The story of Tracey
In July of 2006, I was in a car accident, where I was rear ended. I was completely stopped at a stop light, as was the truck behind me, but he assumed I was going to turn right on red, but i didn’t. My left knee came up and hit the steering wheel. Needless to say, he hit me at less than 2 MPH. I was initially taken in for back pain. MRI and xray on back came up normal. Less than 2 months later a huge lump formed next to my knee cap, which was a subdural hematoma. I had surgery in Sept 2006 to remove it. In December, I noticed increased swelling and pain. I went back to the oncologist that removed the hematoma. He immediately ordered an MRI. I went back to see him for the results and he said he saw some strange looking tumors, but he had no idea what it was. He immediately referred me to an OO who I saw 2 days later. Those 2 days were agony as he said he didnt know if the tumors were cancer. At my initial appointment in February 2007, my OO stated he was 100% sure it was PVNS. He assured me, it was non cancerous. I was relieved he said that until he said, surgery will be needed on the front and back of my knee to remove the tumors. He said he would be able to remove them from front and back at the same time. So surgery was scheduled in april 2007, 10 days shy of my 29th birthday. So, upon leaving I was glad there was a plan… until I googled PVNS. Waiting for surgery was unreal as I hadn’t found this group yet, and no one aroubd here (syracuse, NY) had heard of it. So surgery day came, and I was nervous. When I got into recovery, I was told the OO was only able to do the front of my knee as by the time he cleaned out what he could, I had been on the operating table for 8 hours and I was starting to crash. So he made the decision to close up. He told me he removed a tumor the size of a football along with 500 other tumors ranging in size from a pee, to a golf ball. He then said he would have to perform another open synovectomy in 6 weeks. I was discharged after 4 days. Started PT a week later. Most of the PT was in the water…. I had very little PT pain. June 2007, had second surgery which the doctor said was just as difficult because there are so many nerves in the back of the knee…. So, I ended up with some nerve damage from the tumors. He advised the damage was very bad. But said the cold weather here in CNY would bother the joint, and he believed they would come back. So, I moved to Florida in October 2007. In 2009 I started having issues again and got referred to an OO in Gainesville FL, who happened to know my OO up here and could treat me. So long story short (too late), further surgeries ensued(6 more) from 2008-2010. The ensuing damage was worse each time. I needed bone graphs as tumors ate into my tibia and femur. Also, during surgery #7, they knicked a nerve causing permanent nerve damage. I have no feeling in my outter 2 toes, into my ankle and up to my knee. I ended up moving back to Syr, NY in 2015 and continued to have issues. Was able to get back in to my original OO, who said my only option was a TKR. So, Jan 2016, I had my knee replaced. I was hoping I was starting to climb out of the pain hole I had been in. Well, as of right now, 18 months later, the PVNS has NOT returned, but there is so much damage, and scar tissue the TKR technically is not a success.
 My pain is constant all the time. What they were hoping the TKR to last 12 years, is down to 8, unless it gets injured. My pain level on most days ranges from a 7-9. Unfortunately, due to the “opoid epidemic”, my doctors won’t prescribe anything for pain. They even diagnosed me with chronic pain, but even though low doses of prescription pain meds work, they are too afraid of NYS to write me a script for anything. I’ve been on lyrica, gabepentin, NSAIDS, and muscle relaxers, and now I am on nothing. I don’t sleep for more than 1 hr a night because of the pain and I’m so frustrated.Â