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Experience with Cortext Dysplasia/Cortical Dysplasia & Surgery?
Wed, 08/09/2006 - 23:52Comments
Cortical Dysplasia & Surgery?
Submitted by rpicc4 on Wed, 2012-09-05 - 16:34
It's so good to find this forum and know that we may be few and far between but we're not alone. My daughter had surgery for a right frontal cortical dysplasia that was causing partial focal seizures. In 2007, they removed the lesion and she was seizure free for one year.
Isabella is a beautiful, bright 14 year old now in middle school...and her seizures are now out of control again, meaning when they came back they were mild and only at night or when waking. Now she;s having 12-20 a day (during the day) Hard thing for a middle school kid to cope with but she does it brilliantly.
We had a MEG done recently and I'm chasing down the results. Another surgery may not be possible because of the proximity of the lesion to her motor strip. If it is possible, it will be complicated by scar tissue from her first surgery.
I want to get the best advice possible. Does anyone know which surgeons or centers have the most experience in Cortical Dysplasia? I have read about Childrens Hospital in Philadelphia and Cleveland Clinic, and in an earlier post someone mentioned Univrsity of Chicago.
Also has anyone had any experience with a second surgery?
It's so good to find this forum and know that we may be few and far between but we're not alone. My daughter had surgery for a right frontal cortical dysplasia that was causing partial focal seizures. In 2007, they removed the lesion and she was seizure free for one year.
Isabella is a beautiful, bright 14 year old now in middle school...and her seizures are now out of control again, meaning when they came back they were mild and only at night or when waking. Now she;s having 12-20 a day (during the day) Hard thing for a middle school kid to cope with but she does it brilliantly.
We had a MEG done recently and I'm chasing down the results. Another surgery may not be possible because of the proximity of the lesion to her motor strip. If it is possible, it will be complicated by scar tissue from her first surgery.
I want to get the best advice possible. Does anyone know which surgeons or centers have the most experience in Cortical Dysplasia? I have read about Childrens Hospital in Philadelphia and Cleveland Clinic, and in an earlier post someone mentioned Univrsity of Chicago.
Also has anyone had any experience with a second surgery?
Experience with Cortext Dysplasia/Cortical Dysplasia & Surgery?
Submitted by Declan on Thu, 2011-03-03 - 02:29
My sister Saskia had surgery when she was younger, she is now 14, the surgery didn't have much effect. Back then we thought that a good level in the future for seizures would be 3 a day, and that is what we aimed for. Now she has that many in a month, she is great now.