In June of 2013 I had surgery to remove the tumors in my right knee. The surgeon made it very difficult to see him. First his office said he was not accepting any new patients and then changed it to they weren't taking any patients for another 3 months. This of course wasn't going to be acceptable since I was losing mobility at a rapid pace. I called my family doctor who had referred me to the surgeon and complained about the lenght of time I needed to wait. I got a call soon after saying they could see me the following week. Oh how interesting.
I then was told at the time I finally was able to schedule my first surgery that I would be out by 11:30am and needed to arrange someone to pick me up. I thought, "Odd. I have never heard of a time limit for surgery before." But they assured me that was plenty of time to carefully remove the large PVNS tumors that had been growing for at least 10 years.
The recovery was not as rapid as I had hoped and I couldn't shake the time limit factor. Especially since at my post op appointment the surgeon commented about my largest tumor being so large and calcified that he had to chisel it out of my knee. I thought, "Then how in the world did he have enough time to get all of the PVNS out?" But the surgeon isn't great at answering my questions. A little reminiscent of Korben Dallas being interviewed by Ruby Rhod in the movie The Fifth Element. Not a lot of content in his answers.
So when I started noticing a tightening of my knee in the last year I knew something was going on. Something wrong. I asked for another MRI. I knew that the surgeon would need it to include contrast but as I handed the referral to the MRI people I noticed "contrast" was not checked. I told them I would not be going in that machine without it as the last time they kept me in there for 45 minutes and my surgeon said he needed the contrast in order to detect the PVNS. So with my quick thinking they were able to get the approval for the contrast. Otherwise I would have had to start the entire process of getting an MRI over again.
Sure enough the images came back positive for PVNS. But the most disturbing line on the report was, "lesion is slightly larger than the previous MRI" which was taken before surgery. Clearly an entire tumor was left in my knee with no attempt to remove it because I'm sure he ran out of time.
I went on Facebooks "PVNS is Pants" page and asked the community to suggest another surgeon. Several people suggested Dr. Christopher Cannon. But when I called his office I was told he did not accept my insurance. I went back to see the first surgeon, Dr. K. Fujisaki. We agreed to wait on surgery. However, lately my knee is hurting constantly to the point that I'm losing sleep at night. I figured that I better start whatever process it is to get to see the doctor of my choice.
I called Dr. Cannons office last week and told them I would be willing to change insurance companies in order to see Dr. Cannon. I was told that Dr. Cannon is not seeing any new patients. I refused to take no for an answer since my first experiences suggested that no doesn't really mean no. So I kept asking how, how, how and what do I need to do to make it happen because he is the only surgeon I'm willing to see at this point and my condition is so rare it is too difficult to find an alternative. Sure enough they consented and told me to have my current doctor send over all of my information.
I called my family doctor (who is retiring in a few months so I'm ok with jumping the insurance ship) and was told that I can't just ask for my info to be sent to Dr. Cannons office. I had to make an appointment.
I predict that I will not be getting any actual surgery until after the summer is over. If I'm lucky.
