Has your daughter needed a shunt? I am 23 and have ACM2 (i believe)
i had the decompression surgery when I was about 10. I have had many
revisions and then finally shunt removal (VP shunt)...I have a
syrnix that goes to c3 I believe. It's been so long since I have had
to deal with CTs and MRIs that I can't remember exactly...Is it
possible for you to maybe look in the Nashville area, I think they
have pretty good drs and hospitals there. And I don't know where in
Ky you live but also I know for a fact that Chicago and St. Louis
both have excellent drs. I am from KS... :)
Maureen




--- In spinabifidacentral@yahoogroups.com, "gagrits96"
<jchughes@c...> wrote:
> My daughter is 20 months and has spina bifida, as well as, ACMII.
> Her spina bifida is not what causes all of her problems. It is her
> chiari. She was decompressed at 6 weeks of age and then had a
> second decompression at 8 weeks of age. The decompressions helped
> her Brady spells. However, we continue to need oxygen when we sleep
> due to obstructive apnea (low tone), feeding issues (g-tube was
> placed May 26, 2005), and trunk and head control. Carsyn is very
> hypotonic due to her chiari. She does have a syrnix, but the
> Neurosurgeon says it is not causing any of her problems and it has
> not changed since birth. There response is, "There is nothing else
> we can do right now. She just has a bad brain."
>
> My question or plea is for advice. What do we do as parents? Do we
> accept that answer or keep pushing or looking elsewhere for
> additional treatments? We want so much more for our little girl.
> Is it possible or do we need to just accept what challenges God has
> given us and do the best we can?
>
> I have read a lot about other Dr.'s here and was wondering if
anyone
> elses child has similiar characteristics or symptoms. Does anyone
> recommend us going elsewhere for treatment or consultations. We are
> currently treated in Cincinnati, OH. We live in Kentucky. We would
> love to hear any suggestions that could possibly help Carsyn. Thank
> you so much for everyone's guidance.
>
> Celena Hughes