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Experience with Cortext Dysplasia/Cortical Dysplasia & Surgery?
Wed, 08/09/2006 - 23:52Topic: Surgery and Devices
Does anyone have any knowledge or experience with cortext dysplasia or cortical dysplasia? This is what my 10 yr old son has now been diagnosed with pending an mri - he recently had a pet scan that the drs feel shows this. He was diagnosed with frontal lobe epilepsy 4 yrs ago. He is now a surgical candidate and I am wondering if anyone has went through this already and what their outcomes have been like. Thank you very much! Jack's Mom
Comments
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Submitted by mlgusto on Fri, 2006-12-22 - 10:11
Hi Shannon,
We are very interested in information regarding surgery for cortical dysplasia. Our son is 8 and has had complex partial seizures since he was almost 3. The initial MRI was normal and he had another done last year that was read as normal. Over the past 6 years he's been on approximately 11 medication or combinations of medications. He is well controlled for 3-6 months and then the seizures start again. Like those I have read about on this post, his are very mild and often missed by those who don't know what to look for, but at the worst, he has had up to 100/day (most at night).
We recently took our son to see another neurologist/dietician team in Chicago with experience in the modified Atkins for seizures. In her review of his last video EEG and MRI, she found an area of cortical dysplasia that appears to match the area of seizure activity in his anterior right frontal lobe. A repeat MRI confirmed this and now we are set up for a new video EEG and a possible meeting with a neurosurgeon.
We have had our son treated in Chicago all along and absolutely love our neurologist at University of Chicago. We have also been very impressed with the team who actually found this area of abnormality at Children's Memorial. If all future tests support surgery and we decide to do it, our dilemma is in where follow through with it. Each epilepsy center seems very qualified and we have a lot of confidence in both of our neurologists. Did you do research on who has more experience with this? Do the neurosurgeons at U of C strictly treat children? How many do they do a year and what are their success rates? We know Childrens Memorial does about 30/year and has four pediatric neurosurgeons, with two of them who strictly do epilepsy surgery.
Any info you have would be greatly appreciated. We have absolutely never looked into surgery as an option. We always said absolutely not when it was suggested, but now that they have a definite spot and so far we are told that the location is really good as far as success rates, this has become an option. Reading through this thread, I am amazed at the similarities in symptoms, seizures etc.
Thanks for taking the time to read this! Happy holidays!
Laura
Re: Experience with Cortext Dysplasia/Cortical Dysplasia & Surge
Submitted by Raiann on Thu, 2006-09-07 - 18:21
Hello,
My son was dx at 9mos. with cortical dysplasia and (r) hemi - peresis. Then dx approx. 8 mos later with epilepsy (absence seizures). The dr's also said the dysplasia was on the frontal and parietal(?) lobes. Ryan is now 4 yrs old. we just saw his neuro and they now scheduled an mri and are looking at possible surgery. How is Jack doing? I can't give you any outcomes, but i do understand some of the emotions you may be going through. Some days i don't know if i can handle much more distressing news, which seems to come all at once. I really hope all works out for you and your son. Both of you will be in my prayers.
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Submitted by cheryl doran on Wed, 2006-11-15 - 09:54
Hi Shannon, I'm so happy to hear from you! I'm so glad that Jack is doing so well!!! I told Gabe right away and he was really happy too. He just said Jack is so lucky to have it done. I think the waiting is so hard. I will look into Dr. Frim- it's so great that he's given Jack such wonderful odds at sz. freedom. I would love to actually talk with you if possible. It would also be cool if Gabe and Jack could e-mail each other. Please e-mail me and we can talk more. I really want to talk to you more specifically about the hospital experience and Dr. Frim. Cheryl wegarden@comcast.net