Experience with Cortext Dysplasia/Cortical Dysplasia & Surgery?

Re: Experience with Cortext Dysplasia/Cortical Dysplasia & Surge

Submitted by jackrichardkelly on Thu, 2010-09-09 - 23:30

Cortical displasia is new to us as is Frontal Lobe Epilespy. We have done 5 minute MRI, Contrast MRI, 72 hour video EEG, another EEG, Neuro  psycho metric testing. We are at the hopeless point and I refuse to go there. I will go anywhere and do anything for my son. I am hearing that surgery is not an option due to our displasia spot. I have to believe that there is a surgeon out there somewhere that can do this. I am believing that God is big and he can REKNIT my sons brain too. I will take a miracle or medical miracle. MaryAnn

Re: Experience with Cortext Dysplasia/Cortical Dysplasia & Surge

Submitted by RyanL on Wed, 2008-03-05 - 10:02

Dear Gabe's mom, my name is Nicole and I'm the mother of 3 boys.  My older son has had a seizure condition for the past 10 + years.  Has had several MRI's that have all come back normal till a few months ago.  That's when we found out that he had Cortical Dysplasia that was causing him to have seizures.  Ryan who is going to be 15 in a few months has qualified for surgery, but we are very hesitant to proceed at this time.  Our new situation however is with our second son, Alex (10) who was also diagnosed with CD a few days ago.  We are very shocked with this diagnosis since Alex has never exibited any seizure like behavior....and then a read your note and had to get in touch with you.   Your note from 1 1/2 yrs ago describing Gabe "having a melt down" closely resembles our Alex.  He has "strange" behaviour at times and has concerns behond his control.  I have never thought about checking him for Tourettes (I'm not too sure I even know what that is) but would like to know if you had Gabe evaluated by a specific kind of neurologist that I too should have.  Alex will at times blur out information completely unrelated to the subject on hand.  Did Gabes ever do this, if so was he aware of doing so?   I tell you we just can't believe we have two children with the same condition.....and now we need to check the baby who probably also has conrtical dysplasia.  Please let me know all you can, Alex has been scheduled for an eeg, but I know that's not going to be any good if he doesn't have a seizure during the reading.

Thanks for any help you're able to give me.  Nicole (Ryan, Alex and Connor's mom) 

Re: Re: Experience with Cortext Dysplasia/Cortical Dysplasia & S

Submitted by shannon1220 on Tue, 2006-08-15 - 07:41

Thank you for the reply, my son has had 2 MRIs, the last 1 was 2 yrs ago & both were normal. They have scheduled him to have the intracranial monitoring (brain mapping) on oct 16th. They will go straight in for surgery after 3 days of monitoring, if all the seizures still stem from his r frontal lobe. The cortical dsyplasia appeared thru a pet scan! His seizures vary alot - usually every spring he has a meltdown with them. Have you told your son about the potential surgery yet? Ive been waiting to tell mine until it gets closer, theyve also told us to shave his hair down prior since they will shave a large area of it anyway & it looks better...this will not go over well with him! It would be nice if our sons could have each other to talk to about it when its time, do you think your son would be interested? How does he do in school? Mine did so well up until last yr (4th gr) when the bottom dropped out & he stopped progressing - its like he had a stroke or something & has forgotten how to access a lot of the info he has already learned, esp.math! What are your sons seizures like & his behavior too? Heres what we have gone thru off & on - pls let me know if any of it matches what your son has gone thru - rapid eye blinking, mouth opening, seeing people/shadows, staring spells, & right now a lot of "tourette-like" symptoms like saying bad words & inappropriate things, obsessions with "what if i jumped out my bedroom window", "what if a scorpion stung me",etc. Lots of bizarre behavior, but then somedays acts completely "normal". Tourettes was ruled out over 3 yrs ago, & his dr now did say this is all happening due to where the seizures are located,etc. Please stay in touch & thank you again for your reply, Jacks mom