Although I am still disabled I was finally able to move back to San Francisco last week after having to live with my parents for nearly a year.
I have now had to begin a new search for doctors all over again. I have to find myself an orthopedic specialist and a hematologist. Every 4-5 months I need to have new MRI’s of my femurs performed to see if the disease is still regressing. I met with my new GP the other day. I explained to him all about my disease and clotting disorders, neither of which he knew much about (at this point I’m used to that, as so many of you know). I told him I have to have MRIs performed in a few months to track my osteonecrosis (avascular necrosis) and he said: “don’t worry I can order those and the radiologists at the local hospital will be able to read them just fine.” I didn’t say anything in response, because frankly I didn’t want to be rude.
The truth is radiologists have failed me time and time again during my journey with ON (AVN) and I don’t trust them anymore. Radiologists don’t seem to be trained to pick up ON (AVN) on an MRI, X-Ray or Bone Scan.
The first report for the first MRI I had taken a year ago, when I started having pain, said there was nothing wrong with me. The second report of an MRI with and without contrast, at a different hospital, said there was no sign of ON (AVN). A third report from a bone scan performed at yet another facility said I might have bone cancer. I was getting desperate and went to Stanford Hospital where I was told there were some of the best radiologists in the world. The Stanford radiologists reviewed both my MRIs and my bone scan and not one of them picked up on the fact that I had osteonecrosis (avascular necrosis).
I didn’t believe any of the reports (I knew something was seriously wrong) and I begged to see an orthopedic oncologist who I hoped would help me. He took one look at my MRIs and knew immediately that I had osteonecrosis (avascular necrosis). When I had follow up MRIs, four months later at the hospital near my parents house, their radiologists misread my osteonecrosis as osteoporosis.
Would I put my disease in the hands of a radiologist? Absolutely not!!!! The most important thing to do while calling around for orthopedic doctors is to first ask if they A) know what ON (AVN) is and B) can they read it on a scan. I have read countless stories on various ON (AVN) support groups where people’s ON (AVN) was misdiagnosed for months because of the negligence of radiologists and doctors.
Osteonecrosis (Avascular Necrosis) is not a disease where time is on your side. If you don’t feel confident that your doctor knows what he is doing, find another doctor! You have to act now, to at least try to save your joints and stop the progression of this disease.