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 has 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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