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ok I will start

maryla Message
6 Mar 2009, 01:36 AM

I have not been officially diagnosed yet, but had an MRI that I kind of forced them to do, and the radiologist said the mass in my left knee looks like PVNS. I think it has been in there for quite some time, and I am having a hard time finding anyone who will take this seriously. My PCP has referred me to the orthopedic surgeon who I saw about 2 years ago who thought maybe it was just a little scar tissue. But, now she has an MRI to look at, so maybe she will change her idea. The more research I do, the more I think it is PVNS. For about 4 years my knee has been swelling on and off and getting very warm to touch. There is pain too, but it is hard to figure out where that is coming from as I also have very bad osteoarthritis, my ACL is holding on by a thread, as is the MCL. I had most of the cartiledge removed about 10 years earlier. At that time the surgeon said I had synovitis, so I wonder if it was beginning then?? SO, I think my journey with this is just beginning. I would love to hear anything from anyone about your experience. Since none of my doctors, or the PT I work for has any idea about this disease, I have been doing all the research myself. Is it considered cancer? just not malignant? It looks like the doctors that people go to are oncologists....I am in Vermont...anyone close to here? Have any idea about doctors? I see one in Boston some have recommended at Dana Farber. well, I hope since I have broken the people will write.....I look forward to meet others with this illness......I also have fibromyalgia and chronic fatigue, and I am on disability because of them. Hope to meet you soon! M
perennialhil Message
6 Mar 2009, 05:11 PM

Hi I have PVNS in my ankle, not knee but the way the pvns works is still the same. The pvns starts growing in the lining of a joint. There are 2 types - nodular which tends to keep an encapsulated "bubble" around the disease and helps to prevent it spreading. This is usually removed surgically and that is the end of it. The other type is diffuse - spreads around the local area and grows in long ribbons and grows through and around tendons and has been known to attack some of the bone (but not in all instances). It affects one in about 1.7 million and usually affects people between 30-40 years but does affect ages either side. This is not classed as cancer, just the immune system causing cells to be different. It is widely thought that with the diffuse type once it is opened up it grows at a much faster rate and there are some of us who cannot have a joint replacement (ankle replacements are not so easy yet) but many people have a few surgeries on their knees before needing a knee replacement. The only drug that seems to have any effect is Sutent and that is very expensive (you would need good insurance cover in the States and here in the UK they will only give it to forms of malignant cancer and even then people have had to fight). I also have ME.CFS & Fibromyalgia and know how difficult it is to keep going with exercise etc. I cannot walk on my right leg at all now but find that swimming really helps me to feel more loose even though it takes a while to get going in a morning first!!! I also take a natural product called Bromelain (extracts from the Pineapple plant). This is supposed to help keep inflammation down and it is thought that inflammation assists the pvns to grow. If you go online to delphiforums and look up pvns you will see many stories about pvns and what people have tried and more importantly what doctors in what countries people have found to be good. Make sure you see a good orthopaedic oncologist (they specialise in tumours (benign and malignant) and will best help you. Good luck.
maryla Message
15 May 2009, 05:19 PM

Update on me: I had arthroscopic surgery yesterday. The surgeon thought she was going to go in and remove the Hoffa Fat Pad, as she did not think it was PVNS, but it turned out it was. She said she has good results usually, as she cauterizes as she removes it. She said it was a fairly large amount, and was on the end of two separate does that mean diffuse? Hopefully, this will take care of it, but from what I have may not. Since this site is not very active, I also found a site on facebook. My PCP is a very intelligent and current kind of guy, so when he hadn't heard of this, I knew it was pretty rare. So, the more support between those of us who have it is important to, hopefully, I have been "cured"...good luck to those of you who have this, or think you may....