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PVNS: experience and causes

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morphix
morphix

I recently got diagnosed with the fairly rare condition called Pigmented villonodular synovitis (PVNS) a disorder which affects joints. In my case, it was my knee joint, as is often the case.

I'm posting this to help others better identify and understand this condition, and also to explore any possible causes.

PVNS is very easily misdiagnosed by GP's. It was misdiagnosed twice in my case, by two different doctors.

Because it's more common in the 30's and 40's age group, and the symptoms are similar to arthritis, it can be misdiagnosed as the early onset of arthritis of the knee/joint in people who are in the upper end of this age bracket.

In the case of the PVNS affecting the knee joint which results in a tumour growth at the back of the knee (as in my own situation), because the condition often arises after a trauma to the knee joint, the condition can be misdiagnosed as a simple lingering knee injury, leaking joint fluid, giving rise to a Bakers Cyst.

The symptoms of PVNS are both sporadic and very similar to both an ordinary knee injury and arthritis as the condition progresses. The joint becomes stiff and movement restricted. It's usually painless in the early stages but as it progresses it causes mild to moderate discomfort with a persistent burning pain around the joint area.

If left untreated, PVNS in its advanced stages, can render the joint completely unusable, requiring a complete joint replacement.

Here's my own experience of PVNS:

I was taking Tramadol (a painkiller) for back pain and was heavily into exercise and was also carrying a heavy bicycle every day up and down stairs. I injured my knee. This was due to the Tramadol I believe. My pain tolerance threshold was at a much higher level, so the injury didn't fully register and I continued exercising and carrying the bicycle, further straining the already injured knee.

Two years later, the knee joint gradually became stiffer and a lump appeared at the back of the knee. It became so stiff I could no longer crouch or bend down to tie my shoe laces. I went to the doctor and was misdiagnosed as mentioned. The second GP ruled out arthritis from an x-ray and to confirm his diagnosis of a leaking joint and Bakers Cyst, he requested an ultrasound scan of the joint. The scan showed an overgrowth on the lining of the knee joint and a tumour growth, resulting in a PVNS diagnosis by an orthopedic consultant.

A proof-positive diagnosis is carried out from sample by examining cells under the microscope from the joint which have the typical PVNS-like abnormal characteristic.

There's two forms of PVNS, localised and diffused. The localised version is what I have. It is a lot easier to treat using key-hole surgery with a better prognosis for recovery. Diffused PVNS affects the entire joint lining, requiring open surgery to remove all of the knee lining and it has a much higher risk (almost 50%) of returning, and requiring extensive physiotherapy.

PVNS is quite a rare condition as I mentioned. Therefore it's not encountered very much by GP's and there hasn't been much research done into the causes of the condition or why it returns in many sufferers. It's not thought to be hereditary, and as I mentioned, trauma to the affected joint is a common feature.

This leads me to wonder if certain medicines, or activities, may cause the condition. As I mentioned, in my own case I was taking Tramadol (at a normal dose of 50mg once daily) for several years, both prior to, and after my knee injury.

I'd be interested to hear from anyone else out there who suffers with PVNS and their backgrounds, in particular:

Anyone who has developed PVNS while being on Tramadol or similar drugs?

Anyone who has developed PVNS after a sports or work related injury, which they ignored?

How much time elapsed from any initial injury to PVNS symptoms and diagnosis?

5 likes, 296 replies

296 Replies

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  • mattiemouse
    mattiemouse morphix

    Posted

    It is now 8 weeks since I underwent a total knee replacement having damaged my knee in an accident 7 years ago. I have had 3 unsuccessful keyhole repair ops over the last 5 years. During the TKR op, advanced PVNS was discovered and my orthopaedic surgeon removed several giant cell tumours and sarcomas. It was at an advanced stage and had eaten into the bone, so extensive bone grafts were also done. I am now under the care of an oncologist and will start a course of radiotherapy in the next couple of weeks to prevent the spread to other joints. There is still swelling and stiffness in my knee despite daily hydrotherapy, but that should clear once I have had treatment.

    It has only been 8 weeks since the op but I am already feeling the benefits.and for the first time in years am walking pain free.

    I found Tramadol just made me hallucinate and didn't help with the pain at all, just took my mind off it. My GP changed my prescription to diclofenac, good but not great for long term use. It has been recommended that I take a long term daily dose of ibuprofen.

    I'll let you know how the six weeks of radiotherapy goes!

  • benbailey01
    benbailey01 morphix

    Posted

    I am currently awaiting a knee arthroscopy for a second bout of PVNS. I had full open knee surgery about 7 years ago as I had diffused pvns. Up until last October I was pain free and managed to run several marathons in the 6 years since the first operation. Sadly the pvns has returned although it's only a small amount this time and can be dealt with via keyhole surgery. It's currently very swollen and I cannot wait to have the operation and get it all out of the way. I want to start running again!
    • Oldfatguy1
      Oldfatguy1 benbailey01

      Posted

      You are fortunate. Mine blew up with tremendous bleeding in Sept 2002. Now waiting for 11th surgery as it's eaten up my knee and the tkr. Due to the revision of had 2 bouts of staph and sitting here with no knee. Will have another prosthesis inserted June 22nd. I still have a little of the tumor left that can't be removed as it's in a nerve bundle and there is too much chance of losing the leg. I was 65 when it surfaced. I also had 30 rounds of radiation which I don't recommend as it burned the he'll out of my leg.

      One of the surgeries was a synovectomy. According to the orthopedic oncologist, it was the longest scope (90 minutes) she had ever done because of the extent of the tumor.

    • benbailey01
      benbailey01 Oldfatguy1

      Posted

      Sounds like you've been through the mill! I'm only 34 now so at 27 when I first had it I was quite young. When the symptoms came back I went back to the knee specialist I saw the first time and he basically asked me if I wanted the surgery. He said it was very small and may just stay there forever not getting any worse. I just want it out now though. I get the odd day like today where I can hardly walk as it's so swollen. Thankfully it's only every few weeks it's like this and not for long
  • artur16382
    artur16382 morphix

    Posted

    Hellp Morphix

    My 26 years old daughter has an problem with an knee and after MRT we have done knee surgery in Germany.

    Before surgery doctor cannot see any sign of PVNS although he should be see.

    Doctors says he was removed all the needed part.

    After surgery she was diagnosed as an PVNS and should take an radiotherapy in 6 weak after surgery.

    In one month after surgery the knee condition is not so good. Doctors says it should be OK in 2-3 month after radiotherapy.

    - Should we go to phisoterapie before radiotherapy? or it's necessary to go to phisoterapie after radiotherapy.

    Sorry on my english

    A lot of thanks

     

  • allan_will90374
    allan_will90374 morphix

    Posted

    Hello sorry to hear about your problem, I have had a lot of issues with not being diagnosed quickly enough so here is my story.

    About 13 years ago I injured my knee playing football and was told it was ligament damage through local NHS, told to take it easy and it would settle down, things we ok for a while struggled for about 6 months but no pain knee just felt stiff.

    Then one morning woke up and had a 6 in x 3 in lump on the back of my calf, later found that it was a bakers cyst. It was connect to my knee as when I squeezed my calf guild would transfer to my knee and vica versa, to cut a long story short, multiple drainage and cortisone injections followed, then had 4 key hole surgeries and bakers cyst removal followed. Knee felt good but now had pvns. So fluid was still being produced by my knee lining into my calf. Due to the damage of my knee was transferred to wrightington hospital in Wigan and was told that a synovectompy was required but due to it being connected to my calf they didn't want to do chemical or surgical. Was put on sulphersalizen for a year but no different, was then placed on 15ml of methotrexate which finally stopped the swelling but introduced side effects and told that I would probably need a replacement by 40 years old. I am now 37 and moved to Perth Australia 4 years ago and have not taken any medication for 3 years and knees have never felt better. Prior to moving I had taken methotrexate for 3 years. If you can I would recommend moving to a warm climate if possible as the chore of getting up and moving around for 10 years prior has almost gone, oneDay I might even be able to kneel down on the floor again

  • artur16382
    artur16382 morphix

    Posted

    Hello allan will90374,

    So you injured your knee playing football when you was 24 years old.

    The same way my daughter  hit the knee to the door twice when she was 25 years old. Yes, as you mention the best can be in our cases to be diagnosed quichly enough to not to do differnet treatment..

    By the way after knee surgery we take an radiotheraphy at July 23 and have to do another MRI in 3-4 months to see if the knee problem was resolved...

    From other hand we  have to be positive, that in some day  we will not have kbee problem at all.

    Good luck...

      

    • fadi_48579
      fadi_48579 artur16382

      Posted

      God bless you and your daughter and as well for you Alan. I hope your MRI does show pvns Alan. I'm 23yrs old an hurt my knees in a car accident last June. I just had arthroscopic surgery on both knees 5 weeks ago an was then dignaosed with pvns in both knees. It's a very hard battle bc even after 5 weeks I'm still in pain but I will be seeing the doctor in 4 more weeks to do another MRI to see if the pvns is coming back. Let's pray not. The hardest part for me is the emotional not even the pain bc I was a very athletic kid going to the gym 5 days a week playing sports and working on my feet all day. Now it comes where some days I can't even walk! Every day is a new day an don't get me wrong some days are defiantly worse then others but hey you gotta keep on keeping on right. I'm not sure why my op didn't suggest radiation but we'll see what happens when I go back to see him. I really don't want to do the open syvectomy bc I can't imagine how hard the recovery will be. Please both of you keep in touch an god bless.
    • Oldfatguy1
      Oldfatguy1 artur16382

      Posted

      I was 65 and didn't on our or damage my knee to my knowledge. It just broke open and started bleeding (internally). I was fine at noon....Sat down with a client and around 3 started to get up and the swelling and pain hit me. My knee had swollen around 5". I had a 30 min drive home and nearly had to crawl to get in the house. Almost 13 years and I've never been the same. Pain ,surgeries, radiation. One Damn thing after another. In the back of my mind I know there is a hot spot left in a bundle of nerves and a little miss with a scaple and boom goes the leg. I know of one girl that had either 13 or 16 surgeries before age 22. It was going joint to joint.knees, ankles, wrists.....I read of one case it was in the jaw. Not a scare just the truth we face. My advantage is age. If it grows slow I'll be history before it gets me

      Apparently having it blow up early in life is the best hope for getting it all. It had completely engulfed my knee and within in three days I was bleeding back into my abdomen. Me v 1st had much bleeding since then.

    • allan_will90374
      allan_will90374 fadi_48579

      Posted

      Sorry to hear your suffering, I too was never offered radiation therapy and was advised against synovectompy, so went down the rheumatology route, I too was very active in sports and didn't really do anything for 10 years, I now am able to perform non impact sports and regularly play golf and cycle. But I remember when I started my treatment on methotrexate it was like a light switch the week after pain and stiffness and swelling went, although it did come with multiple side effects. Reflecting back over the 14 years when my problems started, the doctors didn't know what was going on, it was all trial and error for 6 years. The amount of pain I was in having joint drained and cortisone injected, sometimes twice a week could of been avoided. Cause it made no difference, they only stopped that due to the cortisone thinning the tissue.

      Hopefully things get better for you and like I said living in Australia over the last 4 years with no meds I have never felt better I can actually play with my 2 kids now

    • allan_will90374
      allan_will90374 artur16382

      Posted

      Hello, artur

      Yeah sounds similar but I was left for roughly 3 years with a ligament damage diagnosis from my good old A & E even after numerous visits, they only reacted when I developed a bakers cyst the size of the Empire State Building, I can't comment on the radiotherapy as I went down the rheumatology path, but reading the forums it seems like it's 6 of one half a dozen of the other as I had multiple side effects of the methotrexate and had to go for blood tests every week phased out to every month and chest X-ray every 3 months. I strongly recollect though being told that a synovectompy was the way to go but to mine being so bad either surgeon wanted to perform the chemical or manual method as they said they would distroy my calf muscle.

      Open everything goes well and at the nowadays these forums are here to share and enables people to understand and maybe even prompt medical professionals to other options, as 13-14 years ago I had nothing, and was oblivious as to what the next 10 years + had in store for me, even now I show work colleagues pictures after surgeries and some can even look at them

    • fadi_48579
      fadi_48579 allan_will90374

      Posted

      Wow that's a beautiful thing I'm very glad things are working out for you. Know you think the medicine is what helped you? You didn't do any surgires or anything to try to remove it. If you don't mind me asking what were your side affects from taking the medicine
    • allan_will90374
      allan_will90374 fadi_48579

      Posted

      Hello fadi, no I had 5 operations in total, 4 keyhole and 1 bakers cyst removal. Have a read of my other posts for my story, now since I moved to a warm climate I haven't taken any meds for 3 years but I am careful as to what physical activities I expose myself to, and changed profession to a desk job
    • allan_will90374
      allan_will90374

      Posted

      Sorry fadi the side affects I had from the methotrexate were thinning hair, periodic ulcers in my mouth, vomiting sometimes after taking meds, lower immune system, so longer recovery from illness and seemed that whatever bug was going around I would catch it. It recommended not to drink alcohol due to kidney issues, managed alcohol free for a year but then started drinking on the odd occasion as I was mid 20s. Just google the meds for full list as they react differently to different people. The big one for some people is not being able to conceive whilst on this, due to potential birth defects.
  • Roach
    Roach morphix

    Posted

    Hi Morphix,

    This is a very late reply - over a year - but I thought I'd add a brief of my own journey with PVNS. I'm from Adelaide, Australia.

    I developed the difuse form in my left knee back in the mid/late 80s after a drunk fell down on me at a party.

    The first 'Debaulking' synovectomy was in 1989, and after another 10 such arthroscopic procedures and a Yttrium radio isotope injection, I changed surgeons.

    Over the next 12 years I had another 20 post/ant open synovectomies to clear my joint of this agressive disease. Eventually the collective damage from the disease, the amount of scar tissue around all the nerves & vascular stuctures, and the damage done to my articular cartilage from the radiation reduced my functionallity to very limited.

    Without anything further I could do, I did 3 years in an 'Unloader brace' to releive the load on the now collapsing medial side of my knee.

    Eventually by Feb 14 - with a conventional TKR not an option due to active pvns, and the huge bone loss/damage - the only other advice from another surgeon was amputation, which I dismissed imediately.

    I consulted my normal Surgeon, who by now was the Ass Prof of reconstructive musculoskeletal tumour surgery at Royal Adelaide Hospital. Mark offered me a proximal femoral implant.

    So they basically remove the entire joint from a third way up the Femor, and down to the Tibial plateau. Replacing the whole lot with an OSS/Compress metal prosthesis. 

    I undertook this operation in May 14. A big operation of 5 hours, but recovery was very good and very positive. I made this my mission!

    I'm very happy to say that this has been the best ever thing I've had done. I was down to hobbling no more than 5k steps a day, but now I can easily do upwards of 25k a day again with out too much pain.

    PVNS can be a totally bad experience, but not always the case. In my case, it has shaped, limited, cost & and tarred my life with so many impacts I can't even begin to sum up where the fight has taken me.

    I hope this wasn't a negative read... its just the truth of my experience.

    Cheers & regards,

    Roger

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