[tri-med] Re: chiari malformation

Hey Ceci,
Rebecca still has a syrinix even after the surgery, but it has decreased!
Rebecca had a speech therapist that has a Chiari, they found it when she was 
seventeen, she is in her thirtys now and it has never bothered her so she just 
has an MRI every year or two to keep a watch on it and so far so good.  So 
maybe it will be the same for your husband!!:)
Cindy, mom to kayla(14) T13 and rebecca(3) T13
John and Ceci DeGenova <jcdegenova@xxxxxxxxxxxxx> wrote:
Cindy, it's funny this topic has come up because I have been researching
this myself. Some of you "oldies" on the list may remember that last
summer, Joe got hit on the back of the head with a golf ball. The good news
is that he did not suffer any permanent damage. However, when his
neurosurgeon did an MRI of his spinal column because of some quirky symptoms
Joe exhibited, he found a syrinx, which is a fluid-filled cavity in the
spinal column. It just so happens that Friday we are going back to the
neurosurgeon to review MRI's done this summer to follow up on this issue.
So, I've been doing a little searching. I have not seen anything about it
being tied to Trisomy 13. I quote from the following website:
http://cpmcnet.columbia.edu/dept/nsg/PNS/ChiariMalformation.html

"Also known as Arnold Chiari Malformation, this is a benign structural
problem affecting the cerebellum. Most children with these malformations who
do not have spina bifida will have the form known as type I. Essentially
there is extra cerebellum crowding the outlet of the brainstem/spinal cord
from the skull on its way to the spinal canal. This crowding will commonly
lead to headaches, neck pain, funny feelings in the arms and/or legs,
stiffness, and less often will cause difficulties with swallowing or
gagging. Often the symptoms are made worse with straining. When the
diagnosis is suspected the study of choice is an MRI scan. These
malformations are very difficult to see on CT scans and impossible to see on
plain x-rays. Sometimes these malformations can be made worse by, or can
cause hydrocephalus. In addition they can often lead to fluid filled
cavities in the spinal cord known as syrinxes (syringohydromyelia)."

Keep your fingers crossed that we come back with good news!

Take care,
Ceci, mom to angel Anna, t-18


-----Original Message-----
From: cindy carter 
Subject: [tri-med] chiari malformation

Does any one else have a child with a Chiari Malformation?
I have never read about it being a problem with T13 kids.

Cindy

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