My second question is this. Unfortunately the patient in question is my brother and this will be his fifth operation in 4 years. I was very interested to read of patients recieving radiation therapy as we have repeatedly been told that surgery is the only option that is available. After a forum on his case it was concluded that there was no precedent for radiation on the knee for this condition except for in non-western countries of dubious medical standing. They also spoke of the risk of causing the tumours to become malignant. Is there justification for their arguments? It seems most likely to me that no one here wants to chance treatment that they are not confident will succeed.

Subject: Re: HELP From: Laura To: Rebecca Date Posted: Tues, May 04, 1999 at 11:58:56 (EDT) Email Address: laura_rafuse@scotia-mcleod.com Message: My second question is this. Unfortunately the patient in question is my brother and this will be his fifth operation in 4 years. I was very interested to read of patients recieving radiation therapy as we have repeatedly been told that surgery is the only option that is available. After a forum on his case it was concluded that there was no precedent for radiation on the knee for this condition except for in non-western countries of dubious medical standing. They also spoke of the risk of causing the tumours to become malignant. Is there justification for their arguments? It seems most likely to me that no one here wants to chance treatment that they are not confident will succeed. --- I am having the same problem with this. I have had 6 surgery's in 4 years and am ready for another one. Any information you could give me I would appreciate. Thank you

Subject: Re: HELP From: Marilyn To: Rebecca Date Posted: Thurs, Feb 04, 1999 at 11:37:10 (EST) Email Address: NA Message: I have sent an e-mail to you that has my story in it. Hope it helps you some. There doesn't seem to be much research on this disease, but you can find a lot of useful information at this website. Look around and read everything!

Subject: Re: HELP From: Bill To: Rebecca Date Posted: Fri, Feb 05, 1999 at 09:53:23 (EST) Email Address: NA Message: Rebecca, I copied your note and gave it to our Orthopedic Surgeon who will discuss it with our Orthopedic Oncologist. When I receive their comments I will get back to you. Possible they may contact you direct. Check my note in 'view checklist'. Radiation is viable after the healing process of the operation to remove PVNS. Dosage is low. Radiation done prior to healing damages the bone cells and retards healing. Our Oncologist developed a radiation process that is effective. Lots of luck to you.

Subject: Re: Re: HELP From: Demetre To: Bill Date Posted: Sun, Feb 07, 1999 at 16:28:30 (EST) Email Address: NA Message: Rebecca, I copied your note and gave it to our Orthopedic Surgeon who will discuss it with our Orthopedic Oncologist. When I receive their comments I will get back to you. Possible they may contact you direct. Check my note in 'view checklist'. Radiation is viable after the healing process of the operation to remove PVNS. Dosage is low. Radiation done prior to healing damages the bone cells and retards healing. Our Oncologist developed a radiation process that is effective. Lots of luck to you. I have read all the postings on this web page on PVNS and I am impressed at the persistance and determination of/in all. I have tried to find out all I can on the subject but has proven to be a frustrating ordeal. The best info by far is that of the patients own experiences. I still am not clear if synovitis and PVNS are one and the same. Can any one shead some light? I also am wondering if any research is being carried out using PDT (photodynamic therapy) ? Can the Cyber Knife be used in such cases?; if not,why not? Some one please shead some light!

Subject: Re: Re: Re: HELP From: Bill To: Demetre Date Posted: Tues, Feb 23, 1999 at 11:16:17 (EST) Email Address: NA Message: Demetre, PVNS is Pigmented Volunadular Synovitis which many simply refer to as PVNS or Synovitis. I am not familiar with PDT or the Cyber Knife but will ask our surgeon when I see him on the 12th. I did ask him about using Laser and he said it is not possible.

Subject: Re: Re: Re: Re: HELP From: Demetre To: Bill Date Posted: Sat, Feb 27, 1999 at 16:49:50 (EST) Email Address: NA Message: Thanks for taking the time to ask your surgeon, Bill. I have no surgeon yet, my case is still in the diagnostic and perhaps early stages. My turn for MRI is about two months if I'm lucky! I eagerly await your surgeons input as far as PDT and the cyber Knife are concerned, take care and GOD Bless.

Subject: Re: HELP From: stacey To: Rebecca Date Posted: Sat, Feb 13, 1999 at 22:28:41 (EST) Email Address: NA Message: Hello, I am an honours student in an arthritis research lab in Adelaide, Australia and I have a few questions. In our lab, work has been done transplanting human arthritic synovium into mice where it can be further studied. We are contemplating a similar expt with diseased PVNS synovium but I have been unable to find any background information at all. Does anyone know if anything like this has been done anywhere? The patients surgery is in a couple of months so I would love to hear from anyone who knows anything. My second question is this. Unfortunately the patient in question is my brother and this will be his fifth operation in 4 years. I was very interested to read of patients recieving radiation therapy as we have repeatedly been told that surgery is the only option that is available. After a forum on his case it was concluded that there was no precedent for radiation on the knee for this condition except for in non-western countries of dubious medical standing. They also spoke of the risk of causing the tumours to become malignant. Is there justification for their arguments? It seems most likely to me that no one here wants to chance treatment that they are not confident will succeed. My mom possibly has pvs of the metatarsals. What are some of the symptoms of this disease. Do you know of friburgs (misspelled) disease?

Subject: Re: HELP From: Terri To: Rebecca Date Posted: Wed, Mar 24, 1999 at 23:38:30 (EST) Email Address: NA Message: Hello, I am an honours student in an arthritis research lab in Adelaide, Australia and I have a few questions. In our lab, work has been done transplanting human arthritic synovium into mice where it can be further studied. We are contemplating a similar expt with diseased PVNS synovium but I have been unable to find any background information at all. Does anyone know if anything like this has been done anywhere? The patients surgery is in a couple of months so I would love to hear from anyone who knows anything. My second question is this. Unfortunately the patient in question is my brother and this will be his fifth operation in 4 years. I was very interested to read of patients recieving radiation therapy as we have repeatedly been told that surgery is the only option that is available. After a forum on his case it was concluded that there was no precedent for radiation on the knee for this condition except for in non-western countries of dubious medical standing. They also spoke of the risk of causing the tumours to become malignant. Is there justification for their arguments? It seems most likely to me that no one here wants to chance treatment that they are not confident will succeed. My friend had the radiation treatment and it damaged his veins so bad that that have tried to replace them 3 times now if this last one don't work they are talking about amputaion above the knee. Seek more info first PLEASE

Subject: Knee Replacement From: Alynn To: Everyone Date Posted: Tues, Jan 05, 1999 at 03:35:05 (EST) Email Address: NA Message: else considered replacement? Would that finally rid me of PVS once and for all? I'm at the point where I'm practically crawling up stairs and am just about ready to say "lets go for it" even though I'll likely wear out the replacement in 10 to 20 years and then what??? I'm just so worn out from the pain. I've tried Glucosamine but had a 10 day headache so stopped taking it, I'm allergic to sulphur based meds maybe that had something to do with it ?? Anybody out there who can give me any advice? comments? I'd appreciate hearing from you. Alynn

Subject: Re: Knee Replacement From: Pauletta Nixon To: Alynn Date Posted: Tues, Jan 12, 1999 at 09:38:08 (EST) Email Address: NA Message: I have had PVS for 16 years.4 surgeries,the last one approx a year ago, mainly to clean it out and to fix whatever was making it lock up in the middle of the night. I have the 'knee of an 89 year old with osteoarthritis'.While he was in there he removed another tumor and cleaned up what he could. According to him knee replacement is enevitable but wants to put it off as long as possible. I am 36 years old with 2 speedy preschoolers at home. I have recently tried orthovisc injections in the joint to help with the pain. On Jan 6 I go again for another 3 (once a week) I don't know what to do next...Has anyone else considered replacement? Would that finally rid me of PVS once and for all? I'm at the point where I'm practically crawling up stairs and am just about ready to say 'lets go for it' even though I'll likely wear out the replacement in 10 to 20 years and then what??? I'm just so worn out from the pain. I've tried Glucosamine but had a 10 day headache so stopped taking it, I'm allergic to sulphur based meds maybe that had something to do with it ?? Anybody out there who can give me any advice? comments? I'd appreciate hearing from you. Alynn From what my doctor has told me and what I have read, a knee replacement does NOT stop this disease! You will still continue to have problems. My Doctor says, however, that a knee repacement is inevitable. Good Luck!

Subject: Re: Knee Replacement From: JIM L To: Alynn Date Posted: Sat, Feb 13, 1999 at 18:17:10 (EST) Email Address: NA Message: I have had PVS for 16 years.4 surgeries,the last one approx a year ago, mainly to clean it out and to fix whatever was making it lock up in the middle of the night. I have the 'knee of an 89 year old with osteoarthritis'.While he was in there he removed another tumor and cleaned up what he could. According to him knee replacement is enevitable but wants to put it off as long as possible. I am 36 years old with 2 speedy preschoolers at home. I have recently tried orthovisc injections in the joint to help with the pain. On Jan 6 I go again for another 3 (once a week) I don't know what to do next...Has anyone else considered replacement? Would that finally rid me of PVS once and for all? I'm at the point where I'm practically crawling up stairs and am just about ready to say 'lets go for it' even though I'll likely wear out the replacement in 10 to 20 years and then what??? I'm just so worn out from the pain. I've tried Glucosamine but had a 10 day headache so stopped taking it, I'm allergic to sulphur based meds maybe that had something to do with it ?? Anybody out there who can give me any advice? comments? I'd appreciate hearing from you. Alynn SEE ABOVE

Subject: Re: Knee Replacement From: JIM L To: Alynn Date Posted: Sat, Feb 13, 1999 at 18:41:16 (EST) Email Address: NA Message: I have had PVS for 16 years.4 surgeries,the last one approx a year ago, mainly to clean it out and to fix whatever was making it lock up in the middle of the night. I have the 'knee of an 89 year old with osteoarthritis'.While he was in there he removed another tumor and cleaned up what he could. According to him knee replacement is enevitable but wants to put it off as long as possible. I am 36 years old with 2 speedy preschoolers at home. I have recently tried orthovisc injections in the joint to help with the pain. On Jan 6 I go again for another 3 (once a week) I don't know what to do next...Has anyone else considered replacement? Would that finally rid me of PVS once and for all? I'm at the point where I'm practically crawling up stairs and am just about ready to say 'lets go for it' even though I'll likely wear out the replacement in 10 to 20 years and then what??? I'm just so worn out from the pain. I've tried Glucosamine but had a 10 day headache so stopped taking it, I'm allergic to sulphur based meds maybe that had something to do with it ?? Anybody out there who can give me any advice? comments? I'd appreciate hearing from you. Alynn I'M ALSO 36 YRS OLD, I HAD A TOTAL KNEE DONE IN 1994... AT THE MOMENT I'M RECOVERING FROM A TOTAL KNEE REVISION. I ALSO WAS TOLD THAT THE REPLACEMENT WAS MY ONLY HOPE.. THE LAST 4 YRS I FELT GREAT, ABLE TO WAL AND PLAY GOLF WITH ALMOST NO PAIN.. I NEEDED THE REVISION BECAUSE THE CEMENT, FOR SOME REASON DIDN'T ADHEAR TO MY "YOUNG" BONES... MY DR. IS GREGORY BRICK OF BRIGHAM & WOMENS HOSP. IN BOSTON MASS, THEY ARE DOING A FEDERALLY FUNNDED STUDY ON PVNS.. I'D HAVE YOUR DR. CONTACT HIM... HE TAKES PATIENTS FROM AL OVER I'M FROM UPSTATE NY, AND LEARNED OF HIM THROUGH MY LOCAL DR. GOOD LUCK. P.S. MY 1ST CHILD IS DUE IN ABOUT 3 WEEKS...

Subject: Radiation therapy From: Allen Coven To: Everyone Date Posted: Thurs, Dec 17, 1998 at 22:00:03 (EST) Email Address: NA Message:

Subject: Re: Radiation therapy From: Marilyn To: Allen Coven Date Posted: Wed, Dec 30, 1998 at 00:45:07 (EST) Email Address: NA Message: Hi Allen, I had radiation therapy after my 4th surgery...every day for a month. It didn't make me sick, I didn't get burned. My leg got a terrific suntan in that area and I lost all of the hair on that part of my leg. My lower leg made up for the lost knee area hair by growing a forest of gorilla hair. Those effects lasted for about 3 years....that's a long tan! Now the color of my leg is average again, Hair growth is a bit less than normal. One thing that did happen to me, and I'm not sure if it was an effect of the radiation or an effect of the major amount of surgery that I had, but after just a few radiation treatments, I developed blood clots in my leg and was hospitalized for another week and had to stay on blood thinners for about 10 months. Tough decision to make, but radiation did put the disease into remission for a couple of years and that was a blessed relief!

Subject: Re: Radiation therapy From: Bill To: Allen Coven Date Posted: Tues, Jan 05, 1999 at 18:10:03 (EST) Email Address: NA Message: Allen, Just completed fusion of my wifes right ankle to eliminate PVNS which has to have a joint to live in. No joint, no PVNS. However, the Orthopedic Surgeon and the Orthopedic Oncologis both said that even with the best results from such surgery, you can not expect that the synovitis will not return. The only way to insure it is with radiation. Synovium is highly susceptible to radiation therefore it does not require large doses like a cancer would. Our surgeon said he is exposed to more radiation in one day in surgery than the PVNS would be exposed to in order to kill it. They are going to watch the ankle closely through the healing process and hope that signs of PVNS do not show up for a minimum of 3 months and preferably 6 months. After that, they can do the radiation without danger of harming the bone cells that are needed in the healing process. Once the radiation is done, no more need to be concerned about PVNS. Wish we had known more about PVNS before we found it had destroyed the ankle. Lots of luck to you.

Subject: Re: Re: Radiation therapy From: Lori To: BILL Date Posted: Fri, Jan 08, 1999 at 21:09:04 (EST) Email Address: NA Message: Allen, Just completed fusion of my wifes right ankle to eliminate PVNS which has to have a joint to live in. No joint, no PVNS. However, the Orthopedic Surgeon and the Orthopedic Oncologis both said that even with the best results from such surgery, you can not expect that the synovitis will not return. The only way to insure it is with radiation. Synovium is highly susceptible to radiation therefore it does not require large doses like a cancer would. Our surgeon said he is exposed to more radiation in one day in surgery than the PVNS would be exposed to in order to kill it. They are going to watch the ankle closely through the healing process and hope that signs of PVNS do not show up for a minimum of 3 months and preferably 6 months. After that, they can do the radiation without danger of harming the bone cells that are needed in the healing process. Once the radiation is done, no more need to be concerned about PVNS. Wish we had known more about PVNS before we found it had destroyed the ankle. Lots of luck to you. Hi Bill, I just read your message , and thought I would add my two cents worth. If that Doctor is serious that he is exposed to more regularly, then the "standard" doses I recieved must have been way off. My skin in that area is now discoloured,hard and tighter, the skin has very little moisture and even cracked. I got an infection there and was hospitalized for more than a week. The doctor that Preformed the treatment is one of the few who have done research and issued a paper on PVNS. Bottom line is that I really had no other choices left, but radiation, however I wish the doctors had prepared me for the possible side effect that happened and not just for the best case out come. Sincerely yours, Lori

Subject: Re: Re: Re: Radiation therapy From: Bill To: Lori Date Posted: Sat, Jan 30, 1999 at 18:37:00 (EST) Email Address: NA Message: Lori, the dosage of radiation required to kill the synovitis is not very large and that is per Doctor Rosenthal here in the Kansas City area. He is one of about 100 in the country with the title of Orthopedic Oncologist. He helped develop radiation processes for this disease. I am so sorry you have what sounds like radiation burn. Did you speak to an Oncologist? I don't know if you could discuss this with Dr. Rosenthal but he can be reached at 816-561-3003 if you want to try. Lots of luck and best wishes.

Subject: Re: Re: Re: Re: Radiation therapy From: Rosemary To: Bill Date Posted: Fri, Feb 12, 1999 at 15:33:33 (EST) Email Address: NA Message: Lori, the dosage of radiation required to kill the synovitis is not very large and that is per Doctor Rosenthal here in the Kansas City area. He is one of about 100 in the country with the title of Orthopedic Oncologist. He helped develop radiation processes for this disease. I am so sorry you have what sounds like radiation burn. Did you speak to an Oncologist? I don't know if you could discuss this with Dr. Rosenthal but he can be reached at 816-561-3003 if you want to try. Lots of luck and best wishes. Bill, I too saw Dr. Rosenthal. He suggested radiation after my next (4th) surgery (yet to be scheduled). The type of radiation one receives is what needs to be considered. Dr. Rosenthal prescribed Yttrium injection. It is by far less distructive to the joint and surrounding tissue than conventional radiation. The only problem is that it is not available in the Kansas City area. I'll have to travel for treatment. It sounds extremely promising, though.

Subject: Re: Re: Re: Re: Re: Radiation therapy From: CAROLINE To: ANYONE (esp. UK) Date Posted: Sun, Mar 21, 1999 at 04:53:16 (EST) Email Address: NA Message: My friend has had the concerned knee joint removed and now has to have radiation therapy. She is very worried. What if it doesn't work? Is amputation the only remaining option? PLEASE HELP!

Subject: Re: Re: Re: Re: Re: Re: Radiation therapy From: Bill To: CAROLINE Date Posted: Tues, Mar 23, 1999 at 15:04:36 (EST) Email Address: NA Message: My friend has had the concerned knee joint removed and now has to have radiation therapy. She is very worried. What if it doesn't work? Is amputation the only remaining option? PLEASE HELP! Caroline, please have your friend contact an Oncologist for an opinion. Radiation for PVNS does not have to be a heavy dose as it does in a malignancy. We have an Orthopedic Oncologist here in the Kansas City area that is one of about 100 that hold that title. Send me an e-mail if you wish to learn more.

Subject: PVNS/glucosamine From: Josh Sparks To: Everyone Date Posted: Sat, Dec 12, 1998 at 10:07:41 (EST) Email Address: NA Message:

Subject: Re: PVNS/glucosamine From: lori To: Josh Sparks Date Posted: Sat, Dec 12, 1998 at 22:24:20 (EST) Email Address: NA Message: Thanks for the info. It's nice to hear of your improvement, and very encouraging for all of us who are just starting to take the supplements. Goog luck with your new job.

Subject: Re: PVNS/glucosamine From: Bill To: Josh Sparks Date Posted: Tues, Dec 15, 1998 at 15:18:34 (EST) Email Address: NA Message: Josh, we will meet with my wife's Orthopedic Surgeon this afternoon to discuss final issues prior to surgery tomorrow. They will fuse the right ankle joints. I will ask about Glucosamine, might be of some help in the healing process. Thanks.

Subject: Re: PVNS/glucosamine From: Dan Krings To: Josh Sparks Date Posted: Wed, Dec 30, 1998 at 19:03:07 (EST) Email Address: NA Message: I have been taking the Glucosamine/Chondroitin supliments for nine weeks, with a surgery about 5 weeks ago. I recently went on a trip and was without the supliments for five days. Over the course of those five days my knee got stiffer and more painful with each passing day. When I returned home I immediately returned to my them and was back to "normal" function within 24 hours. I am fairly confident that they are helping. However, if I understand correctly, they help rebiuld damaged tissue. PVNS is at least partially caused by a proliferation of Synovium. Has anyone seen any information that says these suppliments could actually accelerate this "bad" growth?

Subject: Re: Re: PVNS/glucosamine From: Nenita To: Dan Krings Date Posted: Thurs, Feb 04, 1999 at 05:01:06 (EST) Email Address: NA Message: I have been taking the Glucosamine/Chondroitin supliments for nine weeks, with a surgery about 5 weeks ago. I recently went on a trip and was without the supliments for five days. Over the course of those five days my knee got stiffer and more painful with each passing day. When I returned home I immediately returned to my them and was back to 'normal' function within 24 hours. I am fairly confident that they are helping. However, if I understand correctly, they help rebiuld damaged tissue. PVNS is at least partially caused by a proliferation of Synovium. Has anyone seen any information that says these suppliments could actually accelerate this 'bad' growth? Hi. I am very interested in knowing more about Glucosamine/chondrotin suppliments. Ive had PVNS for 10 years, several ops & radiation later, the Pvns has returned and I now have cyst in the bone. My surgepn is good, but as far as I can tell I am the only patient he has seen with this condition, with the exception of one in medical school. I would be grateful for any information you could send. I am now re;ying on anit-inflams to get me through till the next flare-up. Thanks :-)

Subject: Solution? From: Bill To: Dakota Date Posted: Wed, Dec 09, 1998 at 17:40:56 (EST) Email Address: NA Message:

Subject: surgery From: Allen Coven To: Everyone Date Posted: Mon, Dec 07, 1998 at 14:31:11 (EST) Email Address: NA Message:

Subject: Re: surgery From: Yukio To: Allen Coven Date Posted: Wed, Dec 16, 1998 at 02:03:07 (EST) Email Address: NA Message: Allen,I have just started to study much of PVNS to share with you your pain. Yukio

Subject: Re: surgery From: Dan Krings To: Allen Coven Date Posted: Mon, Jan 04, 1999 at 15:13:14 (EST) Email Address: NA Message: after a long search I have finally located a surgeon in my area (Mid Atlantic States) with experience and a track record with PVNS. Important conclusions : the surgeon should be an orthopedic oncologist NOT an orthopdeic surgeon. The difference is crucial, PVNS is an oncology problem. Also, the hospital should be a large teaching hospital with all the acopanying facilities (radiation, MRI, etc.) It will usually involve 2 surgeons; one an oncologist and one an orthopedic surgeon to do the arthroscopic part of the surgery. Please note that the preferred course of attack is to go at the problem arthroscopically from the front and then to be flipped on to your back where the oncologist will do the 'old fahioned' cut and sew removal of the larger mass of PVNS. I just thought that I would relay some concerns that my Orthopedic surgeon and oncologist have discussed with me. Both of them have a lot of experience with open and arthroscopic knee surgery. First, Both of my doctors believe that surgery from the rear of the knee has more risk than benefits. There are several large arteries, veins, and nerves in that area. If any of these are damaged, or destroyed it can lead to loss of the leg..ie amputation. Second, in my case there is minimal growth in that are anyway and does not justify the risks. Finally, due to the fast growth of this disease it is unlikely that the additional surgery will significantly prolong the time between surgeries. I don't know if my doctors are taking the right attidude toward this problem. They both have extensive experience and seem confident. For now I will stick with their advice. One final thing. I have been taking the Glucosamine/Chondroitin suppliments for about two months and I believe that they are helping. My surgeon seems very impressed with the my speedy and relatively painless recovery from my last surgery (about 5 weeks ago).

Subject: Finally!!! From: Dawn Piasta To: Everyone Date Posted: Mon, Dec 07, 1998 at 11:24:03 (EST) Email Address: NA Message: Dr. Robert Bell of Mt. Sinai Hospital in Toronto and Dr. Brian O'Sullivan of Princess Margaret Hospital in Toronto. They are also experts in the field with many successful surgeries. Their approach is similar to the one stated in the previous message. First the Orthopoedic Surgeon removes everythng visible to the eye and then the area is Radiated everyday for 3-4 weeks. They have a superp success rate. The only problem they encountered was with a woman who received radiation treatment prior to their procedure. The two radiations caused a reaction to the healing process. This is unfortunately where I am right now, I have finally gained access to these wonderful doctors and they fear a similar reaction because I too was radiated once before. Right now they are reviewing my case to see if the isotopes will react with one another. There is hope on the horizon for all!!!

Subject: Re: Finally!!! From: Lori Giuffre To: Dawn Piasta Date Posted: Mon, Dec 07, 1998 at 12:24:00 (EST) Email Address: NA Message: Dawn, I am also a patient of Dr. O'Sullivan's. I too find him to be a wonderful Onocologist and person. You are probally the 'other woman' he has mentioned breifly to me when discussing other cases and the similarity with my own case. I have had quite a few surgical proceedures prior to my radiation. I have had some complications from the radiation, (side effects.) A few rough months and depression over them, but now seem to be on the right track. I too am fairly confident that I have made the right choice with the radiation, and hope that the worst is behind me. I wish you well!

Subject: Recovering...Again From: Dan To: Everyone Date Posted: Thurs, Dec 03, 1998 at 11:36:51 (EST) Email Address: NA Message:

Subject: Re: Recovering...Again From: Dakota To: Dan Date Posted: Sun, Dec 06, 1998 at 17:34:08 (EST) Email Address: NA Message: Dan, I just had a total "open" synovectomy ( and 5 weeks of Radiation ) by a wonderful surgeon...who is the Director of Orthopaedic Oncology at U.S.C. - a magnificent "teaching" Hospital in Los Angeles. It has been 3 months since the surgery. This man educates you and has had many patients with this disease. . . he lets you decide . . but says if it were him. . he'd do the Radiation. . .so I did. Dr. Lawrence Menendez (323) 342.5830 AND Dr. Lisa Chaiken (310) 828-0061 - Oncology Radiologist They are great. Good Luck

Subject: Re: Re: Recovering...Again From: Marilyn To: Dakota Date Posted: Wed, Dec 30, 1998 at 00:35:41 (EST) Email Address: NA Message: I have the same doctor that Dakota has...Dr. Menendez at USC. I had previously had 3 arthroscopic surgeries with another Orthopedic surgeon, each 6 months apart. Then in 1993 I saw Dr. Menendez and had an open surgery on both the front and back sides of my leg, followed by 30 days of radiation. The radiation did put the disease into remission for about two and a half years (which was a long time for me, given my previous experience). However, the disease did come back in full blooming rage. In 1997 I again had open surgery with Dr. Menendez. this time, no radiation was done. He said that I had already had my limit and any more radiation would greatly increase my chances of developing cancer....I don't need those kind of problems. It has now been a year and a half since my last surgery. As of my MRI scan in Septemeber, the tumors are back, but not bad enough to have surgery yet. I now have osteoarthritis and osteoporosis in that knee, due to damage done by the disease and surgeries and radiation.

Subject: SOLUTION? From: Bill To: Everyone Date Posted: Mon, Nov 23, 1998 at 00:05:40 (EST) Email Address: NA Message: The doctors will operate on Dec 16. They will open the ankle joints, do a complete synovectium (remove the synovium which contains the synovitus) and install bone grafts from the hip area to assist in the fusing of the ankle. A screw will be inserted through the heal bone up through the ankle joints and into the tibia to pull the bones together. After 3 or 4 months of healing the bones should bond together thus eliminating the ankle joints altogether. No joint, no synovitus. Well, not so. Synovitus can still be in the joints. After the healing process is complete,(it will be monitored frequently) radiation will be applied to kill any possible remaining synovitus. Radiation can not be applied prior to the surgery as it would harm the bone cells which are needed in the healing process. During the operation a screw will be placed in the broken foot bone which is a very simple and quick process. They expect Dodie to be able to walk better after the operation than she has in the past two years. Due to a very busy work schedule and caring for my wife, only very valid questions and input will be replied to but we do welcome those.

Subject: Re: SOLUTION? From: Dakota To: All PVNS sufferers . . . Date Posted: Sun, Dec 06, 1998 at 17:49:38 (EST) Email Address: NA Message: Bill has found what I have found. A terrific qualified Dr.. 3 months ago I had the surgery he speaks of. . . " Open synovectomy" mine of the right knee. My Dr., is the Director of Orthopaedic Oncology at U.S.C. - Los Angeles. . one of the top 'Teaching' - Hospitals in the world. Dr. Lawrence Menendez has treated many cases of PVNS with a very good success record. I followed my surgery with 5 weeks of Radiation. . . .a Dr. Lisa Chaiken - Oncology Radiologist - was the Dr. who worked in conjunction with Dr. Menendez on my treatment. For the first time in 2 years I am pain-free. I realize it has not been long enough - post surgery - to know how well and how long my treatment will last. . . but I am VERY pleased with the Dr.'s enthusiasm and determination to rid me of this horrible disease. Please give either of them a call if you are as lost and distraught as I was. . . Dr. L. Menendez USC (323) 342.5830 Dr. L. Chaiken Santa Monica Cancer Treatment Center (310) 828.0061 Good Luck to everyone - - - I will stay in contact - - - Dakota

Subject: PVNS specialist From: Auhood Majali To: Everyone Date Posted: Tues, Nov 10, 1998 at 09:59:00 (EST) Email Address: NA Message: As Allen Coven put it, the problem is to find a good doctor. So if any of you know a good specialist in PVNS, please send me his/her address.

Subject: Re: PVNS specialist From: Freya Johnson To: Auhood Majali Date Posted: Tues, Nov 10, 1998 at 12:35:44 (EST) Email Address: NA Message: In response to your request for a good doctor/surgeon for PVNS, I had surgury with Dr. Michael Wilson, Orthopoedic surgeon and head of orthopoedics at Brigham and Women's Hospital in Boston, MA. I have/had the diffuse form in my right ankle that caused extensive cartilage damage. The surgery was in March of this year, and was my second operation, but my first with Dr. Wilson. I will not be "disease-free" until I show no signs of its return for 5 years, but so far it has not shown up in an MRI. Dr. Wilson can be a little harsh on the emotions, as he is EXTREMELY direct, but he does not beat around the bush. I am confident that he is one of the few doctors out there that is very aware of the severity of PVNS. I had a complete synovectomy in my right ankle, had one ligament "sacrificed" and can no longer run long distances, but if the disease does not return, I will be forever grateful to Dr. Wilson. I hope he can help you!

Subject: Re: PVNS specialist From: Nancy To: Auhood Majali Date Posted: Wed, Nov 11, 1998 at 17:29:21 (EST) Email Address: NA Message: My doctor was also through Brigham and Women Hospital. His name is Dr. Brick and he has been studying PVNS for the past 13 years. He has operated on approx. 50 patients in his program. It is a research hospital in Boston. I hope they can help you.

Subject: Re: PVNS specialist From: JIM L To: Auhood Majali Date Posted: Sat, Feb 13, 1999 at 18:51:00 (EST) Email Address: NA Message: Hi, As Allen Coven put it, the problem is to find a good doctor. So if any of you know a good specialist in PVNS, please send me his/her address. DR GREGORY BRICK AT BRIGHAM & WOMENS HOSP' IN BOSTON MASS.. HIS ORTOPEIDIC GROUP IN INVOLVED IN A FEDERALLY FUNDED PROGRAM ON PVNS

Subject: finding the right doctor From: Allen Coven To: Everyone Date Posted: Fri, Nov 06, 1998 at 23:39:28 (EST) Email Address: NA Message:

Subject: Delaying Surgery From: Jim Morrison To: Everyone Date Posted: Wed, Oct 14, 1998 at 11:27:23 (EDT) Email Address: NA Message: Jim Morrison

Subject: Re: Delaying Surgery From: John Lu To: Jim Morrison Date Posted: Thurs, Oct 15, 1998 at 01:04:41 (EDT) Email Address: NA Message: Hello, My wife Helen had an open synovectomy 3 months ago and is now considering radiation as a follow up treatment. Have you considered receiving the external beam irradiation? Her doctors told us there are some good results from the radiation treatment. There is a small risk of side effects but we were told this is a way to reduce the recurrence. John Lu

Subject: Re: Re: Delaying Surgery From: Jim Morrison To: John Lu Date Posted: Thurs, Oct 15, 1998 at 13:05:52 (EDT) Email Address: NA Message: HI, My doctor did not mention anything about any kind of radiation treatments this time around. I did speak to a bone tumor specialist about two years ago and he suggested that I stay away from them. My femur is already weak due to the disease destroying 25% the bone just above the knee joint. From what I unsderstand, the radiation treatments weaken the bones and I don't think that I could afford to have my joint weakened any more.I think for now I'll stay away from them until I hear more proof that it does help. Jim Morrison

Subject: Re: Re: Re: Delaying Surgery From: Allen Coven To: Jim Morrison Date Posted: Fri, Nov 06, 1998 at 23:43:30 (EST) Email Address: NA Message: HI, My doctor did not mention anything about any kind of radiation treatments this time around. I did speak to a bone tumor specialist about two years ago and he suggested that I stay away from them. My femur is already weak due to the disease destroying 25% the bone just above the knee joint. From what I unsderstand, the radiation treatments weaken the bones and I don't think that I could afford to have my joint weakened any more.I think for now I'll stay away from them until I hear more proof that it does help. Jim Morrison May I inquire as to the city you live in and the hospital and surgeon you are using?

Subject: Re: Delaying Surgery From: Drew-kb2seo@juno.com To: Jim Morrison Date Posted: Fri, Dec 11, 1998 at 16:31:44 (EST) Email Address: NA Message: Hi Jim- Glad to hear things were caught as they were. The Knees are quiet for me,for now. no news is good news! Keep in touch

Subject: Injury related? From: Lori To: Everyone Date Posted: Sat, Oct 10, 1998 at 23:01:48 (EDT) Email Address: NA Message: I've been thinking about how many of us have injured our PVNS joint years prior to our diagnoses. Does anyone know of any research into this? Is that the starting point? Or is it just coincidence?

Subject: Re: Injury related? From: Phil To: Lori Date Posted: Sun, Oct 18, 1998 at 18:41:19 (EDT) Email Address: NA Message: Hi Lori, I definitely believe that injuries to my left knee over a period of 33 years - skiing, running, raquetball, etc. predisposed that joint to PVNS and osteoarthritis. I don't know of any statistical research but I have seen a few published papers that describe PVNS in football players who had knee injuries.

Subject: Re: Re: Injury related? From: Jeff To: Phil Date Posted: Sun, Dec 06, 1998 at 02:27:50 (EST) Email Address: NA Message: Hi Lori, I definitely believe that injuries to my left knee over a period of 33 years - skiing, running, raquetball, etc. predisposed that joint to PVNS and osteoarthritis. I don't know of any statistical research but I have seen a few published papers that describe PVNS in football players who had knee injuries. Phil, My 13 year old son is a National Level Freestyle rollerskater and takes a lot of falls during his practices learning to do the various jumps, spins, etc. He also has just recently experienced horrendous pains in his hips. The Dr. told us that it might be a form of synovitis. I was diagnosed with synovitis when I was 4, but have not ever had any treatment, or recurring incidents since. My son has really had a bad two weeks, and we are looking for information. Anything would help, thanks. Jeff Chilton

Subject: Re: Re: Re: Injury related? From: Dakota To: Jeff Date Posted: Sun, Dec 06, 1998 at 18:03:22 (EST) Email Address: NA Message: Hi Lori, I definitely believe that injuries to my left knee over a period of 33 years - skiing, running, raquetball, etc. predisposed that joint to PVNS and osteoarthritis. I don't know of any statistical research but I have seen a few published papers that describe PVNS in football players who had knee injuries. Phil, My 13 year old son is a National Level Freestyle rollerskater and takes a lot of falls during his practices learning to do the various jumps, spins, etc. He also has just recently experienced horrendous pains in his hips. The Dr. told us that it might be a form of synovitis. I was diagnosed with synovitis when I was 4, but have not ever had any treatment, or recurring incidents since. My son has really had a bad two weeks, and we are looking for information. Anything would help, thanks. Jeff Chilton Jeff, Well, here you are again. . . I'm just going through & trying to help as many as I can. I was a professional Stuntwoman for 17 years. All the Dr.'s say, it is NOT trauma related. Even mine whom I think the 'world' of. BUT, if you look & listen to all the different cases. they seem to be MOSTLY very active athletes. I, blew my knee out originally 11 years ago in a DOWNHILL skiing race. . .going 50 miles an hour. . . .I thought all my problems stemmed from that...turns out ...the knee blew 'out' BECAUSE I had this disease from when I was born and therefore it was weak...!!! BUT, you know what...it really doesn't matter. If you've got it , you've got it. As I said before, you DO NOT KNOW you have it for sure unless you've had a biopsy, which is done with an arthoscope. Another suggestion I have IS. . . .going to a Rheumotologist. A Dr. of the joints. Dr. Orrin Troum is the head of Rheumotology for U.C.L.A. and his office is in Santa Monica. He is the one who FIRST, described this illness to me, he is a brlliant man. . . and takes the 'time' to go over all options. It sounds as though, HE should be your first step. . . . I have 2 kids, so I know how frustrating this can be. . .let me know how it goes. . . Dakota

Subject: Re: Injury related? From: JIM L To: Lori Date Posted: Sat, Feb 13, 1999 at 18:57:01 (EST) Email Address: NA Message: Hi everyone! I've been thinking about how many of us have injured our PVNS joint years prior to our diagnoses. Does anyone know of any research into this? Is that the starting point? Or is it just coincidence? I FIRST HURT MY KNEE IN 1984, FELL AND CHIPED MY KNEE CAP, AFTER 4 YRS OF STEROID SHOTS I WAS DIAGNOISED WITH PVNS, AFTER A SCOPE

Subject: Re: Injury related? From: Marci To: Lori Date Posted: Wed, Feb 24, 1999 at 12:00:12 (EST) Email Address: NA Message: Hi everyone! I've been thinking about how many of us have injured our PVNS joint years prior to our diagnoses. Does anyone know of any research into this? Is that the starting point? Or is it just coincidence? Lori-have you been able to find anything on this. I am interested. I have a client who sustained a severe trauma to his hip and was later diagnosed with PVNS in that joing. Please let me know what you've found. -Marci

Subject: PVNS Page From: Maarten Balliauw To: Everyone Date Posted: Sat, Oct 10, 1998 at 15:23:06 (EDT) Email Address: NA Message: http://come.to/balli This message is just to say that: - We are now also at http://come.to/pvns - The site has updated and has a new layout - A chat is added Enjoy, Maarten Balliauw

Subject: PROBLEMS STILL PERSISTING From: MEGAN To: Everyone Date Posted: Sat, Oct 10, 1998 at 10:57:50 (EDT) Email Address: NA Message: I have been supplied with a leg brace, as well as a wheel chair and I am feeling pretty desperate at the moment.

Subject: bay area doctors? From: Nadia To: Everyone Date Posted: Mon, Oct 05, 1998 at 22:12:32 (EDT) Email Address: NA Message: I will be moving to the bay area at the end of the month and am wondering if anyone can recommend a good orthopedic surgeon (with pvns experience) in that area? Thanks - Nadia

Subject: Re: bay area doctors? From: scott To: Nadia Date Posted: Wed, Oct 07, 1998 at 21:05:39 (EDT) Email Address: NA Message: I don't know any orthopods here, but I did endure a course of radiation treatment at UCSF a few years ago. They seemed to know what they were doing, and they gave out free buttons that said 'Happiness is the Last Day of Treatment'. The radiation oncology department at UCSF could direct you to a surgeon with some experience.

Subject: Re: bay area doctors? From: Phil To: Nadia Date Posted: Sun, Oct 18, 1998 at 18:50:31 (EDT) Email Address: NA Message: Hi Nadia, I would recommend Dr. Gary Fanton, 650-851-4900. He did arthroscopic surgery on my left knee discovering PVNS in April 1996 and again in April 1998 using RF radiation to eliminate the PVNS. I've recovered very well but reinjured that knee by falling off my bike two months later. My main knee problem is now osteoarthritis. Good luck, Phil

Subject: pvns From: Allen Coven To: Everyone Date Posted: Sun, Oct 04, 1998 at 14:25:40 (EDT) Email Address: NA Message:

Subject: Re: pvns From: Michel Tricolla To: Allen Coven Date Posted: Fri, Feb 12, 1999 at 16:54:35 (EST) Email Address: NA Message: I am searching for a surgeon or surgical practice that has experience with pvns. So far, I have had no sucess. Any replies with the names, addresses, and phone numbers of surgeons with experience with pvns would be greatly appreciated. I am located in Maryland (USA) and would gladly travel whereever necessary to get an experienced diagnosis and treatment/surgery. Allen, This message may be a little late but there is a Doctor in NYC. His name is Dr. Samuel Kenan. He is the Chief of Orthopedic Oncology at Hospital for Joint Diseases and also at NYU. He performed 2 of my 4 surgeries and I find him very thorough. His phone # is 212-598-6350.

Subject: Glucosamine From: Marilyn To: Everyone Date Posted: Mon, Sep 28, 1998 at 08:33:35 (EDT) Email Address: NA Message:

Subject: Re: Glucosamine From: Cindy To: Marilyn Date Posted: Thurs, Oct 08, 1998 at 15:52:12 (EDT) Email Address: NA Message: Try the Chondroitin SUlfate as well Marilyn..they work together to combat the osteoarthritis...Im also getting acupunture to help with the pain...

Subject: Re: Re: Glucosamine From: Lori To: Cindy Date Posted: Sat, Oct 10, 1998 at 23:05:07 (EDT) Email Address: NA Message: Try the Chondroitin SUlfate as well Marilyn..they work together to combat the osteoarthritis...Im also getting acupunture to help with the pain... Cindy I have started the Chondroitin Sulfate and the Glucosamine Sulfate. I'll let you know if I find any improvement. What doseage are you taking? How is the accupuncture going?

Subject: Re: Glucosamine From: Dan To: Marilyn Date Posted: Mon, Dec 07, 1998 at 13:44:18 (EST) Email Address: NA Message: Marilyn, I was just curious, and looking for an update. I started taking the Glucosamine/Chondroitin combination about four weeks before my recent surgery, and have continued it for the two weeks since the surgery. My doctor is of the opinion that it probably won't do any harm, and it might do some good, so why not try it. Anyway, the bottle says that there won't be any effect for about 60 days after starting to take it. I have no way of knowing if the drug, or the surgery has produced the results that I am seeing. I was hoping to hear if anyone has seen any improvement after a longer period of taking it.

Subject: glucosamine/chonodroitin From: Cindy To: Everyone Date Posted: Sat, Sep 19, 1998 at 19:51:40 (EDT) Email Address: NA Message: