PVNS: experience and causes

Had my post-op this morning in fact and the Doc seems quite pleased with the healing of the incision and had reassured me the current effusion around the knee which is causing it to look extremely swollen will go down in time (hopefully not too much time). The scar itself if somewhat numb to the touch so i'm hoping to regain some feeling there down the track. I'm also looking to arrange sessions with the physio in the next few days. A check in with the rheumatologist may also be in the works since the tumourous growth was so large, there may be a yttrium-90 injection in the works.

Sitting down i can get the leg to go just about 90* now however that seems to compress the joint effusion causing quite a bit of discomfort. Will hope to push it more in the coming weeks. I am though quite shocked at the amount of muscle loss in the affected leg. Simply measuring the calves there's about the top 3rd of a pinkie difference in the diameter and holding the quadriceps is probably not much different to handling goo.

Morphix: You are correct in saying that its too soon from when you had the last operation however from what i've read the main reason the surgeon's so hesitant to cut into the posterior of the knee is because that's where the bulk of nerve endings, muscles and major arterial/venal vessels lie. The risk of complications in arthroscopy or arthrotomy are alot greater. That's why most knee ops are done via anterior incisions.

I am having an MRI scan on both knees next weekend as my left should have progressed more than it should have and it is now clicking out of place like it used to do before my surgery. My right is uncomfortable and I dont have a full bend, but this could be due to over compensating from my surgery to the left. I am mainly doing this for peace of mind as I can never ever imagine going through the surgery again and I really do feel for anyone who has it done. I wouldnt wish it on my worst enemy!

Don't feel self concious about the scar accross your knee, I know I did at first because I have always had legs out for dance and also did modelling for dance wear. But during the summer when it was boiling I thought, you know what stuff this and put shorts on and became quite proud of my war wound I've been told after a year it will fade to a paler colour and not be so raised anyway!

I wish you the best of luck stay positive!

I remember after I just had my surgery, even just sitting in a chair and moving my leg into a 90 degrees position and trying to move it further in towards chair was a major undertaking. As was getting on and off my bed! It's amazing the progress really since then. I'm almost back to normal apart from the keel/squat thing.. just give it time and be patient. Do all your exercises and keep moving that leg regularly, even if just a little bit if you find it too stiff. I had massive swelling (my ankle and knee/lower leg was twice the size, it was quite alarming) on my leg post-op from standing and sitting too long. Swelling it limits mobility further and ability to do stretching etc, so try to avoid it happening. The normal swelling around the wound on my knee stayed for a quite long time, in fact its still a little swollen even now, 4 months on almost! But I can begin to see my knee shape again and some muscle coming back

Good luck with your recovery, hope it all goes smoothly.

I am in my 40's now and active in sports and camping/hiking most of my life. About 2 years ago, I jammed my left knee in a soccer match pretty bad-slipped and took a bad step and my knee tried to bend forward instead of back-felt very poorly for a week or so and it really never healed. I had a nagging pain for a couple of months so finally went to the doctor to see what was up with my knee. My GP said I probably had a micro tear in one of the ligaments in my knee, so she told me to get off the knee as it was going to take a good while for it to heal by itself. There is no knowing for sure what causes this condition, but if I had to guess at a specific injury or incident that contributed to the problem, this would be it for me.

So about 4 months ago I was getting out of bed one morning and my knee completely gave way, just collapsed out from under me. It's hard to describe but it felt like my knee "slipped" sideways. It didn't hurt when it was just a collapse and that happened a few other times before I could get an appointment with my doctor, but then it locked up pretty bad once, and it ~hurt~ that time! I couldn't straighten my knee at all and it was very painful, but when I giggled it sideways, it kind of 'clicked' and then straightened back out. I had the doctor move my appointment up to ASAP! The collapsing has been happening randomly once or twice a day now, the painful lock about once a week. It's obviously not getting better!

GP referred me for an MRI. The MRI showed the little PVNS tumor behind my knee cap behind the ACL so off to the orthopedic specialist I went. It is "small" now, the size of an M&M or a peanut, and shows no other damage to the ligaments or joint lining so my surgery will be arthroscopic rather than opening it up all the way. This is a rare condition, but not unheard of-the orthopedic surgeon said she sees a case every year or two.

It is frustrating to know that even though it is a small tumor that we've caught before doing any other damage to my knee joint, there are still not good odds of it not returning. My surgeon also says the average is 50/50 that it comes back. For me, though, with the problems it is causing I don't have the option of leaving it alone and observing, so I'm getting it done now and I'll just have to hope for the best.

Thanks again for all the good info.

My name is Erin, I am 21 years old and live in the United States. I have diffused PVNS. When I was 17 years old I tore my meniscus while I was skiing in California and after months of physical therapy, I was still in pain so my doctor decided to do surgery to surgically repair my meniscus, July 2010.Through arthroscopic surgery it was found that, that was healed and my doctor found "coral like stuff" in my left knee. He sent it to the lab and after going to one of the top orthopedic doctors in NJ I was diagnosed with PVNS. On December 22, 2010 I had my first open surgery to remove some of the PVNS. That surgery was very rough on my body as it took me a long time to recover. I was doing very well up until July 2012 when the pain and severe swelling returned. I got my second surgery on January 8, 2013 (3rd knee surgery overall) and here we are today in November, not even a year later with me being in severe pain and with severe swelling. I go in for another MRI tomorrow morning, but my doctor thinks it is back again. This has been so emotional for me because I am so sick of being in this much pain. I am no longer allowed to run or anything of that sort. My doctor and I have tried everything, I have gone to physical therapy, gotten cortisone shots, got new inserts with better support in my shoes, and nothing seems to be working. I do not know if I can deal with another surgery. If I get another surgery that will be 4 and I am only 21 years old. I work with 2 and 3 year old's and my PVNS makes it hard for me to sit on the floor and play games with them, and even its difficult for me to pick up a child due to the pain. I just do not know what to do anymore.

I finally saw a doctor, got an MRI, and right away scheduled for tendon and ligament repair. While having surgery, my doctor found this fluid and sent it for studies. I was then diagnosed with PVS. This has complicated and prolonged my recovery greatly.

I returned to work after4 months, and seemed to be slowly improving. I am able to do about an hour of cardio (eliptical or biking) a day, but my range of motion is horrible. Working for 12 hours on my feet is very difficult as well. Just last week I began having increased pain and swelling, and decreased mobility. I just saw my doctor a few days ago, and he is scheduling an MRI. He thinks he will eventually have to scope my ankle.

I am trying to learn as much as i can about this condition. Does anyone know if it is an inflammatory response in the body? I know not much is known, but has any ones doctors mentioned any homeopathic antinflammatory techniques to keep this at bay? i believe i will probably go through with the scope, but am wondering the best ways to try and prevent another "flare up". This is how my doctor is describing it, as a flare up, that is mostly likely recurring.

Thanks for any information! i have read all the post, so i am aware of all the info that people have posted before. I just think its great to share info, especially from what docs are saying. Working in the medical field i understand medicine is a practice, and diseases and conditions do go misdiagnosed for a while because of just that... rare. So, any info from personal experience is helpful.

I think you're right about the condition possibly being an inflammatory response that would make a lot of sense because nearly all the cases I've seen and read about, an injury and/or intensive use of the joint proceeded the onset of the symptoms.

I've found out myself that the condition does have "flare ups" as you describe (before it's surgically treated, and sometimes after for some unlucky people) where using the joint too much will make the symptoms worse, and doing less activity sometimes can make it subside. So that kind of suggests the body is responding in a kind of auto-immune way.

This is all speculation of course and there's no definitive answers and not much research been done into this rare condition, probably due to the lack of patients to carry out a sizeable clinical study. The only clinical study I'm aware of was in the UK in the 1970's on about 23 patients.

When I had fluid drained (before surgery) the symptoms improved considerably, the pain subsided and I felt back to normal almost, just with a limited range of movement on my knee. I started doing jogging and a lot of walking again, and that triggered a return of the symptoms again, worse than before..with even more swelling, stiffness and pain.

My advice is to try and minimise the amount of stress/exercise you do on the joint until you have surgery, if possible, as the symptoms will be more manageable then and you'll be in less pain.

My consultant told me that with diffused PVNS that's a high risk factor of it returning so I guess I'm fortunate that I have the localised type which they say has somewhat less chance of returning.

The problem with this condition is that it's a bit like cancer when it comes to surgery, in fact it's harder to treat than cancer in some respects. My consultant said unless they get every affected cell out, then there's a risk the affected cells can proliferate in the joint fluid again, much like cancer cells do. That's why they sometimes use radiotherapy after surgery if returns, as a fail-safe method to try and destroy any remaining affected cells.

I'm wondering why they don't use some form of chemotherapy as well for people who've reached their 3rd surgergies or more, such as yourself. Although that's very unpleasant treatment (my mother just went through it for cancer) it's probably better than the alternative of having repeated surgeries with the stress that causes on the body and joint, plus all the recovery time etc.