Re: New to group & question/Jolene

[Guest guest]

,

So your son did have posterior fusion...in that case, he could indeed have

crankshafting.

It happened to my niece who is also disabled with Rhett's syndrome and

severely retarded from oxygen depravation at birth. A secondary condition with

Rhett's is scoliosis. She, too, is unable to speak. At five she was unable to

walk and had the front ribs protruding from scoliosis. Shriner's operated

and did posterior fusion. She was straighted to 20% which was astounding but

within months she started getting a back left rib hump. It was indeed

crankshafting. My sister felt betrayed by the specialist. He apparently knew

that

might happen but felt the fusion was absolutely necessary. Her hump continued

to grow until she had anterior at age 13. She is now 27 and doing well. She

is still in diapers, but walks and communicates in her own way very well.

Have hope. Jolene

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