I Have Sprengel's Deformity
Hi, I just found this group-I have never known any one else with sprengles, so I was surprised! i am 58 (F) and have right sided sprengels and scoliosis. My collarbone etc are also misaligned. When I was in my 20s, I joined the Army-during the physical, the Dr. just seemed bored and passed me through. I became an MP and a dog handler. From there I became a (civilian) cop and k9 officer until the mid 1990s when I had a work related injury to my shoulder. I saw an orthopedist who was really inerested in my problem with my sprengels. I was having very bad neck pain because my shoulder blade was so crooked and my spine so curved that they would crash into each other every time I moved my arm up. He did a little research and said he was willing to try to do a surgery to reduce this problem even though he really couldn't find any info on it. We tried it and he ended up cutting off the bottom of my shoulder blade and releasing the muscles that attached it to the spine. It was a somewhat difficult recovery (the frozen shoulder didn't help) but I think it was well worth it in the long run. My neck pain is significantly reduced and my shoulder has dropped down a LOT. I still don't have any more arm function than before-can't raise it very far in any direction but the rest is great. I also had to have impigement surgery on both shoulders (frozen shoulders once again), but that's all resolved as well. My neck is much less painful but of course, I don't have a lot of movement still and it doesn't take much for it to go "out". I use a tempurpedic pilow but it's the square type that gives me a lot of support. I think that besides the surgery the thing that has helped me the most believe it or not is martial arts. I've been involved since the 80s and it keeps me as flexible as I can get. I have to fake some stuff because of the lack of arm motion, but we've all learned how to do that! I guess I got lucky to find a surgeon who was willing to be creative-he told me that the surgery I should have had as a child would have been too difficult to do as an adult but was willing to be creative. He had to write a letter to my ins. co. because they had no category for the surgery. I don't know if this will help anyone but thought I would jump on and share since there donn't seem to be a lot of us around and everybody's experience is so different. Good luck, everybody!