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chiari malformation

Organized by: denise valenti

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My 15 year old grandson has chiari malformation which has to do with the brain . He had surgery at the Hershey Med Center, last october and the procedure was not done right. The in doctor was suppose to put a piece of mesh to keep everything in place and we just found out it wasn't done. we have been going to chop in Phila. The doctor at chop is recommending a second opinion and the insurance said it is not medical necessary. His parents want to take him to a doctor in New York ,which all he does is this procedure. My grandson weighed 135 lbs. after the operation he was throwing up everyday a couple a times a day . He couldn't keep even water down he ended up weighing 87 lbs. he was dehydrated so the med center admitted him for a couple of days. The doctor that operated on him didn't even want to see him. He can't go to school and he can't even be a 15 yr. old kid. He is still throwing up and can go days without eating. He was admitted to chop for 2 weeks to get nutrition through interveinous. He has been on steroids a couple times just so he could eat. When they did this operation they shaved some of his bone in his head and were suppose to remove the tonsils that hang down and caughterize the brain so that the cerebelum stays put, well that wasn't done right either. He made the hole wider in the brain so the liquid could flow to the spinal cord where it belongs, that wasn't done right. S o my grandson has to suffer everyday and still can't go to school or do anything else but sleep. I just don't understand the insurance saying it is not medically necessary. He has to be able to go to this doctor in New York so he can be a kid again. Even the doctor in Phila. said he needs another opinion. What does that tell you. please help them. Than You.


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denise valenti

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