Matthew,
Went up to NYU on 34 ST in Manhatten three times in 6/12.I've only been going
there since 2010 & seeing Drs Orrin Devinsky & Daniel Friedman.It's a great
place to go even as I'm from Baltimore. Timothy Baldwin
________________________________
From: Matthew <peewee529@yahoo.com>
To: epilepsy@yahoogroups.com
Sent: Thu, July 19, 2012 10:38:25 PM
Subject: [epilepsy] daughters symptoms, everyone's thoughts please
hi all. i am new to this group. i have been a part of the WACMA group on yahoo
for about six years now and just recently learned about this one. WACMA stands
for World Arnold Chiari Malformation Association. My daughter is currently dx
with chiari type 1, left temporal lobe epilepsy, and retro-flexed odontoid
process. i will try to keep this short. Chiari is a structural abnormality of
the cerebellum, in particular the tonsils which hang down from it. When you have
chiari your tonsils/ventricals herniate into the foreman magnum which is the
hole in the base of the skull which is only intended for the spinal cord to be
in. This condition can cause literally anything since it is effecting your
entire central nervous system. So far no research has proven a link with chiari
and seizure activity, however i find it hard to believe there isn't since so
many have both. We have spent the last 6 years traveling the us to see the best
of the best for my daughters chiari. All this time thinking that is what is
causing her issues. We are starting to realize that it may not be. She just had
a nuero psych eval done. He was wonderful. It was like he had lived with us for
the past ten years. We have always seen a lot of mood issues. She goes from a
happy good mood to out of her mind angry with the flip of a switch and back
again. Sometimes she will be sooooooooooooo angry for a week straight about
nothing. We started on trileptol after the initial seizure. That made her a
zombie so we switched to lamictal. She recently had a sleep study done as well
since she has never slept her entire life. insomnia, nightmares, etc... Sleep
study showed activity in the left hemisphere. no surprise there. Been telling
the doctor for years there is something wrong. Few weeks later a sleep deprived
eeg also showed activity. These are the only ones in the last 6 years that have
not been clean. Why now? puberty maybe? I am more than willing to travel to see
the best. Has anyone been to the NYU Epilepsy center in Manhattan. She ha! s a
chiari doc on long island who is going to have his neurology team review her
case and give us their input. It will be helpful to have a doc thats not of the
wait and see mindset. Any other doc ideas?? The info i have gotten from the
WACMA community has been priceless and i am hoping to get the same here. I left
a ton out, there is much more to this story but wanted to keep it as short as
possible but still get enough info in. Thanks for taking time to read this and i
cant wait to read your thoughts and ideas. hope you all have a good and restful
evening.
matt
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