User:Happy2b6ft6

I have PVNS, Pigmented Villonodular Synovitis.
I am seeking others who have PVNS to share their experiences with me. There are little first hand accounts of PVNS patients. I have started a blog about my experience with this painful condition and hope to learn more about it and its prognosis from other people who have gone through it.

PVNS is a tumor-like condition that exists in the lining of one's joint. (Usually only one joint is effected, most commonly the knee.) My experience with PVNS began three years ago. I was in the best shape of my life. I came home one day and got out of the car and felt a sharp pain in my knee. I had to take some time off from the gym. My knee has not been the same since. The pain has increased and become more constant over time. It is now at a point that sleeping is hard. I was misdiagnosed with patella femoral syndrome a few months after the first sign of symptoms. From there I was sent to physical therapy and was given exercises that caused more pain and more swelling. My primary care doctor was not overly concerned and advised me to take it easy, listen to my body, ice my knee, and take anti-inflamatories. After not feeling better and not being able to work out, I finally got a referral to an orthopedic surgeon. He surmised that I most likely had a cartilage tear. After two MRIs my dr. suggested that I may have PVNS, but that it was unlikely due to its rarity.(1.8 per million people) He described PVNS as a non-cancerous tumor.

I had arthroscopic surgery with anticipation that a cartilage tear would be found and repaired and I would be on my way to feeling better. The purpose of the surgery was also to do a biopsy of the lining of my knee to determine if PVNS existed. The results showed that PVNS was likely. From there I was sent to a rheumatologist to rule out other possibilities, like rare forms of arthritis, which would strengthen the PVNS diagnosis. The rheumatologist agreed that PVNS was the correct diagnosis and agreed I needed to go to an expert in a major city.

My PVNS diagnosis was confirmed byt he expert and I will be having an open suynovectomy in mid July. I will have two major incisions, one on the front of my knee and another on the back. This has been a frustrating and painul journey.

Please visit my blog, http://kimberleesblog.blogspot.com/ to see what I am experieincing and to find my contact information. If you have PVNS, you are not alone. Please share your story. My blog has links to other PVNS sites that may be helpful.