I went to the Denver VA on Thursday morning. I finally got to see an orthopedic doctor. It was just for my shoulder and not my EDS case. I explained to the doc about my condition and he had never heard of it, big surprise. He said that he would be looking into it and see if there was something more he could do.
He checked my good shoulder first. He asked if I was sure that it was not the bad shoulder. He could not believe the laxity in my joint. Then he went to the bad shoulder. He popped it out without even trying. It completely shocked him and hurt me. It was immediately popped back in. As the doc examined my shoulder further, he told me that he could actually feel the damage to the cartilage in my shoulder. He ordered an MRI.
The doctor suspects that I will be having surgery on my shoulder before the end of the summer. Ouch, not looking forward to it. Really, we will have to wait and see what the MRI shows.
At least someone is listening to me about the symptoms of EDS. Someday I am going to figure out how to make someone put it all together for me.
I am concerned about the possibility of you having surgery by an orthopedist who is well meaning, but not knowledgeable about EDS. You might want to go on some of the EDS boards and try to find a doctor who has done surgery on people with EDS. As I understand it, shoulder surgery is not done quite the same with EDS. You could end up having the surgery and dislocating within a year or so because it doesn't hold. Don't mean to scare or depress you, but this has been the experience of many people with EDS with surgeons who don't understand EDS.
ReplyDelete