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Experience with Cortext Dysplasia/Cortical Dysplasia & Surgery?

Wed, 08/09/2006 - 23:52
Topic: 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

Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Experience with

Submitted by shannon1220 on Sat, 2006-11-11 - 23:31
Hi Cheryl! I am very happy to report that Jack had his brain mapping done on Oct23rd & his surgery on Nov.3rd. We got home on Nov.7th and so far everything is going very well! They found an area in his brain containing abnormal tissue & removed just about the whole area - it matched up with the pet scan indicating cortical dysplasia - wont know for sure til the tests on it come back. They are giving Jack a 60-80% chance for seizure-free. Prior to surgery they were certain they would irritate the sensory area - meaning Jack would have trouble speaking, numbness in left arm,hand & side - when he woke up NONE of that happened & the surgeon sd that in some rare cases areas of the brain that are being affected by seizures can actually relocate themselves in order to continue functioning! Isnt that amazing! I hope you dont mind but I did mention you & Gabe's situation to our surgeon, has Gabe had a pet scan? He highly recommended one & also did not favor the fmri, saying that it was not very accurate?? Anyway, I dont know your financial situation, but if there is any way possible, you may want to at least seek him out for a 2nd opinion - we found out while there that he is known world-wide & tlkd to 3 different families that were there just for him that were from TX, MX & UT! His name is Dr.David Frim at the University of Chicago. Maybe you could even just send him Gabe's records? They also have a very nice Ronald McDonald house to stay at on the hospital grounds if need be - I stayed in Jacks room & my ex-husband stayed there. Anyway I just know that he can help you & Gabe, when we first saw him he told us how complicated Jack's epilepsy was, which was what we had heard before at Mayo, Cleveland Clinic, Childrens-chicago & Rush-chicago - yet he made the whole procedures seem like they were a piece of cake for him! And what a miracle that Jack is doing so well & suffered no sensory loss! Please give him a try, email me if you need any addl info on him or phone number, address,etc. You can see him online too at the univ of chicago website for more info. Im keeping you & Gabe in my thoughts, please let me know how things continue to go for you. Shannon

Re: Experience with

Submitted by wendym06 on Wed, 2010-12-08 - 15:00

Hi!  I know that your son had surgery a few years ago, I was wondering if you might be able to provide an update of how he is doing today?

My 3 year old daughter is could very realistically looking at the intracranial monitoring/strips, possibly followed by surgery in January for a right frontal and temperal lobe resection for cortical dysplasia.  Would appreciate any information that you could provide.

 

Thank you

Hi!  I know that your son had surgery a few years ago, I was wondering if you might be able to provide an update of how he is doing today?

My 3 year old daughter is could very realistically looking at the intracranial monitoring/strips, possibly followed by surgery in January for a right frontal and temperal lobe resection for cortical dysplasia.  Would appreciate any information that you could provide.

 

Thank you

Dr Frim

Submitted by shasta on Wed, 2007-11-21 - 07:57
Hi Shannon...I'm new to the whole world of Epilepsy. To make a long story somewhat short. My 10 month old daughter started having seizures at 4 1/4 months old. We have done an MRI..(which was normal) and EEG (twice) and a 24 hour video EEG..(which came back showing seizure activity) Which her Neuro has decided she has Frontal Lobe Epilepsy. After failing 3 meds....Keppra, Phenobarb, and Trileptal. (which has all work a little) She is still having 10 or so seizures (mild) only during sleep. We have decided to try one more med (which we are doing right now). Felbatol. Not having much luck. I noticed you saw Dr Frim at the Univ. of Chicago. We are living in Indianapolis...but we're from Illinois. I was just wondering how your experience was with him and his team?? We are getting the ball rolling to get a surgical evalution for her. I'm scared to death...but she needs something done...she's about 5 months behind in her gross motor skills...her PT says she has the drive and will...but we need to stop these seizures and maybe come off some Meds...(total of 3 at a time) I hope your son Jack is doing GREAT.... Thanks for your time. Shasta shastajones1818@yahoo.com

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