My Pain, My Life, My Sport.

I'm spanish 40 years old and I have PVNS in my left ankle. I perfectly know why is due (in my case)...I love sports and I had lots of problems with that ankle when I was young due to a very bad treatment (probably my own fault). I had a terrible ankle sprain when I was playing basket (I was about 18). I did not follow doctor advise as I should and since then I have had lots of problems with that ankle...I have had at least 11 sprains after that one...but not so severe like the first one. However, each time the tissue around my join was getting a bit bigger. Eventually, this tissue was getting harder like an stone attached to my ankle, then in 2002 I started limping sometimes...a few month later the limping was continuous. So I went to the doctor, they told me it was PVNS and finally got open surgery on 2003 (I think a better doctor would have done synovectomy). They removed all synovial liquid from inside my ankle and they also removed the synovial stone for analysis (they thought could be a tumour)...It was not a tomour...that was the best part of the tale. The reality is that I was devastated when I saw the consequences of the open surgery. Then I went to rehab...thinking I could be come back to normal...but sorry never again. I stopped running, playing football...and all kind the sports where I have to run...my ankle could not bear it any longer. Fortunately I love swimming and love trekking in the mountains...lately I have started cycling... The pain is always there, especially when I stopped sitting for a few hours. i alwasy have to warm up before start walking. But there is something I have learnt: 1 Being fat does not help at all..so I'm always fighting with my weight to reduce the weight my ankle have to bear 2 Stop moving only make things worst... I always feel better when I can practise some daily exercise. Swimming is the best...no weight at all and lots of nice ankle movements. I used to swim at least 1km every day at least 5 times a week. Unfortunately I have sensitive skin and now I have some issues with my ears so I cannot swim so much... 3 Walking is great (after warming up the pain disappears) and it's my prefer sport (do it slightly but constant)...I hope that I will not have to stop walking the mountains due to my PVNS 4 If for any reason I cannot do exercise the pain is getting much worse. 5 I dont' do silly things (don't jump or run)...my ankle it's always in my mind. Lately I start limping again quite frequently...I think it's getting worst again...but I will avoid new surgery If I can. I will keep my daily exercise routine...till I cannot do it anylonger...then who knows...
berbiquin berbiquin
36-40, M
3 Responses Aug 2, 2010

Ive had PVNS since about my late 20s. I always knew there was something wrong with my right knee even though I had little swelling or pain. Its just like there was something growing in the centre of my joint. I knocked my knee on my desk at work in 2001 and thats where my pain started. Persistent swelling and pain. I went to so many doctors without relief until I found a specialist who recommended surgery. He actually figured that I had a torn meniscus until when he was actually doing my arthroscopic knee surgery. He removed two tumors and told me that they may recur. He never really told me I had PVNS and thats why I had the tumors. This was 2003. <br />
<br />
Surgery helped for a while until around 2007, started having symptoms again. I never actually knew I had PVNS until I went to a different specialist in 2009. I did a knee aspiration which helped for a while. Then the symptoms started to persist again.<br />
<br />
He is recommending surgery but I really don't think that will help me. I find that when I work out at the gym I have better mobility and less swelling. I think if I have surgery things may just get worse. So for now I'll continue to work out and take prebiotic supplements. That has worked for me so far in reducing my swelling and pain. Oh and let me add prayer to my list.<br />
<br />
I hope some day there will be a cure for this disease.

Ive had PVNS since about my late 20s. I always knew there was something wrong with my right knee even though I had little swelling or pain. Its just like there was something growing in the centre of my joint. I knocked my knee on my desk at work in 2001 and thats where my pain started. Persistent swelling and pain. I went to so many doctors without relief until I found a specialist who recommended surgery. He actually figured that I had a torn meniscus until when he was actually doing my arthroscopic knee surgery. He removed two tumors and told me that they may recur. He never really told me I had PVNS and thats why I had the tumors. This was 2003. <br />
<br />
Surgery helped for a while until around 2007, started having symptoms again. I never actually knew I had PVNS until I went to a different specialist in 2009. I did a knee aspiration which helped for a while. Then the symptoms started to persist again.<br />
<br />
He is recommending surgery but I really don't think that will help me. I find that when I work out at the gym I have better mobility and less swelling. I think if I have surgery things may just get worse. So for now I'll continue to work out and take prebiotic supplements. That has worked for me so far in reducing my swelling and pain. Oh and let me add prayer to my list.<br />
<br />
I hope some day there will be a cure for this disease.

I feel ur pain! Although I don't remember ever injuring my hip, I have too have PVNS in my left hip. I have had two surgeries and can't have anymore. Have u heard of Gleevec? I see Dr. Bouda in Overland Park Kansas to receive the medication. Its basically chemo therapy in a pill with fewer side effect, mostly nausea. Anyway, the medication gets rid of the tumors and keeps them away, as long as u stay on the treatment! There is still no complete cure. I wish u luck! This disease is a real dream killer if u let it be. It seems u have found a way to still do some things u enjoy and I applaud u for that!!!