Veptr surgery

[Guest guest]

How many parents on this list have a child who has received the Veptr? If so, what hospital was the surgry done at, and who was the doctor? Was this surgery successful, was there complications, and how long of a hospitalization did the initial implant require? Have you been happy with the VEPTR for your child? Would you do it again? If given the choice of having your child receive spinal growth rods or the Veptr which would you want for your child and why?

My daughter suffers from a mild degree of thoracic insuffciency secondary to a 50 degree scolosis and hypotonia, which has resulted in restrictive lung disease, and a constricted chest wall. The Titanium Rib Project in San evaluated her and have recommended the VEPTR however I am having a time getting her pediatric orthopaedist in Atlanta to agree to the VEPTR. He still thinks that spinal growth rods would be the best treatment for her.

I was just wanting some parent input from parents who have more experience with VEPTR or spinal growth rods than I do. This is such a hard decision to make b/c if our Atlanta doctor does not agree to the VEPTR then I have to decide if I want to go ahead and travel to Texas every 4 to 6 months for the next 5 to 7 yrs until she is old enough to have her spinal fusion, or do I want to take her to a Shriner's Hospital for a third opinion. I took her to the doctor that developed the VEPTR and he says VEPTR is the best treatment for her medical condition, however why wouldn't another pediatric orthopaedic doctor who is FDA approved to preform the VEPTR agree? Have any of you ran into this problem?

Atlanta is so much closer to me than San , Texas.

Also has anyone heard of a little girl named, Anslee who recieved the VEPTR in San and wound up with spinal cord injuries and paralysis from it? I would really like to talk to her parent/s if possible. I don't know her last name but do know that she is from Georgia.

Deborah Salter