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PVNS: experience and causes

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?

292 Replies

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  • necessitea

    I'm actually in the US but there seems to be more cases in the UK. I found an excellent support group on Facebook called "PVNS is Pants".

    I was diagnosed with PVNS just last month and have surgery scheduled in 2 weeks for an arthroscopy of my right knee. This will be my first surgery to remove the diffused PVNS or as much as they can. I was told it will come back and was given a 10 year time frame before the next surgery will be needed. However, PVNS is very unpredictable.

    Some of us are finding that we share other strange ailments like cysts in our thyroids. Unexplainable sudden swelling or muscle tears is another strange commonality.

    There is speculation that PVNS can be triggered by an injury but no one really knows. There is no definite cause. There are people all over the world at many different age ranges from children to the age range of 40 to 50 who are the majority of those diagnosed.

    I have had strange knee issues since I was 16 and about 10 years ago I noticed a bump had formed on the lower left side of my right knee. But in the last year I've noticed I was becoming disabled. I turned 40 last month. But there are some who had surgery and within a year needed another surgery. Some last longer.

    So far I haven't heard of any medications found to be effective at slowing it down. The only thing that seems to help is radiation treatment, usually by injection and very painful.

    There are plenty of PVNS bloggers out there. PVNS is different for everyone. Some even have it in multiple joints!

    • Oldfatguy1 necessitea

      Sorry to hear another sufferer. I was at the other end of the age spectrum.......65. I have diffused left knee. At noon, 12 years ago this past Monday, 08 Sept, my knee was fine with no pain. By 3 p.m. the pain had exceeded kidney stone level and was swollen in the excess of 4". My dress slacks were tight around the knee area. Within hours you could see the bleeding going on extensively. I went to E.R and they contacted my ortho who had me come in before reg hours. 8 surgeons in the group and none knew what it was. Over the next 3 months I had surgery w/ general anathestic, each time 200 cc of mostly blood were removed, 6 Times the puncture and syringe method took 65-75cc each time. By late Dec, after seeing hematology a oncologist, rheumatologist, orthopedic oncologists and a couple of assorted guys that just wanted to tale a look, it was determined radiology would do the trick. By early Feb I completed 30 rounds of low level radiation....pain and low output bleeding continued. In Aug I submitted to a synovectomy at the local University medical hospital. The  ortho-oncologist said she couldn't get it all as it was involved fully in nerve clusters. One year, 3 months later good-by knee. TKR. Over the next 9 years I walked with a limp, medicated for pain and was generally miserable. Early 2012 The pain increased and evidence of PVNS began to show. Late summer the pain drove me back to the ortho/oncologist, she immediately got me to the knee/hip group. It was determined the PVNS was back and had eaten into the bone and caused the prosthesis to come loose and would require a revision (different brand of prosthesis). Mid Jan I had the surgery. The surgeon removed the old joint with his finger tips. It was completely loose and rotating in the socket. Unfortunately, I fell the day after the revision and twisted the femur into requiring an 18" plate and 8 screws to be inserted. Bone healed beautifully and in Oct they removed the plate........30 days later, staph infection. Reopen the knee, flush and replace the plastic disc. 9 months later, still fighting pain but ambulatory. Side note.....they still cannot get to all of the PVNS as there were traces in a nerve cluster in the bone. I'm now 77 and assume the crematorium will finally get that blasted tumor.

    • Oldfatguy1 sheila91498

      Its such a slow growing tumor it Just varies. Originally I had radiation, 9 months later the synovectomy then a year + the tkr. I wasn't noticeably bothered by it for years when suddenly the the pain hit and I found outfit had eaten around the stem of the prosthesis and it was loose. They have had to go back in twice because of staph and found bits of it here and there. I know I have some in the cluster of nerves that can't be reached as it might cost me the leg. If you Google pvns there a lot of case histories showing it can be in any joint and in multiple places at the same time. Very hard to advise you but can certainly appreciate your angish and concern. Its really difficult to discuss this intelligently with anyone except a special that understands it. I would would suggest an ortho oncologist if you can find one close to you

    • Oldfatguy1 sheila91498

      Problem is, so few know much about it. I go to a university medical school and they see everything. They have 2 ortho oncologists on staff. It sure helps to have good docs but it is still hard for even the good ones to get the disease under control as it seems to be the individual that controls the way it goes. One lady on her had 27 surgeries. I talked to a Dr at a children's hospital. He had a very young girl that has 13 surgeries before 16 and in several different joints. I guess we all start worrying every time we get another pain..

    • sheila91498 Oldfatguy1

      that is soo discouraging.  tell me again where you are located?  I may have to check into SLC Utah and see if the University of Utah has one on staff.  If I dont get answers soon I will make my own appointment, I dont think they get how painful it is.....

      Thanks

      Sheila

       

    • Oldfatguy1 sheila91498

      I'm in Kansas City and use the university of Kansas medical center.......I can assure you, unless you have it or are close to someone that does, there is no way they understand. I never knew it was there until it blew up and then the awful pain.........and bleeding. As I have mentioned, my wife is in advancing stages of Parkinson's. To people that just hear about it , its just another disease that causes tremors. They don't have any idea the horrible damage it causes to the body and mind. Her hell is a private hell that is slowly taking her life. Our hell is the pain that we live with and that nobody understands, they think its just like a severely bad joint and then start talking about their arthritis pain.

    • ashley12698 Oldfatguy1

      I was diagnosed with PVNS fall 2013 after a misdiagnosis of Rheumatoid Arthritis. I had my first surgery (arthroscopic) at the age of 16 on October 31, 2013 and the total synovectomy (8 inch incision on the back of my knee to remove my diffused PVNS) on February 3, 2014. I was told that since I have the diffused type that it could possibly return. December 2015 I started having knee pain again. Went to the doctor last Wednesday and he suspects the PVNS is returning. MRI this Wednesday to see just how much has returned.

    • Oldfatguy1 ashley12698

      Sorry to hear that you are going through it again. Its just a gift that keep n on giving. I was told early on radiation was the way to go but wish I had never had it as it really burned the tissue and made correct use of the leg almost impossibe. Good luck to you. Hope another surgery isnt necessary. Keep us informed

    • ashley12698 Oldfatguy1

      My doctor has offered radiation as a possible way to manage it but definitely isn't pushing it. The pain right now really is unbearable and I believe surgery might be my best option. That or amputation lol.

    • Oldfatguy1 ashley12698

      Where are you located and has your Dr seen a number of cases of pvns. Unfortunately, I was the 1st case my ortho group had ever seen and they were taking every basic step to get a proper diagnosis. Finally one of the Dr's contacted a med school ortho/oncologist. She was the one that eventually did my synovectomy. She did it arthoscopily but said it was the longest she had ever spent on one. It took her about an hour and half. Since then. I have had all my work done at the medical school

    • Oldfatguy1 ashley12698

      I'm in the Kansas City metro area. My surgeon is a teaching professor at the University of Kansas Med Center. He has seen over 2 dz cases. I was the oldest. Person he had seen with it. I was 65 when mine blew up. The usual theory is its a trauma that causes that to happen. The closest thing to trauma I had we s hitting a bucket of golf balls the night before. I know I still have 5hat tiny bit in a nerve bundle that can't be removed because of the danger of losing the leg. You have to just keep battling. It doesnt s÷m to get any easier but it does give me more stories to add to my still not yet started book.

    • breaun 57026 ashley12698

      Hi. What part of SC? I'm out in California but I'm moving to SC this summer. Just asking because I'm getting surgery this Tuesday and will find out more then, but if it's the kind of pvns that comes back then I may need a good Dr. Out there.

    • Oldfatguy1 breaun 57026

      You must be living a pure and holy life to get a relocation like that. My wife's nephew just got transferred from Utah to an AF base in SC and the absolutely have fallen in love with the area and people. Good luck with your surgery and move

    • breaun 57026 Oldfatguy1

      Hi there, thank you. I hope it all goes well too. My Dad, Sisters, aunt and a couple of uncles live out there. I used to live out there when I was in high school but when I turned 18 I moved back to California. Wish I would have just stayed out there. I have been talking with my Dad about it for awhile and he said to just come on out this Summer. It will be a better life for myou kids and myself. I would be living in Bluffton South Carolina.

    • Oldfatguy1 ashley12698

      You may have seen my story about visiting with the ortho at our very fine metro children's hospital. They had the little girl that had it moving around in her body and she started being operated on at 9 and had , I believe, 13 surgeries by age 16. It had affected her knees, one twice the other 3 , one ankle, one wrist, a shoulder twice, elbow twice..... Can't remember the rest but all were scopes. Then ibheard one case of a teenager that it had gotten into the jaw which just boggles your mind how anyone could stand that kind of pain. I keep wondering why there isnt some sort of research group with a fancy name looking into the disease. That way Some of us could sit on and advisory board and get to take long and expensive trips to scenic resort's while writing journals about the trials and tribulations of a rare an exotic disease. We could get large corporations and medical organizations to fund the thing and as I have a number of years in development work for a not for profit I could head up the fund raising. That would entail traveling 1st class to corporations world headquarters, staying in 5 star resorts, wining and dining the likes of Bill gates and Warren buffet to gain the backing of charitable foundations. At first meeting might have to be in lesser places like Bermuda or Jamaca but we could move up and out as funds became more available. Just a thought. We would really need a classy, easy to grab name for the organization. PVNS is too bland and pigmented villanodular synovitis is to difficult to verbilze. Well, maybe you an Breaun can work on that part of it while in start getting travel brochures to mull over.......how about a Mediterranean cruise for the 1st one. Surely Eli Lilly wouldnt mind picking up the tab for 2-300 long time suffers.

      The Prozac is starting to wear off....guess I better get back to bed.

    • Oldfatguy1 sheila91498

      Find a hospital with an ortho oncologist. 13 years..

      11 surgeries

      30 rounds of radiation

      Still have it because of location. Its in a nerve bundle and further work could cause loss of leg. few ortho surgeons and fewer pcp have seen it as its under 2 on a million.mine is difussed and bled profusely. 3 invasive surgeries in 3 months each removing 200 cc and 6 needle withdrawal in same time taking 65 to 75 cc we time. I'm in high level of pain round the clock k even though I have pretty good use of my leg except the fatigue and pain doesn't allow long term use. I was 65 w bhai n it hit me which actually means I was well beyond the upper limits age wise

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