If you are reading this site you are probably already very familiar with the feeling that no one cares about what’s wrong with you. Being frustrated comes along with the territory when you have a condition/disease that is not well researched or well funded and one that most orthopedic specialists known little to nothing about.
I went to a new orthopedic surgeon, Dr. Brian Feeley, here in San Francisco yesterday who was recommended to me by my GP. As I’ve mentioned before, I can’t have surgery because of where my ON (AVN) is located, but I need someone to order me MRIs so I can track the progression, or hopefully track the continuing regression, of my disease. I met with the doctor’s orthopedic surgeon in training, he was a nice guy, they are usually the nice guys. The surgeon walked in with a smug look on his face and the first words out of his mouth were, “what do you expect me to do for you?” (this was a better response than from Dr. Javad Parvizi at the Rothman Institute in Philadelphia who said “you’re wasting my time”) however, his comment was condescending and reminded me yet again of what little interest orthopedic doctors have in osteonecrosis (avascular necrosis).
I told the doctor all about my disease, where it was, why I had it etc. He didn’t care to hear about Dr. Glueck’s research, he didn’t really care to hear my story at all. I told the doctor it was a debilitating condition and I might as well have been talking to a wall. He told me I probably knew more about my disease than he did. That was very comforting. He advised I go to a tumor specialist. I said there was no point in going to a tumor specialist because I don’t have cancer and I’m not going to another orthopedic specialist because they can’t even read ON (AVN) on an MRI.
He agreed finally to order my MRIs, but had no interest in me or my case. I walked out of the office and felt deflated and upset. I’ve wasted so much time meeting doctors who have egos bigger than the North American continent. I went home and emailed Dr. Glueck and asked why orthopedic specialists don’t know about his clinical studies. I asked how can I better spread awareness so that orthopedic doctors take an interest in and start educating themselves about ON (AVN).
Dr. Glueck’s response was “Keep doing exactly what you are doing. We have published 30+ peer reviewed papers in the premier Orthopedic journals, Journal of Bone and Joint Surgery and Clinical Orthopedics, to educate the orthopedic community, and we have written a chapter for the AAOS (American Academy of Orthopaedic Surgeons) definitive book on osteonecrosis and are writing another chapter for a new version of that book.
Folks like yourself play a crucial role in educating the public, who, in turn, will force the orthopedists to learn.”
The only tool we have to fight against the ignorance and the apathy is our own determination. We have to continue to challenge our doctors when they dismiss us and keep pushing for answers.
Note: I linked off to Dr. Feeley and Dr. Parvizi above because I don’t want anyone else wasting their time with doctors who don’t care. I’ve never mention the names of doctors I’ve had negative experiences with before, but I’m going to start.
Osteonecrosis (Avascular Necrosis) 
Keep up the great work – it is appreciated! 🙂
You sound like a plant for these doctors- no doctor I’ve ever known would ever speak that way to a patient. And why can’t you get surgery exactly?
What do you mean like a plant? My AVN is in my femurs in patches. It hasn’t reached my joints. I write about that in my site. Those doctors did speak to me that way. My Parents and my Godfather (who is a doctor himself) was in the room.
Do you have AVN? Or are you upset u wrote about my true experiences with doctors.
Reblogged this on LUPUS CHRONICLES and commented:
All of us with lupus, osteonecrosis from lupus- or any other chronic illness have run into the physician who SEEMS to take little interest in our discomfort. Not only is a physician’s perceived lack of interest frustrating (because this makes us think he doesn’t care) but our discomfort isn’t helped.
I said SEEMS, because the physician does care: physicians do care. But because medical school education isn’t loaded with information on the treatment of this rare condition (in this case osteonecrosis), finding a physician who will take innovative approaches to the treatment and management of this rare disorder, is asking that physician to admit “I DON’T KNOW.” That runs contrary to human nature.
This is one person’s attempt to find someone knowledgable about the pain of osteonecrosis and it’s treatment.