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congenital non-union of the C1 vertebrae

My 9 year old was just diagnosed with congenital non-union of the C1 vertebrae.  One doctor told us he would be fine but no contact sports.  Another is telling us that he may need surgery and wants to refer us to Philadelphia to a Children's hospital.  Can you give me some information on this conditiona and the severity of it.  I'm afraid for my son to even sleep on the top bunk of his bunk bed - I know I am probably overreacting but am not getting answers
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Our son also has the non union of the C1.  Please let us know your outcomes.
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Avatar universal
I have also been dxed with non union of c1 verterba. I had it all my life, but just found out at 40 I had this defect. It has been causing me alot of pain, headaches, and neck weakness.
Surgery was recommended. I also do not have much information on this subject.
Please let me know your findings, if you can get any.
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