I am 32 yo with ROBPI. I have never been officially diagnosed though, but I can't deny the symptoms (can't raise arm above head, can't place arm fully behind head or behind back, can't rotate forearm to have palm face up, and can only extend arm to a little over 90 degrees). My mother never knew what injury I had and was never told. When born, my affected right arm was completely paralyzed. I had to stay extra days in the hospital for evaluation. when I finally went home, I had a home health nurse who came to help me with PT. My mom tells me it did wonders and brought life into my once little dead arm. But around 2 yo or so, the arm began showing signs that all wasn't well. I began to have difficulty straightening it and my arm was becoming stiff and mobility wasn't great. I did exercises with weights and my mother massaged my arm nightly up until I was about 9 yo, but to no avail. At that time we saw family doctors but no one knew anything. I saw more doctors, had tests done, but the years just marched on with no answers... not even a name for what I had.
I am grateful for the mobility that I do have. But I always wondered if something could be done to increase it. And now with a 2.5 yo and 4 yo, I'm beginning to feel the effects of my limitations. This site has give me hope that I might have options.
I have contacted Dr. Grossman in Miami (I have family there so it would be the easiest first step for me). He wants me to come in for a consultation. I'm a bit nervous, and excited, as this is the first time I will see someone who KNOWS what may be wrong and if anything can be done. I just want to know if I have any options.
Anyway, thanks for letting me get it all out. It's the first time I've been able to share my story and actually have a name for what I have.
