Seven years ago today, I checked into the hospital to have my knee cut open on the front and back to start the arduous process of fighting what everyone believed to be a non-cancerous tumor in my right knee. They called it PVNS, abbreviated for pigmented villonodular synovitis. Inflammation in my joint lining that had a 50% recurrence rate after being cut out. Some patients even endured radiation to get rid of it.
That spring and summer my knee blew up to the size of a small melon. I couldn’t straighten it all the way and it felt hot to the touch. Who knows how long something had actually be going on though. I remember seeing my doctor in high school about that knee. It was slightly irritating me, but I can’t remember in what sense now because it was so mild compared to what I experienced 15 years later. The doctor then said I just had an extended tendon in my knee. I used to sit with my right leg bend all the way underneath me. Maybe that was the beginning. Then, summer of 2012 after xrays and MRIs another doctor wanted me to come in immediately to discuss what they found. I’ll never forget what she said, “you have a very unhappy knee” followed by pigmented villonodular synovitis. My mind spun as tried to understand what she was saying. The only reason she even knew what this was after the imagine report was because a friend of hers did research on it in med school. I was given a handful of packets and sent on my way and told the surgeon’s office would be in touch.
Thank God my mom was in the room with me and my fiance in the lobby. I don’t remember much about the rest of that day besides just being confused about what was happening in my knee. I found a small support group on facebook for PVNS. Every person had horror stories. The surgeon who was going to treat me, likewise wasn’t very optimistic. She was one of two surgeons in the state that was an expert in this disease. My case was diffuse, or involving all of the joint so we had no choice but open surgery. I was devastated. This was the most challenging point of my life at this point.
The morning of Nov. 8, I checked in very early to the top ranked hospital. I couldn’t figure out my gown, and Adam had stepped out of my prep room for a second so I sat there naked until a nurse came around and helped me get my gown on. Then I had an anxiety attack. The anesthesiologist said she’d get me some meds to calm my nerves. I remember watching the ultrasound of my groin area as she found my femoral nerve to place the nerve block and then my general anesthesia quickly set in and I fell asleep.
The first thing I remember when I woke up was my surgeon telling me “the good news is you don’t have PVNS. The bad news is that we don’t know what’s wrong with your knee.” They had only needed to open my knee from the front and still removed my synovial tissue and did some other repair work, but being surgeons, admitted they were not experts on joint issues. I was furious I hadn’t insisted on a biopsy of the fluid in my knee to confirm PVNS. They just seemed so sure that’s what it was.
Recovery was hard. Crutches for 9 weeks. I had a bad reaction to some pain meds. My nerve block stopped working a few days before they estimated and we had to pull it out on our own at home. The pain was second only to delivering James without meds. Only this pain dragged on for weeks. I remember the first time I accidentally put weight on my right foot – searing pain like my nerves were on fire; I didn’t make that mistake again. And all of this happening during the holidays and 6 months before our wedding.
After I finished PT and checkups with the surgeon, I decided to switch providers. The next year I was on my husband’s insurance and decided to go with another network of doctors. I was just unimpressed with the way my case had be handled at this university based hospital. There was no care for the individual, or at least I felt that way.
A couple of years later my new doctors diagnosed me with arthritis, suspected rheumatoid arthritis. My knee blowing up was likely the beginning of that and I would have had to have surgery anyway. My medication has mostly been controlling my disease and I love my team of doctors. They cried with me when James died, celebrate my accomplishments, and really get to know me as a person and cater my treatment to what’s best for the whole me.
It’s likely that switching doctors put us on our path with James too. My obgyn sent us to the high-risk doctors who knew people at SCH and helped us make those connections. If James had been admitted to one of the children’s hospitals in town, I’m sure the outcome would have been the same, but I am so thankful for where we did end up. SCH is such a huge part of our story.
My knee is better now. I don’t have much muscle tone on that leg, and I still can’t fully extend it, but I am able to hike for several miles without getting tired. It hurts when I’m working too much standing on concrete and when I ovulate. But I can get around pretty well and know my limits.
I used to have PTSD about my surgery. I would replay that whole day and the following weeks in my mind. That has faded, like my scar. I now have even more horrifying stories to tell and sometimes wonder if living through knee surgery helped prepare me for our life with James. I know I’m not special. I know countless people have knee surgery. But it was a huge thing that changed the trajectory of my life.
So tonight I celebrate 7 years with a scar. I’m still learning the lessons it’s teaching me.