The story of Erin
Back in 2010 I was out in Lake Tahoe, California visiting my family and we went Skiing. While skiing, I fell and afterwards my knee was hurting badly. When we got back to my aunt and uncles house, my uncle (an orthopedic surgeon) looked at my knee and told me he believed I tore my meniscus. Fast forward a few weeks and many sessions at Physical Therapy, this was still not getting better, my doctor (back home in NJ) believed this was still torn so decided to do surgery in July 2010. During surgery my doctor saw my meniscus was healed but he found all this “coral looking stuff” which was taken out and sent to a lab. The results came back that it was Pigmented Villonodular Synovitius, PVNS for short. I was referred to a doctor over an hour away who I was told knew more about this disease as it is very rare. This new doctor said he needed to do an open and key hole surgery to remove it all so in December 2010 I had my second surgery. I was okay for about a year and all the pain and locking came back full force. I was forced into my second open and key hole surgery in Jan. 2012. After this surgery I was okay for about three months and again, full force again. I decided to put this one off and find another doctor as this doctor did not want to try other options, like drug trials. I found a new doctor and he deicded that surgery to get out whats in there than send me to Sloan Kettering in NYC for a drug trail, we went on this path, having surgery again in May 2014. I was on a drug trial, and it worked but turned out I was allergic to this. Fast forward to now, I am still in pain but am waiting until it is unbearable again for my next surgery.