K.W. asks from Cumberland, MD on March 30, 2010
Chiari 1 Malformation
My son does not have Craniosynostosis he has Chiari 1 Malformation.
This is when the cerebrulum tonsels hang down into the spinal canal.
Does anyone know anything about this? Or the surgery to correct it?
We goto Morgantown tomorrow to get more information. I want to
be prepared.
So What Happened?™
They are not going to do surgery, they want to wait until he is older to see whether it will affect him or not.
He has more fluid in his spinal cord than normal but they are just watching him for a while to make sure it doesnt
get worse.
More Answers
C.W. answers from Shreveport on March 30, 2010
http://www.asap.org/index.html
This is a wonderful site that has great info. Right at this moment it is offline cause they are revamping the site but in about an hour it should be back up and running.
I.M. answers from New York on March 30, 2010
Hi,
yes I know about Chiari Malformation because I have it and so did my cousin. My cousin had surgery about two years ago and she is doing well. She can do a lot of things that she couldn't do before. The only difference is that we are both grownups and I'm not sure how old your child is.
The surgery will definitely help him, but if I'm not mistaken if he is very young he might need future surgeries as he grows older and his head grows.
I had a procedure done in December to see if the pressure of the head was high so I could get a shunt instead of the chiari decompression surgery. But the pressure was pretty normal and did not merit a shunt, so my next step would be surgery.
I have a doctor's appointment to discuss surgery, I've been postponing it because my husband had been without work for a very long time and my income is the only steady one. If I have surgery it will put me out of work for a while, any where from 4-6 months. I'm standing and believing for healing :) so I have to call him and see if he wants me to have another MRI since the last one I had was done last year in January.
If your son's symptoms are very severe I would suggest you go for a second opinion before you do surgery.
Please email me. Blessings.
I.
D.P. answers from Pittsburgh on March 30, 2010
Here's one of many informational sites:
http://www.cincinnatichildrens.org/health/info/neurology/...
Good luck. I'll keep you and your son in my prayers. :-)
R.J. answers from San Diego on March 31, 2010
My mechanic's daughter just had the surgery to correct it last year (after years and years of terrible migraines... she's a teenager).
What they did was to grind the skull down on the inside so that there was more room for her brain and then to create a skin "sling" as a double protectant to keep her brain up where it belongs.
She's doing fanatically. Short recovery time, and only 3 migraines in the past 18 months. (Whereas before she'd get between 4-10 a week)
Email
facebook
twitter
StumbleUpon
digg it
kirtsy
Technorati
reddit
del.icio.us
blinklist
simpy
