PVNS: experience and causes

This is an interesting read for me. I have already had key hole surgery and i am currently awating to see the doc in 2 weeks time (appointment was booked 2 month ago) as the pain and everything else that comes with it is back!

I have never heard of this PVNS before but reading all the symptoms that people have stated it kinda sounds like this may be the cause of my problems.

Like others here, i am an active person, i play Rugby a lot and have done for 17 years, so as you could guess, my body has taken a battering! 

My symptoms are almost identicle to many peoples here, although i have not found any lumps at the back of my knee but i do have pain at the back of the knee (feels like i have pulled it if i straightne my leg) , my knee clicks and pops and hurts when i run or walk. I can still bend it but putting my socks on in a morning is a struggle lol.

I will most certianly be mentioning this to the doctor when my appointment day arrives! 

Hi everyone,

I was diagnosed when I was 15 years old and I am almost 24.

It has been a very long journey as you can guess with this and in my case its been with alot of pain while growing up. Like most of you it started with a previous injury.

I sprained my knee like a month before turning fifteen, while i was playing a game outside. A month or so later my knee started to swell exponentially. At first I thought it was just another injury but it soon started to affect my knee rotation and flexibility. Then my knee was so swollen i couldnt wear jeans anymore. When i was taken to the doctor they didnt know what it was and tried to drain my knee with a very large needle. It took almost 5 orthopedic doctors before I was recommended to see Dr. Wittig, who finally gave me my diagnoses of PVNS. The PVNS i had was from the front and the back of my knee. I was scheduled for two surgeries for front and back. May 2005 they had to open the front of my knee and take out the tumor ( i have like a 12 in. scar). After i was in the recovery room my doctor told me he took out almost 4 pounds of tumor from the front. Then i had to recover from the surgery and 6 weeks later they did the back of my knee.

I was in physical therapy a long time and then i had radiation to reduce the chances of it growing back. My knee never went back to normal, it stayed restricted and only bended at a 90 degree angle. I wasnt allowed to play sports or do any straining activity but i still danced and was in the marching band. I had an MRI every 3 months but i was never able to sit in the machine for long periods of time because my knee would not go straight so i was in a lot of pain during the scans.

I recurred my senior year of high school in 2008 right before going to college. They did am arthoscopic procedure of the top of my right knee and 6 weeks later opened the back of my knee.  After these two surgeries i rushed thru physical therapy bc my college was 8 hrs away and couldnt continue it there. I was left with a limp in my right knee.  I still tried to get an MRI every 3 months but it didnt last because they couldnt figure out how to keep my knee still. So after 2 years of not following up with the doctor I decided i wanted to start working out and to get in shape but of course after a few weeks my knee starts to give out on me and locking in to place. I was a senior in college and I had recurred again. When i went to see Dr.wittig, he didnt take my insurance anymore and wanted to do the surgery so he sent to one of his collegues at Mount Sinai. Dr. Iofin, the new doctor didnt want to do surgery on me bc of scar tissue damage but instead sent me to an orthopedic oncologist. The oncologist gave me an experimental drug that was supposed to kill the tumor cells from growing and it was used on leukemia patients. After a couple of months taking it, all the happened was a few side effects and the insurance wouldnt pay for it anymore. Then they gave me another drug that i only took for one month because of the insurance.

After the orthopedic oncologist ran out of ideas I was sent back to Dr. Iofin, who of course still didnt want to do the surgery to remove my tumor. He started to tell me that since im in pain that the best option would be amputation!!! After that appt. I decided to go to Memorial Sloan Kettering.

This is where everything changed. I met with some wonderful doctors who put me in a clinical trial for people who have PVNS and my tumor has now shrunk over -30% without surgery. I have more flexibilty in my knee now then when i saw 16. The only major side effect since im black is my pigment has gotten lighter. Another side effect i have had is fatigue and the most common side effect is that it changes your hair color.

I dont know if you guys would have the same reaction or if you want to find out about this with your doctors but the clinical trial is “A pilot study of PLX3397, a selective colony-stimulating factor 1 receptor (CSF1R) kinase inhibitor, in pigmented villonodular synovitis (PVNS)". I take 1000mg a day and its capsule of 200mg. The drug is PLX3397.

Doing a little follow up on my own situation, I came across your post. I can give you a bit of my 12 year history with PVNS. Incidentally, I live in the heart of the USofA. I have the diffused version and it didn't surface till age 65 when without incident the tumor broke and within 3 hrs. my leg was unbendable and pain levels were in the range of kidney stones.

My local orthopod was in practice with 8 others and none of them had ever seen the problem. I had 3 surgeries and 7 needle attempts to drain the knee. After 3 months someone decided it was PVNS and radiation would take care of the problem. 30 rounds of low grade radiation only took care of part of the bleeding and little of the pain. I then started the circuit of hemotology, orthopedic oncology, arthritis and then to the regional University Medical center. There a bright Ortho oncologist suggested and subsequently preformed an arthoscopic synoctomy but couldn't get it all due to sensitive location of tumor/nerve clusters. 14 months later I had a complete knee replacement and even with extensive physical therapy, never regained a pain free life. Go forward 9 years to the beginning of 2012. High levels of pain and swelling started to reoccur. I returned to the ortho/oncologist and was immediatedly referred to an Associate Professor-Orthopedics. X-Rays discovered the tumor had returned and the hardware was moving inside the bone and a knee revision would be mandatory. 2 weeks before my 76th birthday this was accomplished and again, the tumor inside the bone could not be completely removed as it was located on a nerve center and removal could possibly cause me the loss of limb. The rest of this has nothing to do with PVNS but can show you what happens when you personally screw up. Day after surgery I was feeling good and had been gotten out of be as is protocol. I decided to wash up and shave. during the process I tried to do more than I was capable of without assistance and fell, breaking my femur. Yes, in the bad leg. Next morning off to surgery where an 18" plate and 8 screws were plaed in the leg and knee. I was sent to a rehab facility for a month and then home and started physical therapy. By mid-year I was practice chipping golf balls in the back yard and pain was diminishing except in the knee where the skin rubbed the steel plate. Oct, 2013 the doc decided the leg had healed perfectly and the plate was unnecessary so it was removed. 30 days later I was taken to ER with high fever, nasuea and severe pain in the joint.................major staph infection...........emergency surgery, knee reopened and flushed, back to rehab for 3 weeks, a PICK line in place, antibiotic infusion 2x daily for 2 months and now heavy dosage of antibiotics daily the rest of my life. Again months of physical therapy but I'm walking without assistive devices and taking care of my wife who is deteriorating from Parkinson's Disease. I don't mean to imply that mine is the ordinary history one should expect but when you have to consider I was much older than the usual victim and have now been 12 years with the ailment, it's just another viewpoint..

My knee hurts bad they say I have chronic arthisit in my knee what can I do about it I'm in so much pain can't hardly walk nor bend my knee

Happy to find your discussion page, for I'm frustrated with having not found more information before having what feels like unneccesary surgery for PVNS (right knee), finding I did not have it, after-the-fact. I'd like to learn how others were diagnosed. My initial symptom -- effusion -- was sudden and acute. No trauma or event known to have injured it. The emergency room sent me home with a PVNS diagnosis based on MRI alone, with radiologist and on-call orthopedic surgeon confab. I went for a second opinion a week later (it was improving slowly) and this orthopedist concurred and scheduled surgery a few weeks after that (when he was to return from a vacation he was leaving on next day). By the day I had surgery I'd regained full function and comfort in the knee. He explained that the surgery was a synovectomy, arthroscopic, 45 minutes, 3 points of entry. Post-surgery he mentioned he'd found a small tear in my meniscus, which he cleaned up (the MRI showed my menisci to be intact and all other components of the joint in good condition).

My post-op was 10 days later. The doctor entered the room, acting rather sheepish and noticeably uncomfortable, having just read the pathology report and noting that I did not have PVNS. He seemed to be backpedaling and trying to make lemonade out of lemons by speculating that the blood causing the effusion probably came from the meniscus tear he repaired. I asked what the dofference between that blood is vs the blood in PVNS and he said cell structure is quite different. In ten minutes upon returning home, I discovered online info saying that such a diagnosis can't be made from MRI alone, and a biopsy is needed to confirm it. I'm 62, outside the typical age group for this, which should have raised a flag.

I challenged the surgeon on this during my next exam. He took the stance that "he had done a biopsy". When I asked, "When?", he claimed that the surgery was the biopsy -- a "partial synovectomy, removing the tissue that appeared affected". He'd never used the words "biopsy" or "partial synovectomy" prior to the procedure. I'm suspect of a biopsy requiring minimally invasive 45 minute surgery. Couldn't a biopsy of the tissue been done much less invasively/costly? Now, I'm having to go through the pain of recovery and rehab, and pay for something I'm unsure was needed.

Nice to find this forum. Wish I found it earlier.

I'm male, was diagnosed with PVNS in my knee when I was 24.

I started having difficulty fully flexing my knee and it just got worse and worse. After a while I was limping bad and went to the doctor. I did tons of tests and they just couldnt figure it out. 

Finally aftera  while, someone who knew what they were doing studied all the MRI, xray  and other tests I had done and figured it could be this super-rare "PVNS".

Fast forward I had surgery with arthroscopy. They removed a nasty, almost golfball-sized thing from there. 

1 year later with followup- xray and MRI and they saw something.

Again full surgery but turned out it was just scar-tissue that was bothering me.

My knee will probably never fully function again but it's way way better than I ever thought. I can almost run

Gonna have followup- annual  MRI's for 5-10 years.

Also, the theory of what causes PVNS, prior trauma is consistent with me.

I once fell really hard on that knee and once I lost a fight with a group and had a baseball bat to that knee.

Good luck to other sufferers out there!