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Sprengel's deformity

AnonymousUserAAnonymousUser Posts: 49,671
My daughter is 6 years old and just diagnosed with Sprengel's Deformity. We are doing some research and looking into doing surgery, which seems rather extensive. Does any one have any feedback on this condition, the treatment/surgery and success? Any idea how beneficial the surgery is overall for years after it has been done?


  • I also have the sprengels deformity. I do not know how extensive your daughter's case is, but personally, my condition is very mild. Almost no restriction of movement, only the cosmetic difference of shoulders. I have never had a treatment for my sprengels deformity and it has never bothered me. I am now fixing to be 21 and for about the past year, my condition has caused back, neck and lower head pain and headaches on a pretty regular basis. Especially from sitting. I am now also considering the surgeries, however they do not recommend the surgeries for patients over about 8, 13 max. The connection of the higher shoulder plate, whether it is connected by bone or tissue, puts strain on areas not designed to support that kind of strain. I would really consider the surgeries and do plenty of research. And finding the right specialist makes all the difference in the world, being as not many healthcare professionals are familiar with the deformity. Hope this helps! God bless with whatever your decision!
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