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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

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  • krista5280
    krista5280 morphix

    Posted

    I recently got (potentially) diagnosed with PVNS. My knee has been in pain and very swollen for almost three months, and after finally seeing a doctor and getting an MRI the radiologist said it seems like it might be PVNS in his report. My doctor decided though that whatever is in my knee might improve on its own and wants me to wait 10-12 weeks, get another MRI, and then see him again.

    I have an appointment for a second opinion soon, but I guess I'm posting here because out of anyone I figured that people suffering with PVNS might understand my frustration with the constant pain and feeling let down by doctors

    • cryogen
      cryogen krista5280

      Posted

      Hello Krista. Sorry to hear about your condition. I recommend getting that second opinion soon, based on which you could decide how you wish to proceed. This is not a malignant tumour, as it normally affects the joint locally. However, it is known to degrade the joint and bone over time. Whenever you decide to get the recommended treatment, until then, limit your activities to avoid impact type of loading and heavy loading on the joint. No exercises on that joint unless given a green signal by a specialist. Removing the fluid from joint will provide temporary relief, but swelling could come back in a few days to a few hours (in my case it was a couple of days) - so probably best to go for what is potentially considered as a permanent treatment such as surgical removal. A diffused PVNS has a high recurrence rate - I do not want to scare you but I think it is important for you to find out which version of PVNS you have - diffused or localised.

      Wishing you luck with your treatment, and I am hoping that your diagnosis of a potential PVNS is untrue.

    • Oldfatguy1
      Oldfatguy1 krista5280

      Posted

      You didn't mention what type of doc and how much experience he/she has. I wasn't fortunate enough to have had any kind of swelling initially. One day My joint just "blew up". Within a matter of a few hours it was full of blood and 4-5" bigger in diameter than normal. The bleeding continued over a day or 2 until I was showing sign of blood back into my groin and lower abdomen. I went to ER and they had no clue and called my ortho who saw me the next morning. He was in a practice with 8 of this, 3 being sports med docs. Over 100 yrs experience and not a one had ever seen or treated a case. Eventually after thousands o dollars in tests and enduring 3 scopes to remove over 1000cc of blood I was sent to a ortho oncologist. In about 30 seconds the diagnosis was made. Unfortuantely I let my ortho recommend and I tried radiation. Burned the he'll out of my knee and I still had to have a synovectomy by one of the ortho oncologist. Eventually the pain required a tkr.

      This being said, I was well beyond the normal age of discovery for the disease. The most common ages range from mid teens to mid 40' s. I was 65. I still have a bit of the tumor in a nerve bundle and it can t be removed. It has come back to haunt me and I've had to have a number of surgeries. What I've found through my own research, there isn't anything normal about PVNS. I talked to an ortho at a children's hospital and he's seen it in a 9 year old and had to start doing multiple surges at 13 in a girl that had it jumping fro m joint to joint. This isn't a scare tactic but reality. My advice, if you can do it, get to an ortho oncologist as soon as possible and in a teaching hospital or major med center. Dont let some guy who is guessing and is using you as a guinea pig.

      BTW, you didn't mention where you are located. In in the middle of the US

  • 757gal
    757gal morphix

    Posted

    I had diffuse PVNS of the ankle. My initial injury was 28 years earlier.  I had a fracture of the Talus bone with an ill fitting ski boot.   The fracture was untreated then progressed to osteochondritis which then progressed to PVNS in 2013.  It took 2 surgeries to scrape and grind the aggressive tumor out of the bone, stem cells and cadaver bone to fill in the large Talus cavity that the tumor ate away and the third surgery cleaned up the scar tissue.   I just completed my 5th year MRI with no sign of a PVNS return.  My extreme gratitude goes to my awesome surgeon, Thomas Clanton, at the Steadman Clinic in Vail, Colorado.  
  • jeff1981
    jeff1981 morphix

    Posted

    I’m just wondering if my symptoms fall along with this disease about 6 months my knee just swelled up like a grapefruit. It wasn’t painful at first but it has gradually gotten worst the swelling goes down a little when I sleep but the second I start waking on it boom swelled again. The pain goes from stabbing to almost feeling like a toothache in your knee. My knee feels unstable at times then locks and all sort of other things. I have been to the orthopedic surgeon and he pretty much just scratches his head. I had around 160 cc of blood removed from my knee all which came back negative for an infection. I had a mri completed in October of 2017 where they said my effusion was from a bakers cyst that had ruptured but again I had none of the effects of a cyst rupture. My knee again swelled up huge to the point I couldn’t bend it. I just had another mri on 5 feb and my doctor refuses to call me to give me the results so I went to the hospital to get the results my self and this is what was on the report. 

    Within the large joint effusion and large bakers cyst there is interval increase in the amount of Hemosiderin staining which is seen predominantly in the peripheral components of the effusion specifically within the bakers cyst.. additionally there are multiple new areas of synovial proliferation with frond like projections. 

    This was the radiologist impression.

    Synovitis with intra articular capsular and diffuse bakers cyst Hemosiderin staining with out additional nodular components or erosions to definitively support pvns. Would support follow up imaging in 6 months since pvns remains on the differential.

    So here I am 6 months later not knowing still what the hell is going on with my knee. I just hope that maybe some of you on this forum have went through this and can point me in the right direction. I just want a diagnoses so I get start to get this fixed. Thanks in advance for anyone’s help on this. 

    • Oldfatguy1
      Oldfatguy1 jeff1981

      Posted

      Jeff, where are you located. If you are close to a teaching hospital I would suggest you get in touch with an ortho oncologist. PVNS has several directions it can take. Unfortunately, all are painful. I had 200 cc removed on 3 different occasions over a 7 week period and 5 more needle/syringe procedure of 65 to 75 cc. All of that from Oct thru the end of the year. Then came the big mistake, 30 rounds of radiation. Problem is, most Dr s haven't been exposed to PVNS and it can be seen on me I'd if they know what they are looking at. A biopsy is really the only sure way. Mine never have e me any trouble till the day it blew. Then the swelling (4" plus in 3 hrs) caused unbelievable pain. I was 65 when it hit me but the normal age is 16 to 42. Let us know where you are located and maybe the 4 or 5 us can refer you to an expert.

    • jeff1981
      jeff1981 Oldfatguy1

      Posted

      I am stationed in Washington st. Trying to get a second opinion or some one to really care is tough.  I just want to know what is wrong with my knee. 
    • Roach
      Roach jeff1981

      Posted

      Hi Jeff1981,

      Yep, diffuse pvns sounds like the culprit for sure. I had all of the same experiences as you, but luckily for me - as it was 1988 - I happened upon a orthopaedic surgeon who was doing specialist work on pvns cases.

      I was 24 1n 88, and the only treatment available back then was regular surgical stripping of the synovial lining. Initially via arthroscope, and the then - to be more thorough - it became open surgery, front and back. The recovery from the open surgeries was about 3-4 weeks, but it was much more effective in controlling pvns overgrowth.

      My pvns was extremely aggressive and I had 33-34 synovectomies over the journey. But from what I hear, in most cases it can be beaten in less than 10. I have a good friend in Perth who beat her pvns with about 8 surgeries (We met as we were both searching for info about pvns online)  Unfortunately for me, in frustration, I tried a cutting edge - back in 94 anyway - Yttrium radiation injection that didn't work. But It did cause premature morbidity of my knee cartilage though. Hence, with my active life, I wore the joint to oblivion by the time I was 50, so I had to have the whole joint excised & a distal femur prosthetic implanted. That's been a fantastic result & I'm back working & enjoying 90% of the lifestyle I want.

      So in summary, I'd seek out an orthopaedic surgeon who knows about this disease, undergo the stripping ops as & when required, and definitely don't let anyone convince you to have a Yttrium injection.

      Good luck Jeff1981

    • Oldfatguy1
      Oldfatguy1 jeff1981

      Posted

      Jeff. Wash U med center has a Tele med program. For $40 you can talk directly to a Dr a and get advice.(you're asking how a guy in Kansas City knows this. Our nephew is an infectious disease Dr and is in charge of the program.) I strongly suggest you talk to an ortho oncologist for the straight scoop but it sure sounds like PVNS. Obviousily It affects people differently but the freaking pain is common among everyone. You can PM or e mail if you need more info.

  • kelvin22676
    kelvin22676 morphix

    Posted

    Hello Morphix,

    I recently have been diagnosed with LPVNS in my knee and have been reading up on the different ways of treatment and was looking for more community answers than just medical journals and papers and then stumbled onto this forum. Anyway, so here are some answers to the questions that you posted at the end..

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

    No, I wasn't on any pain medication.

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

    My doctors dont think it resulted from injury, but maybe stress to my knee over time. They basically were inconclusive on what caused it. My knee did swell up a couple months ago, and it went down in a week or so. However what was left after that was this small growth that I think has grown just a bit more over the last few months.

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

    I'd say about 4 - 6 months since the swelling.

    Hope these help you in some way or another!

    I have some questions for you if you dont mind...

    1. Did you decide to surgically remove it arthroscopically?

    2. And if yes, did your doctor have worries that by doing so would create the risk of the PVNS tumour seeding in the surrounding tissue and thus creating a scenario where it becomes the diffuse form?

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