Hello,
I was just searching through this new forum for congenital scoliosis information. I am the mother of a 35 month old boy with severe congenital scoliosis. He has about ten vertebrae which are not completely formed, ie hemivertebrae. So far we are just bracing as our doctor is monitoring research on the Titanium rib procedure that Carmel, also of this forum, has talked about. I think with my son that more than the rib will be necessary. He is, to make things harder, extreeeeeemely small for his age. I mean, we're talking right off the lowest percentile scale! Anyway, there's not much flesh to stick a rod or a rib into and that was one of the reasons that our doctor and the Seattle Titanium Rib team didn't think my son was a good candidate at that time.
I'm going to post in the research forum if I can, but I am interested in the very leading edge therapies including transplanting bone growth tissue to the affected vertebrae, building up the affected vertebrae with synthetic supporting materials, variations on external support for the spine, etc. I think my son may need a multipronged approach.
I'm interested in other parents' experiences, fears, thoughts, etc.
Susan
I was just searching through this new forum for congenital scoliosis information. I am the mother of a 35 month old boy with severe congenital scoliosis. He has about ten vertebrae which are not completely formed, ie hemivertebrae. So far we are just bracing as our doctor is monitoring research on the Titanium rib procedure that Carmel, also of this forum, has talked about. I think with my son that more than the rib will be necessary. He is, to make things harder, extreeeeeemely small for his age. I mean, we're talking right off the lowest percentile scale! Anyway, there's not much flesh to stick a rod or a rib into and that was one of the reasons that our doctor and the Seattle Titanium Rib team didn't think my son was a good candidate at that time.
I'm going to post in the research forum if I can, but I am interested in the very leading edge therapies including transplanting bone growth tissue to the affected vertebrae, building up the affected vertebrae with synthetic supporting materials, variations on external support for the spine, etc. I think my son may need a multipronged approach.
I'm interested in other parents' experiences, fears, thoughts, etc.
Susan
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