Tuesday, October 13, 2009

We're afraid of losing this quality of care?

Let me say a few things about the standard of health care in America.

I have CRPS (Chronic Regional Pain Syndrome, formally called RSD). Granted it is not a well understood disease, but compared to when I was diagnosed 19 years ago to today, general knowledge about CRPS has increased by leaps and bounds. Some doctors even call themselves specialists.

I have seen these specialists. I have been to Johns Hopkins and Stanford- both supposedly offering the highest level of care. But it wasn't until a pesky pain I have been dealing with in my foot for years finally got out of control, that someone took a basic x-ray of my leg. My family doctor told me last night that I have such severe Osteoporosis in my left leg that I could break my foot just by walking around on it. This could have been useful information to have before now. I probably have a stress fracture in my tibia, but I won't know until the MRI tomorrow.

I knew from poking around on the internet that Osteoporosis was a common problem among people with CRPS/RSD, but I figured that if this was really a concern for me, one of the many doctors I have seen would have checked for it. I even had a terrible case of it right after my accident and shattered my ankle in three places because I was trying to keep up with my friends. I have told that story to every doctor I have seen about my leg, but none of them ever checked to see if the Osteoporosis was still a problem.

One dumb x-ray a long time ago could have spared me this pain, hassle, and possible surgery. I guess what I'm saying here is that YOU are in charge of your own health care. Be educated and ask about possible complications. I have always worried about offending my doctors by mentioning research I have found on the internet, but no longer.