Pvns is rare. About 2 per million per year. Treatment is to remove aa much of the synovium as possible and then to use radiation. Diagnosis is difficult. Mri is the only useful imaging method. Aspiration of the joint is bloody. A sample to the lab for cytology is advised for a bloody aspirate. The most common joint affected is the knee.

I'm one week post-op on a Birmingham hip. It's true your body feels very different after something like that has been put inside. I'm 42. Sometimes you just got to do these things and don't worry about the revisions down the line I always think you can just die any moment. The recovery is brutal by the way Awesome attitude your videos are very good and informative

Being young it must have been easier for u then a 70 year old.

I have heavy pain what yo do

I'm 45 and my Dr recently told me I need a hip replacement. I keep hearing all these negative stories and being told I should wait due to the risks of blood clots etc but it's basically bone on bone now & the pain is causing me to reconsider a lot of activities I enjoy like long walks/hiking, and being on my feet long hours. I'm on a waiting list for 5 months so will be using that time to make sure it's the right decision.

Maybe you get stares because you are so good looking? Really. You are beautiful and full of life. I would look at you. You are pretty enough for 50 scars. I do hate young people having hip problems. It is so unfair, I know that sounds ridiculous but you should be enjoying life, not having so much pain and suffering. When you are older it is not as bad, you slow down anyway. I had THR yesterday and came across your video and it helped me very much. But I am older and just hate it that this happened to you and the other young people commenting.

Hello sis I have pvns too but I still have a pain even after my knee injection

I just today received the letter which states that I have a suspected villonodular synovialitis in my knee. They suggest surgery and histopathology to confirm or falsify it. So I am researchi g this now and found your blog. I seem to be an archive of rare diseases, so one more does not phase me. Only that it needs yet another surgery is concerning to me since it will be surgery number 20 for me (not counting the two muscle biopsies for myositis diagnosis) . And no guarantee it will be the last. So thanks for chronicling your journey and being open about everything.

I have PVNS. Doctor find it last week and my foot pain is like hell. I cannot walking normal and I need pain. They wanted open it and watching how bad is it. I m afraid a lot. I get 2007 psoriasis and now this. I m very tired to been all time sick but I trying been positive person. I don't been this moment work but I hope I can return there in the future. I just want this pain stop and all get out my foot. I m now 35 years old. :(

You are very brave. Good luck with your life.

Hi Belinda, Thanks for your video, I have always found it hard to find any info on PVNS, particularly personal experiences. I am also one of the other '50 Aussies' who suffers from this disease. I just had orthopaedic surgery on my right knee less than a week ago in Melbourne, the pain you experience after surgery is something else! I'm glad to hear that you could eventually eradicate it permanently. 🙃 Cheers.

SUBS FOR INTERNATIONAL VIEWERS. Copy them And translate them into your language !!!!!!!!!!!! hey guys so this video I am going to chat about the hip replacement I had and the eradication of pianist what I did is I actually found an old vlog of mine that I had written and it's pretty much self-explanatory and I think it'll keep me on track and to the point and waste your time so I'm gonna read it out from the moment I checked into a hospital I checked into hospital the night before the big day do you know how weird it is to sleep in a hospital bed when you aren't really injured it's weird and the noise is a creepy I didn't sleep a wink I stared at the ceiling all night waiting waiting to 6 a.m. to come around where the nurse came in and asked me to have my final shower before I put on my sexy gown I'm wheeled down to theater and waiting in pre-op I'm the first one in so it's quiet and I'm the only bed waiting passing the minutes which seems like hours by watching each and every shuffled step of the cupboard feet of nurses and doctors they're funky headwear and colorful clothes I guess it did make me feel a little bit better I'm given a red wristband to denote that I am allergic to morphine I was given morphine for pain relief and the last operation and my skin like practically crawled off me so noted not to have it again pepper denim is for me this time I remember speaking to the Anantha cyst and then counting down from 10 once I was lying on the cold skinny table in the theater room next thing I know I'm in pain I'm thirsty and in recovery my hip had been replaced they had dislocated the joint and placed a small frozen crystal that was 150 degrees Celsius in my socket cup what this did was then freeze and killed the previous PB NS in the immediate joint as well as reached temperature of minus 40 degrees Celsius on the inside of my pelvic wall this was in case the PV NS had broken through to my self tissue on the inside of my pelvis that could be killed before doing any more damage and by the way it never broke through so I was so lucky to have my PV NS contain in my hip my lady parts were protected the freezing man I had to have a total hip replacement my cartilage was now destroyed and mechanically they had to put me back together again they had to work like angels to rebuild what the pdms had destroyed and they had succeeded they cut off the top of my femur which was practically rotten with PB NS they then drilled a shaft down my femur into my thigh bone where here the stem was fitted and locked in attached to the top of my brand new stem my new titanium neck was screwed in this would then hold my ceramic ball which would match my ceramic line that titanium cup before they put in my socket cap however my pelvis had to be patched up due to just being so destroyed by the PB NS after removing the spare bone from the back of my left hip everyone has their bone there they donate my own bone to my pelvis like repairing the hole in the wall once set the socket was fitted five pieces of foreign material later and my hip was one again 11 frozen sections were taken in and around my joint during theater all of which came back clear of B B and s 18 solvable stitches locked out the P D and F to the outside world and I was now protected and penis free of this bone 18 monster so yeah guys I am pianist Frankie because of these crisis injury I was in hospital for a week absolutely high on pin 13 hallucinating and thinking Dawson from Dawson's Creek do you remember that shirt I was being chased around by a giant cockroach I only wish that iPhones were around 10 years ago and even Facebook some funny would have been filmed two days later my drain was removed from my and my drip came out and died Jesus became my painkiller of choice whilst in hospital I was visited by the in-house doctor to see if I was willing to participate in an anonymous trial the trial was regarding a selection of patients receiving an injection some of the injections contained a drug which would assist bone density and some would receive a saline or placebo and it was proven to have worked successfully on protecting a cancer patients bone density now they wanted to see if it would have cyst hip replacement patients bone density the side effects were severe nausea but nothing dangerous mom and dad had asked that I would participate but only if I could make sure I could get the trial drug they did in the nauseous setting by this stage I was five days in and over and I was fatigued tired sore and bored mentally I was suffering I wanted to go home on the sixth day I demanded I go home I had had enough silly of me because I had had a turn of high fevers and restless sleep the first night I got home in the end it was just a reaction to the trial drug but really I should have stayed in hospital just just for one more night I can't really remember I can't really remember but my recovery was slow but not very painful I was oncrutches for about six weeks bearing weight in hospital and hobbling around without my crutches around to two weeks post-op and I was very naughty the old pain was a thing of the past and one of the people rave on about how fantastic total hip replacements are come February three months post-op I started my studies at TAFE college and was on a hunt for a job in the events industry I was only 19 at the time so my career was only just launching by March I had landed my first full-time job in the industry I was now successful in my life and the age of 20 resumed having a hip replacement is not as scary as you think it is life changing and in my case was absolutely necessary if I mean if I hadn't even waited one week it would have been disastrous I wonder how I am going to feel in another 20 years from now so I guess that was really cool to read back I mean that's the the the structured side of the story and having a PV NS removed cryosurgery ultimately it did freeze the PVA nests in its microscopic level that was done in 2001 it's now 2017 so 16 years later I am still Pierre DNS free as far as I'm concerned I'm cured of it I've never had any issues with regards to PV ns I will do future videos about the replacement of my total hip replacement I had to have it already done ten years after it was implanted I have had a bit of bursitis in my kneeand I have current tendinitis in my hip but with regards to PB and s I'm free and I can only hope that others out there are also getting cured of this horrible bone eating monster something that is so painful and so scary to deal with when you don't know if you're ever going to be free of it so my thoughts are with everybody who's suffering my thoughts are with everybody who have it in joints that may not be as easy to get to such as the hip people who have it in their ankles there are so many bones in your feet and your ankles that it could be a little bit harder to get rid of so I am thinking of you all but best of luck I hope that I give you some sort of hope and inspiration that anything is possible you can do it and just finally I'm going to end this video with a few photos it's a graphic warning content but I know leaving with a few photos of what the bone looked like when they took it out of me and what the tumor had done to the top of my femur and if I have any other photos that I find I'll put them up as well so I'll leave you with this please don't be eating when you watch it cuz it's pretty gross

Hi Belinda I did PVNS operation two times still it reocur which hospital did u get treatment

It took me 7 years and a bunch of doctor visits to finally get the right diagnosis.

I have synovial chondromatosis in right knee. Synovectomy has been performed to remove loose bodies . Do you have any idea what are changes of regrowing loose bodies. Precautions to be taken to avoid reoccurence ?

I have this in my left hip but mine is defuse. Had it out in February. They said they can only cut it out. I'm in a Lot of pain.

My wife had bilateral hip replacement a year ago at 26 years old. She is as proud of her scars at the beach as you are! She is has not improved as much as you have seemed to, tho! Thank you for sharing, it's a comfort to my wife.

I was diagnosed with PVNS on Monday and am struggling with it. I’m 25. They won’t operate yet as the lump isn’t huge and because my cartilage tear isn’t so terrible. I can’t work, I can’t work. I’m miserable! Not that I’m happy that anyone else has this, but I’m glad I’m not the only one.

So I have a pvs in my knee I have a 6 surgery and so my thee surgery is want will but my last surgery I have so there is five I go to the icu for a little bit but my six surgery I have a thing on my knee knee replacement surgery. So have a doctors appointment on Thursday.

Thank you for sharing. I was terrified when diagnosed and so few knew what to do...

Had anterior Dec.18 Not that big of a deal. Ride my bike , do my PT exercises and living without the limitation of arthritic hip is great

Hi can you tell me what type of hip you used? I'm 28 years and have to do a bilateral replacement due to Avascular Necrosis

Hi Belinda! I came across your videos, which I enjoyed :) I'm a 38 year old male, I go in to surgery on Tuesday 5th Feb 2019 (in a few days time), to have pvns removed from inside my right hip. My surgeon is Dr Cladia Di Bella and she's absolutely amazing! She even has a video on youtube, she's based in Melbourne :) My pvns was picked up quite early so hopefully it'll be a good outcome which I'm sure it will be. As you mentioned it can be difficult to remove pvns in certain joints, the hip being one of them. My surgeon said the pvns in my hip is in a difficult spot to get to and is near a major blood vessel. I'm slightly anxious but Claudia has performed surgery on me before, she's truly one of the best in Australia so I'm very lucky to be in such good hands! :) Thanks for your videos :)

I've had pvns since I was nine (I'm 12 now) and at first they thought it was juvenile arthritis, so that's how how they treated it. I had a bunch of arthritis injections and stuff, but the fluid was coming out bloody. My doctor figured out what it was and I went in for a biopsy on the left knee, and they saw I had diffuse PVNS, so yeah that was fun. I had my 5th surgery in August and I have to have surgery every 6 months, but it usually happens every 8 months. Luckily we caught it early on cause my best friend had noticed my knee was swollen (thank you Caitlin lol) and I am VERY grateful that I don't have as much pain as lots of others do. I was going to do radiation, but my surgeon got word that that was getting rid of it, but I would come back as cancer sooooo😬 that didn't happen. I'm really happy that this doesn't really affect my every day life, besides some pain during PE, but nothing really bad at all. My tumbling/cheerleading coach and teammates have been super helpful and supportive of me getting better after surgery and helping me get back into shape. This is just my story I wanted to share😁

I'm a 35 year old male who's had both hips totally replaced and would love to ask you some questions if you have time

What is the cause?

never herd so much waffle . most are in agony after this op

its been a year since my Surgery I still have Muscle and Tendon pain along with Bursitis but a least I can Walk

I have heard from my Doctor it can take 2 years to get the most out of your new hip for some people but your new hip will never be as good as your old one was

Ha Ha skiing is ok Just do not fall that,s like swimming but do not get wet I assure you dislocate your new hip once, skis are out the window

Thanks for sharing I just had a hip repleasment @54 age make a big duference after 10 years suffering pain and now I can do whwereber a like but am stil afraid have dislocation maby is in my brain thankyoy x sahre

My daughter has been diagnosed with PVNS. She had a "classic appearance" (of PVNS we found out later) on her knee, a mass the size of a goose egg, removed last month. They sent it to pathology and the diagnosis came back PVNS. She got the growing mass at 18, surgery at almost 22. HOW DO YOU FIND THE TOP EXPERT ON PVNS IN THE WORLD, SINCE IT OCCURS SO RARELY?? WHO is that person??

I'm having a hip replacement this sept at age 25, but my surgeon told me that I can ski, jump ect without a problem and that I would NEVER need another hip replacement unless breaking my entire hip. maybe just the new technology? he said the only thing that I might have happen If i wear my hip alot is that in about 20 years they just replace the lining of the joint witch is a very easy and non invasive procedure because they dont touch the bone at all. He also said that pregnancy and labor would be easier than before my hip replacement. granted I had Perthes disease. and as far as scars go. the 8 cm (max) cut they are going to make is NOTHING in comparison to what my scars look like from previous surgeries.

I need a hip op soon, did you ever think about getting a tattoo to cover the scar? I don't really like them myself, but hey it might make you less conscious of it.

I have it on my left hip, I found out just last year I am 13. I had two surgeries already and its not that bad after the second surgery but it hurts when i do a lot of work... It's very confusing to me but idk what to say or think about it..

So, glad I found your vlog. I had both of my hips replaced at 45. I was a dancer since age 3 and danced until I was 34 when I couldnt dance anymore. I had to wait and suffer for almost ten years until I could be accepted for health ins. Now Im 48 and pain free. I also wear a bikini and I am proud of my scars and wear them proudly. Thank you for posting, as I dont feel alone in the world of hip replacement surgery.

Thank you for these videos, Belinda!

I have It in my knee. Since I was 13, now 25. They did remove it and now it's growing back. Oh the joys of pvns!

U're a hero for going through all this surgeries.😉

Thank u for this video.

GREAT VEWS ON LIFE BELINDA! WHAT A BEAUTIFUL YOUNG LADY YOU ARE! AWESOME VIDEO, GLAD I FOUND YA! RIGHT HIP OP IN FEB 2018 - VA TUCSON, AZ @ 68! SEMPER FI

Hi, these vlogs have been really helpful to me, I was wondering how long roughly it took for your tumour to regrow?

Hey, thank you for this video. I'm only 26 and I am cursing toward bilateral hip replacement... I've never been so terrified in my life, haha. I need to be able to run short distances for my career and I am worried it'll be a career ender. Thank you for sharing your positivity, though. It is contagious

Can you please give me the information on what cured you???I have it in both knees and afraid it's now in my shoulder. It started when I was 20 but they didn't know what it was until I was 22 when I had three surgeries back to normal and radiation therapy only for it to come back about every two years. I have now had right knee complete and left unicondural because they didn't know how I would react to knee replacement because of other pain conditions I have. Right now not even a year out my right knee is back swollen and intense pain. I'm so sick of it. They say there is no cure, but here you are living proof. My shoulder had a deep dip in it now and knee lady said it was impingement syndrome, but I highly doubt it.I know the pain of pvns. But she wouldn't do an MRI to confirm it. So my new specialist orthopaedic surgeon, is willing to help where all others refused because in America getting a replacement if any-type before 40 is frowned upon. I fought for ten years plus to get my knees replaced because it was bone on bone, killing me always. Missing work due to multiple surgeries, ending up losing my job because of it. But I would love to have a look so I can send it to my doctor so I don't have to have my knee flayed open every two years to clean out the disease. I often wonder on my, what they call bursitis, of my hip really is. The say hip dysplasia.... But the pain, the numbness, the tingling and the loud clunking it makes. I have American medical society, it's all about money and not properly treating. It's all about the age, the money, the status. But please. I want to get this to my doctor, see if the state insurance will cover it. Thank you so much. So glad I found you because a couple years ago you couldn't really find anything on KZfaq about it.

Keep us informed about the prego problems. Thank you very informative. They shouldn't be looking at you anyway, big scar just tell people that you got shot.. LOL

glad to know you are PVNS free

I am suffering from PVNS in knee since 4 years, I hope you get cured soon and myself as well.

Now they want him on chemo that only has a 20-30% success rate, this is overwhelming!!!

My husband has PVNS, he's 42 and they won't do hip replacement yet, he's miserable, were actually at the oncologist right now to see what oral meds he can do. This is so hard to watch him go through this, 😢😢😢

thank you for the video it is too help full I would like ask more questions I have the same problem