Growing up with Pigmented villonodular synovitis

By Vickie, Pigmented villonodular synovitis, United States, June 3, 2018

When I was about 10 I tripped a fell against an old rusty motorcycle. I ended up with a two inch gash across my left knee. My mom took me to the doctors house where he stitched me up on his diningroom table. Around the age of 15, I started to have bad pains in this knee. About this time it started to swell so much that the bottom part of my leg and foot would turn blue. My mom took me to a leading orothopedic surgeon who told me I must have torn some cartlaige. I had surgery to remove the cartlaige and did the physical therapy that was ordered. Still having severe pains we go back to the surgeon. He yells at me and said I must not have been doing the exercises. I gave up on doctors and tried to live with the pain and swelling. At age 20 I am planning my wedding when the pain gets so bad that I can't stand upright but have to drag myself to the bathroom. Being in an upright position causes intense pains that are unbearable. I grab the phonebook and search for an orothpedic surgeon. I find on that will take me and make an appointment. He suggest we open up my knee and see what is going on inside. After multiple exploritory surgeries I set a date to maybe figue this out. I only asked him to see if he could take away the pain so I could walk down the aisle on my wedding day without crutches. I found the doctor who finally knew what he was looking at. He told me he saw one other case when he was in Vietnam and knew what I had. Surgery was a sucess. He told me to think about a total knee replacement when I was 30 as I had so much permanent damage. At 45 I finally decided it was time for a total knee replacement. My Pigmented villonodular synovitis has not come back and my new knee is still working now in my 60's. My advice is to find a doctor that will listen and take their time with you. If you get no results keep looking. Thank You Dr. Killkenny for helping me to live my life in no more pain. And yes, I walked down the aisle without crutches and in no pain.

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