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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
Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Experience with Cortext
Submitted by shannon1220 on Tue, 2006-10-10 - 22:02
Im so sorry to hear that about Gabe - Ive really had my hopes up that both of our boys would succeed with surgery. Jack goes in the 23rd for the incranial monitoring - then a few days later providing theyve captured enough seizure activity, they will operate. He will be in the hosp for at least 2 wks, then they sd about 4-6 wks recovery at home. We had our mtg with the surgeon last thurs & now im starting to get even more worried - its such an invasive surgery!Jack now knows hes having it done & he is not happy about it at all -the day after we saw the surgeon I asked him if he had any questions & he sd he does not want to talk about it - he did say he is nervous about being in the hosp for so long & about having stitches & 3 small brackets in his head. The other downer is he will miss Halloween, which is his absolute favorite time of year - I just havent had the heart to tell him this yet, & the other day while out he wanted a gorilla costume & I just bought it for him anyway out of guilt & sadness for him. I guess he can always wear it next yr & playing around the house in. How did Gabe take the news? I cant remember, are his seizures in his right or left side & is he right or left handed? Jacks is in his right frontal lobe & he is right handed, which the surgeon told us would be away from the motor strip but now I wonder. They also told us that it could come down to sticky situations like for example - they can stop the seizures but he will gain weakness in his arm or leg,etc...then we have to decide which is more important - i am hoping that we are not faced with this kind of thing. Pls continue to keep me posted, I will be out of touch starting the 23rd but I will update you as soon as we get home - it sounds like they may be going thru surgery around the same time - take care & you & gabe are also in our prayers, Shannon
Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: Experience with Cort
Submitted by cheryl doran on Thu, 2006-10-12 - 21:15
Hi Shannon,
Things around here have been kind of stressful because we've had to make some difficult decisions regarding Gabe. The last time we were in the hosp. I didn't feel like I got to ask all the right questions. Because I used to be a Peds I.C.U. nurse I feel so responsible to ask all the right questions and if something happens to Gabe it will be my fault. I did get a call on Monday stating that Gabe could possibly go in in Nov. or if that was too soon, possibly Feb. Well, Nov. did sound a little scary and Gabe was really hoping to play on this basketball team. We just decided on Feb.5th with a functional M.R.I. for language before then.
When I read the part about Jack mising Halloween and you buying him the gorilla suit anyway, I just started to cry becuase I can just imagine how hard that would have been. I woould have done the exact same thing. Did the drs. give you a % after surgery as far as a cure rate or % as far as better quality of life,i.e. decreased drugs or szs?
Gabe's lesion is on the R frontal lobe. Because it's so close to the motor strip, they will remove most of it and then do something called a multiple subpeal transection to the remaining lesion. They do this with anything thats too close to a critical area like language or motor function. Did they mention anything about a risk of behavioral or personality changes?
Both my husband and I have come to the decision if we do nothing Gabe's quality of life will never have a chance to improve, so if they give us a 50% at a better quality then we have to take it.
I hope you and your family are managing O.K. with this upcoming
surgery. You guys are in our prayers
Cheryl and Gabe
Re: Re: Re: Re: Re: Re: Re: Re: Re: Experience with Cortext Dysp
Submitted by cheryl doran on Sat, 2006-10-07 - 23:09
Hi Shannon, What did the Drs. say? Did they give you some idea of how successful it would be. Is the lesion next to the motor strip by chance? Do they think they ca successfully remove it all? There was a cancallation last week in Seattle and we took the opportunity to get things moving.They did another video E.E.G and a fmri. We didn't get as good as news as we hoped. The neurosurgeon said there was only a 25% chance Gabe could be sz. free without meds. and 50% chance that he would be sz.free with drugs. The success rate went down because the lesion is located too close to the motor strip and they probably wont be able to resect it all. We will know more early this coming week as far as needing any other tests or just go to the incranial monitoring then resection. Will Jack need intracranial monitoring or will they just do the mapping? I'm glad to hear Jack is doing better. It was quite stressful form awhile just because we really thought Gabe would have better odds. Are you scared? and what about Jack? You and Jack are in our prayers Cheryl