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Experience with Cortext Dysplasia/Cortical Dysplasia & Surgery?

Wed, 08/09/2006 - 23:52
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

My daughter had surgery a

Submitted by Cindy gonzales on Thu, 2018-03-01 - 09:08
My daughter had surgery a little over a year ago she has had about 6 seizures some due to healing but she was averaging 1 to 2 a week before surgery isn't 100 percent at least not for her because of her actual placement in the brain they had to leave about 10 percent otherwise they could have messed up her vision and memory skills now though she isn't afraid of kids seeing her have a seizure or urinating in public due to one it has given her a life again and a future everytime your child has a seizure there is brain damage and the possibility of them not coming out of it she is still on meds and may have to be the rest of her life some people are lucky and can eventually get rid of meds completely this is also something that will shorten your childs life span tremendously i didn't want the surgery it was the hardest decision I have ever made in my life but she was 11 almost 12 and she wanted it and ultimately it is her choice all she wants was to be normal she is a straight a student and highly intelligent she wants to help people like herself someday and she wants to be a neurologist this isn't for everyone it depends on your child placement like i said part of hers was inoperable you need to talk with her doctor and be fully explained exactly her situation in most cases if one med doesn't work then eventually none will because they all work generally the same for nerve receptors i will pray for you cause that really is all you can do but for my daughter it was the best choice we had and has given us our lives back before i would lose job after job because of her situation and she was missing so much school now she can spend the night with her friends and be a kid also i don't know where you live but uk hospital in kentucky has great doctors who are doing the newest techniques and because they are a teaching and research hospital they are doing things that aren't being done anywhere else in the country they have an epilatoligist that worked directly with the man who invented the sensors that can be placed instead of surgery and they have a doctor that is second in the country for depth electrodes to pinpoint exactly what area is causing issues this is a procedure never used for seizure patients before it was only used for parkinsons so don't be discouraged i heard so many horror storys before and heartbreaking things about people who had very bad things happen during surgery but what they did 10 years ago isn't what they are doing now just make sure you what they explain to you makes sense other doctors didn't agree with my daughters doctor but i felt what he was saying made sense and he was right and after surgery all the other doctors agreed he was right but it was a leap of faith that we had to take and i would take it again

Re: Experience with Cortical Dysplasia & Surgery?

Submitted by Neurosearch-Ventura on Tue, 2011-02-15 - 16:42
Wow, so apparently I'm late on the scene. I'm almost 21 years old. I didn't start having "grand mal" or tonic clonic type seizures until I was 16. I've had absence seizures and the other "smaller" types of seizures since I was 8-10. I've had multiple EEG's, MRI's, CAT scans, and spinal taps. I went into status two years ago for about a week. I've been misdiagnosed and rediagnosed. Finally I had a really amazing doctor tell me that I had cortical dysplasia in my frontal lobe right above my corpus collosum. We're scheduling both an intracranial EEG and the surgery for this coming summer. I'll be happy to finally be a normal adult, since seizures basically stole my teenage-hood. I've never driven or had a real job, and I need to pass college to stay on my mom's insurance. Good luck to all you mom's and dad's out there. When I was in status for a week, my mom stayed with me 24/7. Get ready for the long haul.

Hi everybody! Im new here and

Submitted by Minichinimini on Sun, 2019-01-27 - 23:26
Hi everybody! Im new here and i read about a lot of kids with cortical dysplasia. I’ve been diagnosed when i was 25. I’ve never had a seizure before until one day i had at least 3/4. Now im having 2 or 3 every week. Has anyone else been diagnosed at a late age?  Thank you for tell us your experiences! 

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