My experience with Pigmented Villonodular Synovitis – PVNS

The Symptoms

It was late in 2012, I felt that my knee cap was moving out of place occasionally when I walked. This started happening frequently. One morning when I woke up I felt a sharp pain on my right knee just below the knee cap towards the left side. The pain subsided in about 10 minutes after a vigorous rub to the affected area. I walked normally that day. A couple days later, I was working in my office. When I got up from my chair, I felt a sharp and terrible pain on my right knee and it was as though my knee was giving away and my leg would collapse in the wrong direction. I rushed home and scheduled an appointment with the local doctor for the next day. I biked back home and walked to the clinic which was two streets away from home. I had pain all the while I walked and it turned unbearable on my way back. However, I was able to bike more than comfortably. When I was back home, I noticed that there was a huge swelling on top my right knee.

First visit to the doctor

I visited the doctor the next day. He performed some tests to diagnose the condition of my knee. He said my knee was stable,  but wasn’t sure what caused the pain and the swelling. He wanted me to wait for a couple of days to see if the swelling subsided. He also advised me to take pain killers if that helped reduce pain.

Second visit to the doctor

I visited the doctor again in a couple of days. In the meantime I researched online to find ways to reduce pain. I started applying ice packs and kept my leg raised over a pillow. The ice pack only stiffened my knee. I continued with it for a while to help any internal injury to heal. On my second visit, the doctor still wasn’t sure about the reason for the swelling and the pain. So he suggested I go for an X Ray and Ultrasound scan of the affected area.

After a wait of about a week, I had my X Ray and Ultrasound done. Five days later, I visited the doctor again to learn about the results.

Third visit to the doctor

Fortunately, the X Ray was normal and there was no damage to the bones. The Ultrasound said there was lot of fluid, but was inconclusive on the cause of pain. The doctor advised me to go for an MRI scan. I had to wait for about 2 weeks to get my MRI done.

First MRI Results

A week after the MRI, my doctor called me to discuss the MRI results. He told me that I had a rare disease called Pigmented Villonodular Synovitis (PVNS). He told me not to worry as the tumor was benign and not malignant and also it was localized and was not going to spread like cancer. He also suggested I go in for another MRI, this time with a contrast agent injected, so that he can confirm PVNS. He also fixed up an appointment with a Orthopedic specialist.

Second MRI Results and Ortho Visit

Ten days after my second MRI, I visited the specialist. He told me that PVNS was confirmed and it has to be treated with surgery. The size of the tumor was 9.4 x 15 x 17mm and it was present behind Hoffa’s fat pad. He also told me that the causes for the disease were unknown and hence no medication exists. He suggested I go in for an open synovectomy and advised that I do it as quickly as possible. This is what the second MRI report said

The mass in the joint of the dorsal fat pad of Hoffa shows hemosiderin artifacts and there is strong staining of the synovium of the knee. The image fits best with PVNS

MRI showing localized PVNS on right knee

MRI showing localized PVNS on right knee

I was living abroad and working on a contract. It was impossible for me to take a month off and go in for surgery. So, I decided to wait and review the condition after I return home.

Nine months later…

Nine months later, I returned to my home country and headed straight to hospital. I must mention that in these 9 months, I had no great pain but slight discomfort for a couple of times which lasted for about 4 – 5 days. The doctor had a look and ordered an MRI. The MRI report came in the same afternoon and the existence of the lesion and PVNS was confirmed. Luckily, it had not grown much and the size remained almost the same. The size mentioned in this MRI was 1.4 x 0.7 cm. The report said

Small circumscribed hypo-intense lesion interposed between Hoffa’s fat pad and femoral condyle – suggestive of localized nodular synovitis (localized pigmented villonodular synovitis)

With that, I was recommended to go in for surgery to remove the lesion. A couple of days later, I underwent an arthroscopic procedure to remove the lesion and was out of hospital in two days.

Post surgical recovery and biopsy

The removed lesion was sent for biopsy as I recovered from surgery. Right after the surgery, my leg was swollen just above the knee. I was prescribed pain killers, antibiotics, anti platelets and some vitamin tablets. I was also advised to apply ice pack every 3 hours. My knee was stiff and applying ice pack only increased the stiffness. I was also asked to do some exercises to improve muscle strength and improve circulation.

Ten days later, I had the stitches removed. My leg is a still stiff but I have regained about 50% of my normal action and I am able to climb stairs with both legs with some support. The swelling and stiffness still persist. Keeping the leg raised has helped reduce the swelling to a large extent.

Meanwhile, the biopsy report has come in.

Thin layer of synovial lining cells and underlying Stroma with diffuse fibrosis. Scattered pigmented macrophages are seen. Giant cells or foamy macrophages are not present

When I went in for review, a surgeon raised the specter of PVNS turning to cancer. The earlier diagnosis clearly said that was not the case. The absence of giant cells in the biopsy report is another positive point. I am waiting for some questions to be answered and am also seeking second opinion in this regard. I will post and update once I have a confirmation.

There is not a lot of online literature on PVNS, let alone localized PVNS. I hope this helps someone who is looking for information or someone who has gone through localized PVNS to provide me tips on what I should watch out for. If someone has had localized PVNS and got it treated, I would like to know if there was a recurrence and how you feel after the treatment.

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75 responses to “My experience with Pigmented Villonodular Synovitis – PVNS

  1. My husband was just diagnosed with PVNS- I would like to hear more about your journey.

  2. I am curious how you are doing now? Your case is very similar to mine. I just found out I have a 2 x 2 cm focal tumor they believe its benign but Im terrified its not. Part of mine is in the hoffas pad and right btw the joint. I cannot walk at all due to the location. Hoping to get into surgery asap-meeting with one surgeon wed. Did you see an oncologist?

    • Mine was behind the Hoffa’s pad so my pain was on and off every few weeks. I had arthroscopy done and the biopsy report said the tumour was benign. So, I did not visit an oncologist.

      It is almost two years now and my ortho said that there could be an early onset of arthritis but nothing to worry about the tumour coming back.

      Did you have a biopsy done before you go into surgery?

  3. I think I too may have pvns. I dropped my results and scans off to another orthopaedic surgeon. The first one believes that it could be sarcoma!

    Can I ask after the arthroscopy how long was recovery time ? I’m a very activate person and can’t continue my daily routine it’s driving me up the wall. Thanks for all the insight. Very helpful

    • It took me two weeks to walk without support and to about 45 days to run considering the fact that I didn’t put weight on my knee for about a year. Wishing you good luck and a speedy recovery!

      • Thank you for such a prompt reply. When you say you didn’t put weight on your knee for about a year, was that pre/post surgery? Did any of the doctors mention sarcoma to yourself? Thanks for all the insight!

        • I too would like to know as I’m a month post op and still can’t walk. Drs claim it’s because I lost all quad strength as I didn’t walk at all on my bad leg 4 wks befote

          • Lee did you not walk for the 4 weeks prior under the doctors instructions or because you were in too much pain? Thanks

            • I was in pain and if was at a perm bend as the lesion was right btw my joints. Now a month post op and my knee just buckles if I’m without support. If I walk w one crutch it swells immensely. Anyone else like me?

              • Lee I’m sorry to hear that, i hope you have a speedy recovery! What has your physio said about it? * Still waiting to hear back from another specialist about my knee, hopefully its not too bad! 😦 *

              • Try not to put too much weight on the operated knee until the surgery wounds heal. Once they heal, you can gradually start trying to walk with less support

          • Was your surgery arthroscopic or did they open up your knee? I was able to walk after two weeks without support. But running or walking fast was not possible. I had instability in my knee and popping sound for about 6 months until my quads were back to normal strength.

        • It was pre op. I felt that my knee was moving out of place while walking. This went on for about two months before I actually experienced the worst pain of my life one morning. Then on, my knee was swollen and the pain was on and off. The swelling went away after 3 weeks or so. So I barely put weight on that leg fearing that it will swell again. That resulted in losing all strength on my quads.

          No the doctors did not mention sarcoma. After two MRI sessions they told me it was PVNS.

          • I had arthoscopy -so still can’t walk but I literally did not use my bad leg at all for a month prior. I seethe surgeon this wk having a hard time believing this is still from quad loss. Though I know I’ve overdone it w pt too

            • If it is only a month you haven’t used your leg, then it is definitely strange. I didn’t use it for almost 9 months, but had no difficulty in walking after two weeks. And the swelling part is something I think you need to get checked. I never had swelling even though my knee was pretty stiff.

            • Wish you a speedy recovery. Take it slowly and it helps. I know the feeling of not able to walk freely or go about your daily routine.

            • I literally didn’t even put my foot on the ground for a month-was handicapped totally zero weight on it-you were like this 9 months? I’m seeing dr on Wed they seem to think its from total loss if quad and overdoing pt-I lost 1 inch off my quad and the entire muscle wasted-I agree a month seems odd. I can walk w one crutch but it does buckle and I can feel there is no strength. Think I injured it when the nerve block was in as my leg went flying bacl

              • I was definitely not like this. Never zero weight on my legs. Initially after the diagnosis, I was tentative and one of the specialists I consulted, even told me that, I am losing strength in my muscle. I never used my leg 100%, but it was never zero as well. I was always afraid to walk, but I was able to comfortably ride a bike to work – 15 mins one way. But again I never used my leg 100% even when riding the bike.

                My knee used to buckle post surgery as well. But it slowly went away once I walked with equal weight on both legs.

          • PVNS is now classified as a sarcoma. It can eat away at the bone if left in the joint and very very rarely, can spread to organs, especially the lungs.

  4. Thanks everyone for all the insight and sharing their experiences. I hope I hear back from the specialist sometime soon! Really what to know how bad it is and what the next course of action is. Good luck with the recovery Les!

  5. In the beginning of April 2015, I started experiencing severe pain and swelling in my right knee. I went to the hospital and the x-ray showed that my bones in my knee were all intacted. The hospital gave me a referral to see a orthopedic physician. After examining my knee the physician informed me that I had a bad knee sprain and requested that I see the physical therapist three times a week. I went to physical therapy for the entire month of April and my knee still didn’t feel any better. The pain was unbearable and my right knee was double the size of my left knee. I was sent for a MRI on May 5th. I was diagnosed with PVNS on May 18th. I went for a second opinion on May 28th and it was confirmed that I had PVNS and surgery was needed as soon as possible. My surgery was done on June 18th. Prior to the surgery the doctor told me that because of where the tumors were located that they would have to do both arthroscopic and open knee surgery. Altogether I had about 20 stitches. Within a couple of days I was able to walk a little without the use of my crutches. My stitches were taken out on June 29th. Currently I’m pretty much back to normal. I’m able to drive myself to physical therapy and anywhere else I need to go. My knee is still pretty swollen though and is very stiff. It honestly feels much better than it felt prior to surgery. Your stories were very informative to me, it’s good to know you have someone out there that can relate to what you’ve been through or what your going through.

    • Hello everyone. So my story is almost similar to everyone. I’m only 23yrs old and was just diagnosed with pvns in both of my knees. I use to have horrible pain after a car accident but thought it would go away. At one point my knees would get so swollen an I would have to get them drained every week. I eventually got Cortizone shots bc my op just thought I had synovitsis. I was taking Ibprofen everyday for work so the pain was bad but still bare able. So on June 19th I had arthroscopic surgery on my right knee an on June 26th had the same done on my left. Doc told me I had a large amount of synovial tissue in both knees but I should be okay an he’s gonna do a biopsy just to make sure everything okay. Last week he called an said I came back positive for pvns which is crazy to me bc they didn’t think that was going to be the case. An he told me not to worry which is impossible but I believe in 6 weeks I’m going to do another MRI to see if it is coming back. I’m 4 weeks post op on my right leg an 3 weeks on the left and defiantly say I’m doing better but there still is pain. I’m doing physical therapy and everything I can but defiantly still is pain. I basically just wanted to know how long before you stopped having pain I know it’s a little early but I’m just worried that the pvns is coming back. Another weird thing that is happening is my right knee cracks a lot when I bring it back in pt bc I’m trying to regain my rom. Op told me it’s normal but it literally sounds Crazyyyy. Not to much pain from the cracking but just pain overall. The most amount of pain I get is when I lock my leg while standing. I’m just trying to get everyone’s advice on this since I’m really new to all of it an should I not be so worried bc it’s only 4 weeks after surgery. Thank you so much everyone am looking forward to hearing from you guys

      • Hello there. Hope that you are doing better now. For me after the surgery, there was no pain. However, the popping sound lasted for about 8 months but with decreasing frequency. The cracking of the knee however, did not go away and I still have it even after 2 years.

        Ortho said it is because the gap between the top and bottom bones have reduced. I get pain when I strain them but not much otherwise.

        • So even after 2 years your knees don’t swell or haven’t had a reaccurnace with pvns? I’m 14 weeks post op an feeling better but defiantly have pain some days. I bet very nervous thinking maybe it’s the pvns coming back but my knees defiantly haven’t been swollen like they use to be. I just was wondering how long until you felt completely better from the surgery? I did loose a lot of leg muscles on the count of I delt with pain for over a year before finally doing surgery. Btw I still have the very loud cracking noises which is awful to hear my doctor can’t really explain why that noise is happening he just said to not bend my knee as much as possible which idk how is that possible lol. I hope everyone is doing well. God bless

          • It is a little over two years now. I never had swelling after surgery. Not even once. Pain and cracking are a different story however. I get some pain if I strain my knee or twist it accidentally. I also get pain if I carry heavy backpacks or luggage for a while. Cracking sound can still be heard but I do not have pain to go with the cracking sound.

            It took me almost 6 months to feel better after the surgery. I had also lost a lot of muscle. I could not even lift my leg if I sit on a chair. There is no way to not bend the knee. That is not possible but you can avoid putting on excess weight or pressure. But some weight and pressure is also required to regain muscle strength. Good luck with your recovery.

  6. I’m 4 days post-op with this condition. Had a 2cmx2cmx3cm tumor taken off of the Hoffa’s fat pad. I felt relief right away with the tumor gone but I can’t walk good or straighten the leg. I was coddling it for 4 months either being inactive or limping on the right side. I hope I’ll be able to go back to work in 10 days (I’m a professor). I also hope I can clothes shop, clean my house, and move my office. Today feels pretty bad, I have to keep it elevated or it really hurts but it’s only day 4. It’s very interesting to read all these stories because I am not sure what to expect as far as recovery. Did anyone else wake up from surgery with intense pain? It was radiating more out of my right hip then my right knee, and I could feel it from my hip joint, lower back, through my knee to the arch of my foot, and even up my neck and eye socket/molars ached, it was a horrible pain that lasted about 40 min. after waking from surgery. I needed an extra large dose of pain medication to bring it under control. Nothing has hurt as much since that.

    • Post-op I did not have much pain at all. What you describe is pretty strange. Did you consult your doctor to know the reason behind the pain?

      Straightening the leg or walking good was a problem. It took me 6 months to walk without the occasional imbalance and the popping to go away.

      Have you returned back to your regular routine?

  7. Now I’m about 6 weeks post op, I never did figure out where the pain came from, right after I made that post I started having widespread pain in all my joints nightly for about two weeks, they were considering blood tests but now it’s gone. I can straighten the leg now (took a few weeks), and I can almost sit on my knees and bend it all the way, not quite. It pops more frequently then the other knee and is a little weaker and tender but overall it’s so awesome to WALK FAST and WALK MY DOG and be able to get in and out of the car, up and down off the floor etc. I was able to get back to work in time although I had to take it easy and couldn’t accomplish all the things I’d hoped. My office and house is still a wreck because of just not having strength or energy to do more than the high priority items in my day (which are not self care and cleaning, unfortunately). Although with each day I’m gaining stamina and it’s been amazing to be able to do small workouts. I can finally forget I had the surgery for short periods of time, and I noticed without thinking about it one day that I was resting the other leg with all my weight on the bad leg. That was a huge milestone to not constantly protect and baby it all the time out of habit. I’m still wearing my post surgical stocking like a security blanket, but most of the swelling is gone. It’s amazing to look at my legs and see two knees that are the same shape (almost) again, and see a defined knee cap, it looked like a big knot in a tree for a long time.

    • That is awesome to hear. I’m praying that my Knees do get a little better as well since I’m only 3 months post op. It’s been really difficult for me be I come from a very athletic background but doctor told me to cut the sports out so I don’t injure myself. I’m okay with that as long as I can go everyday without pain. As for recovery I’m defiantly doing better after the surgery then before but was hoping to have zero pain but that’s not the case. It gives me a little hope that your saying it took you 6 months to feel no pain bala bc some days I’m fine an some days will hurt me more then usual if I had a busy day at work (waiter) or I’m standing around a lot. Only time could tell I guess I just worry what the future is going to hold since I’m only 24. I hope everyone is doing well. God bless

  8. Thank you all for sharing your stories, my nerves are getting the best of me since I recently found out I have diffuse PVNS (we think). I have read through everybody’s stories looking for some insight. I go in for surgery the day after tomorrow (Nov 4th) and as many of you can probably relate, I am quite nervous about it. Since I have found some solace in everyone else’s story, I suppose I will pay it forward by documenting my own experience here. This will help me, and hopefully the next person. My right knee has bothered me since last May but I continued to ignore it. I am very active and have a job requiring heavy use of my body. I have experienced minor pain here and there but nothing that wanted to make me stop and run to the doctor…but that’s probably because I make a habit of avoiding doctors and hospitals in general anyway. The thing that finally became intolerable was not being able to bend my knee for more than 60 seconds while sleeping without it hurting to the point it would wake me up. The lump has grown under the fat pad and is jutting out to the right pushing my knee cap to the left. I can still walk fine with no problems, but if I bump it even to the slightest degree, the pain actually takes my breath away. I think the only other thing to probably mention for the next person is I am 39 years old and experienced only light trauma to this knee in the past. I am curious if anyone else had trauma to their affected joint or if the pvns onset suddenly with no theories to why. I would appreciate any comments if anyone has time. And if no one minds, I will be adding us all to the “full recovery” prayer I am sure I will be saying here shortly…

    • Hey Keith good lucks with your surgery your going to do great! I to was nervous before surgery it’s completely normal and I didn’t even know I have pvns before surgery lol. My story is similar to you I had knee pain for actually a few years. Like you said very light pain nothing where I thought I needed to see a doctor. I was still active in sports and weight training. But I got into a car accident and it all changed after that. I don’t know if my knees became worse over time or from the accident all I know is the pain was the worst pain I’ve ever experienced. My knees where literally balloons and I was getting them drained every week for 5 weeks straight. For 2 weeks in a row they drained 110ccs of fluid from each knee the average knee has about 5ccs. So I did the surgery in June and in 2 weeks I’ll be hitting my 5 month mark. I’m not gonna say I’m 100 percent but defiantly doing better then before the surgery. Some days are worse then others but I’m truly happy I did the surgery and I’m just praying that I’m in the 50 percent that doesn’t reoccur and I’m still focusing on slowly strengthening all my muscles. Good luck with your surgery your gonna do great and God bless. Please let us know what happens

      • Fadi – good to know you are doing better after 5 months. How are you doing with rebuilding the muscles? Does your knee give in when you walk or are you able to walk comfortably? Do you still have cracking noise or popping?

        Hope you recover fully and get back to living a normal life.

    • Hello Keith, not sure if you will read this before going into surgery. Good luck with the surgery.

      Answering your question, I do not remember of any trauma to my affected knee. It was sudden and shocking if I may say so. None of the specialists I met could tell the reason for onset.

      • Yes doing better thank god. Still do have pain but not like before. Yes my knee does pop here and there and for some reason if I bring one of my knees back it makes a awful crunching noise. Only one knee does it but it comes with no pain just the noise isn’t fun to hear. I’m actually still working on building my leg muscles bc I’m just going at a slow pace don’t wanna over work my knees. I wanna take steps forward and no steps back lol. To be honest my knees have never just given out on me but before surgery it was painful just to walk that has defiantly gotten better after surgery as well. No running or jogging yet tho don’t no when or if I will ever be able to do thay

        • Good luck with your recovery. Good to know that you are making progress with building muscles. Yes, I have the occasional pop too, but as you said, the cracking noise is something that is not fun. You should be able to start running or jogging, but have to go slow with it and can definitely improve once your muscles regain their strength.

    • Thank you again everyone for sharing your stories. I apologize for not adding my success for the next person to look forward to sooner so allow me to share now. Recovery was a little slower than expected where I struggled mostly with stiffness I would say for about 5 months. I also continued to experience pain in my knee when I would bend it (which was what led me to going to the doctor in the first place.) this lasted up to about the 6 month mark. I can say now I am back to where I was before this whole thing happened. I am working out really hard, hiking, skiing and doing all the things I love and able to keep up with my kids. The only residual effect I can share is every once in a while I will get some mild tendonitis in the muscle connecting to the patellar. But its such a non issue its almost not worth mentioning. If you are looking at having to go through this, good luck and stay focused on the end game. It sucks for a while but if you work at it, you can get that knee back the way you want it.

  9. I have just been diagnosed with PVNS in my right knee. I am 39 and have four kids. I have had a knee injury since 2009 – partial dislocation at work and crushing the cartilage. I have had synvisc injections every 9-12 months since. The injections meant I was pretty much pain free for about 9 months. I developed a localised reaction to my second last synvisc injection and my knee blew up to double the size, requiring cortisone to settle it – this took about three weeks to settle. I was then pain free for about 10 months. My last injection being in October last year – I also had a reaction to that one but not as severe. This injection seemed to have not been effective like the previous ones. My knee felt unstable and painful and I could feel something moving under and to the left of my kneecap. I have limited movement in it. My surgeon sent me for another MRI and discovered the PVNS. I can feel it sitting just under the kneecap and jutting out to the left. I’ve been told I need open surgery (5-6cm incision on side of knee) as soon as I have approval from my work insurer. I’m also concerned about the recovery time and time off work. I am a reasonably active person with kids that need me to drive them around etc. It’s hard to keep up any exercise with my knee the way it is at the moment. I have an active job and am only just maintaining that. Following the treatment of the PVNS I also need an osteotomy to treat the arthritis caused by the initial injury. Feeling like I have a long(ish) road ahead!

    • God bless you and good luck. I’m have pvns in both knees and I’m only 24. I have had 2 keyhole authored around 6 months ago and I am doing so much bette. Don’t get me wrong I am still not 100 percent and I do have my bad days but not nearly as bad as it use to be. I know open surgery tho does take around a full year to recover and I was a very athletic person. I haven’t played any sports or run or really do anything but bike. It sucks but it’s okay as long as I don’t have to go through the pain I went through it was awful. Good luck and if you have any questions don’t hesitate to ask. God bless!

      • 24!! That’s not good. Sorry to hear that. Thank you for your kind words. I hope you’re 100% very soon!! There are a lot worse things I could have been diagnosed with I guess…it’s just a matter of adjustment and getting on with it 😊

        • Yea your aboustly right about that! Thank you hopefully one day I can go back to doing squats and playing football. Good luck with your surgery and recover!

          • I have arthroscopic surgery for my left knee because I have pvns. I did the surgery since four months but still have pain , before one month I went to dr. He told me that I didn’t walk enough and I didn’t do the exercise well I told him I can’t walk because I have click in my knee with sound and it’s painful this stop me and prevent me from walk because I feel something block the knee .. he asked me to walk even with pain I walked but till now I can’t go upstairs and can’t depend on my left knee i did the exercise but in vain can any one help me and show me what to do please …

            • Hey nisreen I’m sorry that you had to go through that surgery like everyone else did. I know it’s not easy especially bc I had to do back to back surgerys on the count of I had pvns in both knees. There can be a few things going on with you. Your doctor isn’t lying actually moving through the pain after surgery is essential bc you can Develop and a lot of scar tissue. And with that scar tissue it can actually cause pain,restriction. Now I can’t say that’s what is 100 percent but that’s what it sounds like. Have you been doing physical therapy and actually trying to restore range of motion and strength. What helped me tremendously was I use to ice my knee a lot to help with inflammation. Ice needs to be your best friend. Bc after you try to push your knee back or try to break up some scar tissue your knee is going to get swollen and that’s normal. Just keep icing and keep working on it. Another thing that helped me a lot was warm Epsom salt baths. I would slowly try to pull my knee back as well while I’m in the tub. A little pain is okay but don’t overdo it and push beyond your limits. Another thing you should try doing is foam rolling your quads/hamstrings/calfs and try stretching as much possible I’m truly sorry that your still going through pain bc I don’t wish that upon anyone. I say you try all this things for the next month and if you don’t see any improvement demand to recieve another Mri. God forbid it could be more pvns bc there is a 50% reoccurcance rate but idk if that is the case. Once again I’m not a doctor I just went through the same journey as you and these things helped me. I’m not 100 percent but I 1000% percent have a better quality of life after my surgery. Good luck to you and I will pray for you to be better. God bless!

              • Thanks a lot I forget to tell you that I pens in both knees but the doctor told me the right knee doesn’t need surgery now and he did arthroscopic for left knee . now when I want to walk for half an hour it’s good for the left knee but it’s bad for the right knee because it’s need a rest that’s why I can’t walk for along time , now it’s winter ice bag cause pain but I feel relax with warm oregards little hot water so should I add salt to the water , is that what you mean ? Thanks a lot for your help .

        • I hope you and Fadi are doing better! Any updates? I am so happy to report I am back to my old self and even getting stronger. I sincerely hope you can share a similar story!

    • Good luck with your surgery and the recovery. The doctors could not decide whether to go arthro or open knee in my case but finally decided on Arthroscopy.

  10. We are just entering the PVNS journey with our 6 year old daughter. I wonder if she is the youngest ever to have it. She currently has no pain or restriction in movement. But there is a lot of swelling in three different areas of her right knee and thigh. The mass first presented in her thigh, then spread to swelling in the knee. The cyst presented on the MRI 10 cm x 3 x 2 approximately. That seems rather large compared to others. Her surgery is scheduled for Feb. 19, 2016. They are doing arthroscopic surgery, but said they may have to open her leg. Poor little girl. It will be hard to see her go through that. She is so full of energy. I’m sure she will recover quickly.

    • Sorry to hear that. When I did my initial research, most people with PVNS were late into their teens or young adults. Did your daughter get injured in her knee sometime in the past? Also, the size seems pretty large as you have stated and I am surprised that there is no pain with such a big mass.

      If possible, please ask the doctors to decide on the open knee or arthroscopy earlier on and finalize their decision. First arthroscopy and then open surgery is a bit too much to handle even for adults. The doctors in my case were deciding until the last moment, kept changing their decision every 30 mins and it was maddening.

      Good luck with her surgery and recovery.

    • Hello, I’m so sorry to hear about your daughter being so young with PVNS. I have diffuse type rt knee PVNS of the synovium and also the tendon sheath. The mass in my muscle and tendon was larger like your daughter’s. It was 10x4x3. I wanted to let you and others here know there is a really great closed support group located on Facebook called PVNS is Pants. You can search and request an add from the moderator. I’ve been struggling for a while and I’ve found lots of answers to questions and the size and support of the group is really quite helpful. Take care!

  11. Hello everyone,
    I was diagnosed with PVNS in my left ankle about 6 yrs ago. I’m a 65 yrs old male. I initially twisted my ankle about 25 yrs ago and thought nothing of it. My ankle remained swollen, so after a few years I went to my family doctor and he said that I had fluid on my ankle and he suggested draining it. Being the coward I am I declined his offer and decided to let it be. Over the years I dealt with the pain taking 9 to 12 ibuprofen daily until I saw an orthopedic doctor. The first visit with the orth dr made me question why I saw him in the first place. After an x-ray he told me I had a tumor and to get a MRI. After the second visit with the MRI he now said I have gout and to get a blood work up. After third visit he told me I didn’t have gout but he was making me a custom leather and plastic brace to wear. Since my insurance was paying for the brace I had it made with the instruction to come back in a month. I never went back.
    Another year or more went by before I saw another orthopedic doctor and another and another. Recommendation went from radiation to amputation. The present orthopedic doctor I am seeing had me enroll in a promising clinical trial for PVNS. I entered the program and it lasted approximately 11 months with MRI’s every 8 weeks. The outcome was that the PVNS had continued to grow and that given the side effects of the drug it was no longer beneficial for me to remain in the study.
    Since leaving the clinical trial I’ve gone back to my orthopedic doctor who sent me to another orthopedic doctor to discuss what comes next. The recommendation is to remove as much of the tumor as possible, fuse the bones in the foot and do a total ankle replacement.
    I have many reservations about this course of treatment. So for now I am dealing with the pain and worrying about what comes next. Does the possibility exist that my tumor turns malignant, yes it’s a possibility. Should I have my foot amputated ? Recovery would probably be shorted the ankle replacement. Or should I just go on dealing with the pain? For now,dealing with the pain is my drug of choice.

    • Russ,

      My name is Carson Wooten. I am conducting a research study on PVNS/GCT-TS. I am interested in gaining your perspective as a patient. If you are interested in participating please contact me at carson.wooten@navigant.com. I will provide more information upon contact. I look forward to hearing from you.

      Best,
      Carson Wooten

  12. Concerned mama

    Hi all!!

    I’m a mom of a 17 year old that has just been dx with PVNS in her right elbow. Her story is a little crazy and I’m pretty anxious.

    My beautiful, active daughter woke up about 4 years ago complaining that she couldn’t straighten her right elbow all the way. No pain just stiff. She had a check up and her peditrician sent her to a local ortho dr. He told us that she most likely had broke her elbow when she was small (between ages of 2 and 3)and it never healed correctly. I never believed it. I think we would’ve known if she had broken her elbow.

    A year and half later I noticed that while she was dancing hula (she has danced for many years) her elbow seemed to be even less straight and “contracting” more. We went back to the original ortho dr.

    He confirmed that it was getting worse. She had an MRI shortly after. The MRI revealed that she had a torn ucl. Her ortho dr said sorry he had missed diagnosed her and sent us on to a specialist. Long story short, the MRI was misread. (All this time she has NEVER had an injury to her elbow). The specialist at UCSF (we live in northern CA) said she believed my daughter didn’t have a torn ucl and showed us the misread on the MRI images. She instead thought my daughter had RA and sent us on to a rheumatologist.

    Last year, June 2015 my daughter saw a rheumatologist thru sutter. He wasn’t a peds dr and suggested we be seen at Stanford. He said my daughter undoubtedly had RA.

    In July we were seen at Stanford. They confirmed his dx and booked her out for a 6 month follow up. Durning that 6 months I had the original misread MRI sent to her new Dr. Her new rheumatologist said the MRI is not conclusive and she needed another. We tried to book but our stupid insurance declined since she had one worhin the last year. Her original one was done without contrast.

    In January after switching insurance companies she had new MRI with contrast. Her rheumatologist contacted us and said the radiologists were all a bit confused and it remained a mystery as to what was really going on. She said that they could see lots of damage and that it looked like she was injury her tendons repeatedly. She asked us to come in and the radiologist herself wanted to do an ultrasound. Ultrasound was done and dr’s still puzzled. They decided to do a biopsy.

    Biopsy was scheduled for last Monday and canceled as we were driving to stanford (about a 2 hour drive for us but well worth it). The radiologist that was to perform the biopsy saw the mass and contacted an orthopedic oncologist.

    We have now been told that they believe it’s PVNS. we can’t get in to see the dr until 4/21. His office called us and told me that she is on his radar and his plan is to remove it (some type of open biopsy surgery). Said no need to put her thru a biopsy ahead of time because they believe that’s what it is. Will biopsy at time of sugery.

    My daughter is a straight A student. Very VERY busy. Class president, runs cross country and track, dances hula and takes 8 classes. She has huge dreams. I’m sacred this will get in her way.

    She can’t stand to miss school and wants the surgery scheduled after school is out this summer. She is a junior in high school. She has also been accepted into a summer program at Brown for biomedical.

    Help! Anyone else have a similar story? There is so little out there on this disease. Anyone with an elbow PVNS??

    My poor girl has also been having hip issues in her left hip. She is taking a break from running and dancing. She hates it. Can it be related???

    Thanks for reading. I’m new to all this. Please advise

    Concerned mama!

    • Hello,

      My name is Carson Wooten. I am conducting a research study on PVNS/GCT-TS. If your daughter is interested in participating please contact me at carson.wooten@navigant.com. I will provide more information upon contact.

      Thank you,
      Carson Wooten

    • I’m so so sorry I was 22 when dignosed with pvns in both needs. I’m not a doctor but surgery helped me 100000 percent and I was so worried to have surgery at first. After a year I decided to and it has helped me out a ton but I will pray for your daughter bc I know how hard it could be. I had trouble walking for 2 years and I was very athletic. This disease changed my life but I will always have a smile on my face and it will never beat me. Good luck and God bless

  13. I just got diagnosed like an hour ago. Told me I have PVNS (which I’ve had pain for 3 years with) and I can’t do anything about it. That was the end of my appointment. What do I do?

    • Find a new doctor! Not to sound harsh but if there telling you there’s nothing to do its bc there not that knowledgeable about this rare disease. If it’s something that’s been bothering you for 3 years then you’ll prob need surgery like I did. I had surgery about a year ago and I’m not a 100% nor think I ever will be but I am truly blessed to be doing so much better. Good luck and God bless

    • I am surprised as well. Did you have a prior MRI or something or it was diagnosed as PVNS in your first appointment? You can surely do something about it . As Fadi, said, you should get a new doctor. It is already bad that you had to live with it for 3 years. It is not a common disease and many doctors have no idea of what it is including the one I visited post op – for a different reason

  14. I am going in for pvns surgery Friday. My mass is 5cmx1.5cm. My ortho thinks he can do it Arthroscopicly. It really doesn’t bother me unless I am working(I’m a Waitress). Other than something moving under my knee. I’m concerned about the reovery time. Reading everyones story about weeks or months of recovery I’m nervous. I was thinking I would be good to go at most within 10 days. Also it seems my mass is big but didn’t bother me as much as some people. Should I prepare myself for a longer recovery?

    • Hello Kara, I had this surgery last year for a similar size mass. One thing that led to a really long recovery for me is that I let things go for so long. There was much pain and swelling after surgery, my doctor used a scope but he ended up making two small x shaped incisions as well. The pain and swelling from surgery went away in the first few weeks. What I found as many patients describe is that by waiting so long and favoring my leg for many months, my entire body was weak, stiff and out of shape. The main part of my physical therapy focused on strenghtening my right hand side and getting my knee to bend and straighten all the way again. I was able to regain full range of motion by around 90 days by diligently doing my therapy exercises. I could still tell my leg had the surgery and still couldn’t do as much as I used to. Now at the 9 month point my leg doesn’t feel like I had surgery at all and I’m back to doing all my normal exercises just fine. My only worry for you is that I used to waitress and I myself teach, I was 37 but a young and healthy adult not overweight. I’m not sure I could have taken waitressing for a month or two. Getting out of my chair to teach was a challenge and I babied the leg and rolled in chairs a lot the first two months. Wish you the best, if I had it to do again, I would get the surgery sooner rather than later because when it swells so large or gets pinched somewhere in your knee the pain and swelling is awful. I let it get to the point that I could no longer use the leg and was in constant pain. Don’t wait that long and your recovery will be better, I hope.

      • Can I ask you please how much time and exercise do I need to walk normally and use stairs because I did arthroscopic for PVNS since four month till now I have pain when I do exercises and I walk slowly and I can’t use stairs

        • Something doesn’t seem right if it’s taking you that long and not seeing any improvements. I would contact your doctor. I know it sucks to use ice in the winter but it is still necessary. And when I say salt I mean Epsom salt you can buy from most stores

    • Hey I had double knee surgery with arthroscopic and I took 4 weeks off of each knee. Lemmi tell you tho I’m as well a server and it was tough in the beginning bc after long shifts my knee would kill me. My advise just don’t rush anything and you’ll be fine. Good luck and God bless

    • Hi Kara, how did your surgery go and how are you doing now?

  15. Hi! Thank you all for sharing your stories and comments. I have just been diagnosed with PVNS. This is very scary and I’m glad I found other people who can relate. Is there anyone else in the Toronto Area? I’m trying to find an Ortho Specialist who treats PVNS. Any help would be greatly appreciated. Good luck on all your recoveries.

  16. Cheryl Terpening

    Cher
    I was diagnosed with diffused PVNS in my right knee in March 2016. I am 4 weeks post -op and still having swelling and pain. Sharp hot poker kind of pain. I had this before the surgery and I had expected that to stop, it did for a while, but the pain has started back within the last week. The surgeon made 6 arthroscopic incisions to remove all the tumors. Have been doing physical therapy 3 time/week and pool therapy every other day. The pool therapy is very helpful, although I over did it because it was so much easier to move my knee in water, I now take it very slow and just relax in the water and enjoy the lack of pain. Otherwise I have pain all of the time, plus now the hot poker pain that seems to come and go for no reason at all. Has anyone else experienced that type of pain after surgery? Plus numbness in the front part of the knee. My PT is concerned with the swelling. Anyone have any good suggestions on reducing the swelling? I follow up with my surgeon tomorrow and I am anxious to hear what he has to say. Sending good vibes to all of us very special people with this rare condition.

    • Pain and swelling 4 weeks post op is indeed strange. For me, the swelling and the stiffness lasted about a week and then not much unless I stress my knee too much. Just to mention, mine was localized PVNS and had two incisions made to remove it.

      For the swelling and pain, did you try hot or cold packs? I prefer the hot pack personally though, it helps with the blood flow. Do you also have instability of the knee, like the knee trying to bend in the opposite direction when walking?

      Good luck for your visit to the surgeon tomorrow and your recovery

  17. Dear all fellow PVNS patients,

    I went through surgery in my left foot last year for the difuse variant . The doctors failed to remove all of the synovitis, so I might have to do another operation. In that case, I would like to be operated by a doctor who is specialized with in this disease. Does anybody know of such a specialist? Appreciate all feedback.

    Thank you.

    Sebastian

  18. Im a college football player who suffered from pvns in my left knee. I had to get surgery for it back in 2015 summer right before playing at North Carolina Wesleyan College. I went through physical therapy and lots if athletic training at my college. My knee was stiff and i played well during the season with a weak knee plus scar tissue. Sadly few months later after i transfered from the school,it came back. It was cracking everytime i do a hamstring curl or kick my knee back real fast. I got a cortizone shot and the doctor said itll bring the inflammation down. So now im planning to play ball at a Division 2 program and fight this pvns. GOOD THING is that the 100% Pure Essential oil Frankincense Boswellia carterii i used has help immediately with fighting the inflammation and hopefully bringing the cyst down. I also take glucosamine, chondroitin, msm, and hyaluronic acid all in a pill plus tumeric to help fight this. Plus lots and lots of stretching and foam rolling my knee to fight the stiffness. I will definitely make a video soon. To show and tell everyone the progress. There is hope. Dont give up and trust in God.

    • I take the same supplements! I also am worried about a recurrence because mine pops a lot and I can feel a vague bump on the BACK of my knee. Anyhow, best wishes and I look forward to your video.

    • Hey Tyrone I love how determined you are my brother. Seriously man this was nice reading it was very inspirational. I was in the same boat as you I was very athletic and into football basketball and also weight training. I had to get double knee surgery after I was dignosed with pvns. I’ve never heard of that oil but I’ll defiantly be looking into it. I couldn’t agree more with foam rolling and stretching that has helped me out tremendously and I try to explain to people all the time it helps a lot. Just wanted to say good luck on your journey man your destined to do great things just keep your head up high and stay positive just how your already doing. Who knows maybe you’ll defeat the odds and make it to the nfl one day. Good luck and God bless my brother. P.s I would love to see that video!

      • Hi all I had arthrotomy surgery (6cm incision one side keyhole the other) for a left knee tumour behind the knee cap 2 weeks ago suspected to be a chondroma.

        I recently found out it was actually two tumours and they are PVNS tumours, well most likely but had some suspicious characteristics and have been sent for FISH testing which is a bit scary.

        Questions:

        Anyone had theirs sent on for further genetic testing?
        Anyone have nerve damage done during surgery? I have no feeling between my knee and ankle on the inside of my leg?

  19. Hello,

    I am wondering if anyone could refer me to their surgeons and where they are located. I was diagnosed in Nov. 2016 and have 4 tumors located all around my left knee, they are bigger than the size of a golf ball. Unfortunately there are only 2 surgeons who specialize in this surgery in S. California and I have been waiting for Surgery for months. I’m in an immense amount of pain and can no longer move my leg.

  20. Anyone have Pvns in ankle I scope done a year ago but it seems to be coming back. Recovery took about 8 months to feel like I could walk comfortably and chirp and physio did not help very much. Matrix repaterning was the only thing that gave me close to full motion back as it was fused.

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