First chiari question--heredity

[Guest guest]

Hi all,

First, let me say that I've been signed up for just over a week and have

learned so very much just reading everyone else's notes! I wish I'd know

about all of you months ago.

I have a ten-month old daughter, Reesa, who has spina bifida, ACMII,

hydrocephalus/A-P shunt x1; she was decompressed at age 2½ months due to

vocal cord parallysis--which required a tracheostomy. Initially it appeared

that the decompression didn't work, and we were told she would have the

trach for 2-5 years.

Now, almost nine months later, we are blocking trach and intend to have her

decannulated by the end of September as her vocal cords were normal by

bronch exam in July. Dr. Frim (UCCH) is a godsend!

Anyway, since reviewing your messages, my question is this: does anyone who

has a child with ACM suspect that they also have it? After seeing all of

the symptoms, I'm wondering if I have it too and didn't know it until

now--migraine headaches with auras, blurring/double vision problems, passing

out, strange sounds in my ears, etc. Has anyone sought testing to have it

confirmed, or would it be a waste of time trying to convince someone to do

the MRI?

Any feedback would be great--I look forward to hearing from you!

Jacki Athey in IL

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