I am sorry I have to respond to this. I had a friend that is no longer
with us because of a doctor not at Duke but another hospital that did
not do a surgery on a patient that was NOT problems but the doctor did
not find anything wrong with my friends shunt and it was indeed her
shunt. She had a stroke and was under 35 years old. She was in college
about to graduate and was going to be a Psychologiest. She was having
headaches but the doctor told her it was NOT HER SHUNT and now to day
she is 6 FOOT UNDER So please for your child even if she is not having
problems please have her checked out to see if she needs a shunt
because she could really need one and its just not showing up and if
your child has never had a shunt she or he may not know what it feels
like to be having a headache that requires a shunt. I dont want to see
you loose your child because of a shunt malfunction or a wished I had
put a shunt in or she or he would still be with us today. I also want
to add if you dont get a shunt in soon enough it could cause your
child to be mentally retarded. I am sorry about the way I put this but
I have lost a great deal of friends because of surgery or one thing or
another because it was not done soon enough. I am an adult with spina
bifida and I have been through alot myself. I also know the importance
of seeing a doctor regularly and making sure my shunt is work
correctly among other things in the body with a person with spina bifida.







--- In sbaofnc@yahoogroups.com, cynthia teresa <cteresausa2003@...> wrote:
>
>
>
> 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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