The story of Taylor
I have a tumor called Pigmented Villonodular Synovitis or PVNS for short. Is a very rare, random, aggressive tumor that occurs in joints. Mostly in the knee or hips, but can occur in any joint. I have PVNS in my left knee. I’ve be fighting with PVNS basically since September 2012 when I slowly started to notice it hurt to bend my leg and keep it bent. Then I started seeing my knee swell. I went to just a primary care doctor and he thought it might be a cyst so he referred me to a different doctor who also thought it was a cyst. Until he did a biopsy/ drained my knee. He was expecting the stuff coming out of my knee to be white and when it wasn’t, when it was kind of like blood, it concerned him. So he referred me to an orthopedic surgeon. I had to get an MRI done before I met with him. So I got that done, went to his office, he walked in the room, look at my MRI for two seconds and said “this is what it is…” And by this time, it’s early 2013. So we set up surgery, and he removed the tumor April 2013. And everything was good, I was 95% back to normal. Which I was very happy with. Around July 2014 I started having pains and swelling again. So I see my doctor in September 2014, he has me get another MRI taken, and when I meet back up with him, he informed me that not only did the tumor come back, but now it’s in the back of my knee. So he said he didn’t want me to do surgery because he doesn’t think it would be a good idea, but suggests doing this new drug trial thing. He doesn’t give me much information, but tells me to go talk to the people at this cancer center and they could tell me more. I was not interested. So I went to a different doctor for a different opinion. He wasn’t too much help because he didn’t want to go against my doctor plus he didn’t really know much about the tumor anyways.. I told him I wanted the surgery and he said I had to have my other doctor sign off on it and give me the okay. But then my insurance changed and I didn’t end up doing surgery or the drug trial or anything.. Up until about end of January of this year, the pain with my knee and the swelling hasn’t been that bad. It would only hurt if I had it completely bent or very straight for too long. So I’d have to keep my leg at a certain angle all the time. Now, since end of January of this year, the pain has increased tremendously. My knee swells up often. But even when it’s not “swollen”, it’s still bigger than my right knee. Now even working half days at the dental office is unbearable. It hurts to drive and I don’t exactly know why.. I think the way the back of my knee rests on the seat maybe. But I’m not sure. I won’t even be out of my neighborhood and my knee will giving me a lot of pain. I’ll wake up in the morning, open my eyes, turn over and instant pain hit.. I don’t know why the pain is progressing so fast, but I hope it’ll end soon. That’s my rare disease. Happy (almost) rare disease day 2016! Thank you for reading my story.