I also had a bad impression about some doctors in Duke. My child also have a
Spina Bifida, she will turn 4 this coming May 2007. When she was 2 months old,
her doctor in Carolinas Medical Center in Charlotte, NC want to do a Cranial
Decompression because he said that she has a Chiari Malformation II, so, we
asked for a second opinion from Duke, sent my child's records and CT Scan and
MRI's, to make the story short, the neurosurgeon there said that we need to let
our doctor here in Charlotte do the surgery As soon as possible or else it will
damage my child's brain etc (he didn't even asked to see the baby, he just
decided to say do the procedure because he said that my child's doctor is known
for being a good doctor). Anyway, we did not do what they want to do because we
feel that the child doesn't need it because she's not symtomatic, even if she
has it. Until now, she's ok. She's one of the smartest children in her school
(She's in Pre-K). They even want to put a shunt
on her when she was 10 days old because she's a SB baby but we didn't let them
put one, until now she's still shunt free.

Sometimes, as a parent, we also need to think slowly and won't let what the
doctors want to do to our children. Yes, they have a SB it is possible they need
the surgery right away but sometimes if we know that the child is not
symtomatic, we need to decide and tell the doctor that we want to wait a
little bit and see how the baby does, this is what we do to our child.

Just want to share my experience, just an information for new parent that
doesn't know a lot about SB.


Thanks,
Cynthia
Emily (L4-L5, cath every 4 hrs. shunt free, walking with a walker and without
walker)

Charlie Johnson <cmjcbt2@...> wrote:
I just noticed your response about Duke's Clinic, we have had an
excellent relationship with Duke regarding our daughter's (6 years) issues with
Spina Bifida and they have always been willing to help make sure everything was
going okay. I was just curious as to the problems you were having, because
that's odd.

Stormie <counselorwillingham@...> wrote: Does anyone know if there is a
Spina Bifida Clinic in Greenville NC?
I am presently being seen at Duke's Clinic but quite frankly I a have
been unimpressed with the care he has recieved in comparison to the
care he had when we were in Tn at Vanderbilt's clinic. I have heard
that there may be a clinic in Greenville and would like to get a
contact number to see about having his care transferred there.
>
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Charlie Johnson
cmjcbt2@...

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