I'm gonna agree with Carrie, Tammy I think you would
be doing the right thing by shunting asap if they say
its necessary. I have been blessed I had mine put in
at nine days and then again at 6 months and that one
worked until I was 17. I'm 33 years old now, I also am
a L-4, L5 sb patient. I'm from Louisiana. Hope this is
some help to you. Nikki Wiley
--- cari minsky <carester2002@...> wrote:

> Hi Tami! My name is Cari i'm 24 years old with sb
> L4-5. I would recommend getting the shunt if a
> neurologist says your daughter needs one. There's a
> lot of risk that can come from not getting one when
> it's really needed. Hydrocephalus if left untreated
> causes brain damage and in some cases if left
> untreated can cause death. I've done little research
> on the in-utero surgery but from what i understand
> there are no guarantees as to it's effectiveness.
> I'm sure in some cases the children havent needed
> shunts but typically about 95% of spina bifida
> patients have hydrocephalus that need shunting. I've
> had a few revisions over the years but no major
> problems. I know when it's a shunt problem by the
> way i feel so i'm able to get it fixed quite
> quickly. Hope this helps. ~Cari
>
>
>
>
>
>
>
>
>
>
> tigtam <tigtam@...> wrote:
> Hello, All
>
> I was needing some advice from those of you who've
> been at this
> longer than I have. My daughter is 4 months old (2
> months premature)
> with SB, in-utero repair with the MOMS trial at
> Vanderbilt. She has
> enlarged ventricles, Chiari, etc., but not large
> enough thusfar to
> need a shunt. When we went home to Kansas and had
> our first spina
> bifida clinic visit, the neurosurgeon there said
> she needs one. I'm
> confused that one set of docs in Nashville is more
> conservative and
> the ones here are more aggressive on shunting. One
> of my hopes with
> the MOMS study was that it would eliminate or
> reduce her need for a
> shunt. I don't want her to have to go through
> another surgery (and
> likely several more, as I've heard there can be
> problems as well as a
> need for revisions as they grow), and I don't want
> to hurt her brain,
> but if she needs it, I don't want to deny her.
> Anyone willing to
> share their shunting stories (good or bad) would
> you please email me
> personally? I want to learn more about the pros
> and cons before I
> make the decision. Any advice about the surgery
> would be helpful
> too, i.e., how to select a neurosurgeon, what
> questions to ask, what
> symptoms to look for in making the determination to
> shunt, etc.
>
> Thanks,
> Tami
>
>
>
>
>
>
> ---------------------------------
> You rock. That's why Blockbuster's offering you one
> month of Blockbuster Total Access, No Cost.
>
> [Non-text portions of this message have been
> removed]
>
>


Nikki Wiley



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