This is the PVNS story of Dawn Piasta
From the Beginning
This is going to be long, but bear with me, the process is complex, any one suffering from PVNS will share this anguish. In 1992, after a summer of building a new home I started to develop pain in my left knee. You know the usual aches and pains but I am only 28, I grew concerned.
So, with this I went to my GP, was told "not to worry about it", "it's only, house wives knee, similar to tennis elbow." With a prescription of Anti-Inflamatories I was sent on my way.
A month later the condition steadily got worse, and a "hot dog" shaped lump developed below my left knee cap. My GP tried to excise the "fluid" with no luck. She injected me with cortizone to eleviate the pain while I awaited a Knee Specialists opinion.
Dr. Knee KNEW it was a torn cartilidge, so arthroscopic surgery was scheduled to repair it. To Dr. Knees suprise there was a knotted up mass of ??? so he took a biopsy to analyze. PVNS was detected.
I was given 3 options:
1: Take Anti-Inflamatories and bear with it.
2: Radiation/Surgery
3: Joint Replacement.I was young, I felt it could go away, so I left it.
I continued my search search everywhere. I went to a Sports Injury Clinic, once they found out what I was diagnosed with was sent on my way with "Sorry, Nothing we can do, you'll have to live with it."
When I couldn't stand the inflamation discomfort anymore I asked my GP for more help. I was sent to a Rheumatologist, in Winnipeg MB. Dr. El Gabalawy suggested we try Radiation to "Kill" the PVNS. Dr. El was very understanding to my situation and wanted to act ASAP. I was luckily included in a research project to track the effectiveness of Radiation on the Synovium. So, I would not have normally been scheduled for an MRI, but the acute size of my synovium made way for my first MRI. While undergoing the scan, the Dr.'s questioned me what exactly I had, they had never seen such a thing. This fueled my search for information much more. This is when I started to search the internet for help. The few "ads" I posted brought considerable information.
October 1994
I was then injected with P-32 Radiation directly into the knee. A follow-up MRI concluded that we stopped the growth. For about four months...The doctors were lost as what to do next, surgery was the only option. And nothing could be done until the Radiation was out of my system. A few years!!
So I waited.
In the meantime the swelling persisted, and set me really out of order. A chiropractor straightened out my wrenched back and suggested we try Ultra-Sound and use a Tense machine to bring down the swelling. It was amazing in a matter of four sessions he shrunk my swelling by over an inch.
As time went on I became quite impatient, I just wanted a Dr. to get this stuff out of me. At times I had to beg, finally I saw Dr. D. Lytle of Winnipeg. I showed him my knee and let him know I was ready for the time consuming surgery. "Fine" he said, "but I can't do it next week, when Is good for you?"
Well, since all of this, in October 1996 I had an Open Synovectomy which left me in the hospital for a week and in Physio-Therapy for two months. I can slowly gallup up stairs, and get back down, the muscles are rebuilding, I hope it is over. Dr. Lytle sent me on my way, with hopes of not seeing me again.
May 1997
"Sure?" I thought, from everthing I have heard it can regrow. SO... I sent Dr. Lytle information that I found suggesting MRI scans to be the best way to keep tabs on PVNS. I am schedule for June. Ask and ye shall receive.
August 1997
June has come and gone long ago and the results came back showing a trace of PVS on the rear side of the joint. UGgg! The Doc said to leave it until it starts to aggravate me. Just below the knee cap I can feel a "node" which doesn't seem to be growing but I think it is upsetting my walk, and bugging me not knowing what it is. Friday I Faxed my Doc to request another MRI probably won't be til May or June, that will be a year since the last. The last few months I have been having more and more pains and swelling...mostly from the back....it's back!
Spring 1998
My knee has really been bugging me lately. At times when I walk I grasp my breath because of the pain in the joint. But then again sometimes it feels so good I have actually jump-roped!! The pain is usually on the outside edges of the joint and the back sometimes throbs. Glucosamine Sulfate 1000mg still helps quite a bit.
October 9, 1998
I have since had another MRI.. The results come back with these this report: "traces of PVNS located in virtually all the recess of the joint". This I am not suprised with, I knew it all along. I wonder if I could have eliminated it (PVNS) if I had it removed when it was first detected after my June 97 MRI results. At least open surgery could have been avoided.
AS TIME GOES BY:
My reply to letters I received by Email:
ANSWER: Question your doctor WHY he chooses to use arthroscopic surgery when an open synovectomy is a more thorough removal? Do you have difusse or localized PVNS. If you have difuse I would refuse to go any way but open synovectomy. It is much more drastic and takes much more time to heal but worth it in the long run.
The thing with PVNS is it is not life threatening. So do YOUR research as well and as ask TONS of questions!!! Also keep a detailed diary of everything that is done to you. I was tossed from one Dr. to the next and felt like no one knew my complete history. The doctors I just recently saw in Toronto Ontario are also experts in the disease.They conducted a study spanning almost 30 years and including 24 patients. Their findings prove that radiation AFTER a complete OPEN synovectomy completely rids the system of PVNS. The process they use requires the area to be radiated DAILY for 21 days following surgery. Dr. Robert Bell of Mt. Sinai Research Hospital in Toronto, and Dr Brian O'Sullivan of Princess Margaret Hospital in Toronto were two of the doctors to publish their findings in Medical Journals in 1996. I unfortunately found them in Dec/98. My "Neoplasm" was removed completely in 96 but not radiated. In 97 it showed up in a minut form with use of an MRI it was then left. In 98 another MRI revealed its growth once more. My case is complicated by the fact that I had received a radiation injection in 94 before surgery. Now where I stand is there is too much PVNS to be removed by only radiation and not enough growth to warrant nerve damage with a surgery. Also the two types of radiation may react unfavorably so now isotope research must be done before they do anything to me. I sit and wait again. But now I am in good hands.
As for joint and tendon damage I am not too sure of. I have heard that if PVNS is left it can and will eat away at the bone. My Doctor assures me that no matter what it does to the bone/joint this can be corrected but nerves are a completely different thing. (ex: Joint replacement) Nerves can't be fixed or replaced, so we wait.
ANSWER: Wow! A bone scan. Why would he want to do a bone scan if there is no PVNS visible would be my question? What information would he gather from the results? PVNS is not life threatening, right? Maybe there is something he's not telling you? I have heard that PVNS can deteriorate bone matter but only after lengthy exposure? Does he want the bone scan for the PVNS or the Osteo?
I would assume that Radio active isotopes are some what evasive to the system and must have some type of effects on the body what can he tell you about them? I don't remember if you mentioned your age, but back when I went through the radiation treatment in 93 my doc was very insistent on the fact that I should not plan on having more children after I underwent Radiation treatments.
As for level of pain I experience...I will try to explain.
But first off, My level of pain on a day to day basis is no worse than someone suffering from mild arthritis suffers with. It is completely manageable.
Moving from a "sort the laundry position to get up quick to catch the phone position" takes a bit of time and kind of makes me pause. Most of the time my knee used to feel like a balloon that cannot take any more air. It never hurt, it was just clumsy and limited me. If I pushed it, it would pay me back with inflammation and tenderness.
Sometimes when I am walking I hear my joint "pop" or "click", this doesn't hurt. If I have done a lot of sitting the back side of my knee becomes very swollen, almost like a ping-pong ball size knot. It hurts and causes more pressure on the front side. With this I have find that massaging it, icing it, applying a muscle stimulator to it helps reduce the swelling. The thing I hate the most is when I am trying to do leg lift exercises. I can lift them both together but when I try to lift and flex my effected knee(left one) it make horrid squishing, and crackkly noises. Which are apparently synovial fluids squishing around. But as time has pass and I persisted with these exercises, the noises have just about disappeared.
While I stop to really think about this I come to the conclusion that the pain is only as bad as I will let it become. I try to put it into perspective. My friend who has terminal brain cancer and who has had numerous radiation treatments and just finished her second Chemo treatment hardly, if ever, complains so why should I. PVNS is not a terminal illness, therefore I will not put myself through any evasive procedures until I absolutely cannot stand the pain any longer.
The Oncologist I met in Toronto told me that he was going to follow "a wait and see" philosophy. In this situation he knew exactly what he was dealing with and saw no reason to mess around with something that don't need fixin'. He told me that I know my body the best and if I feel that something needs to be done, he will have me on file in his office and will not hesitate action. Don't fix what ain't broken. It has been four years since my Synovectomy.
Dawn