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Old 07-31-2010, 06:29 PM
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Hi


Hi I am a mother to a 17 who has epilepsy. He has dealt with it since he was 15 months old. Just went to the EMu in Memphis and they are now working on surgury to remove part of his Temporal lobe I am very nerveous wondering if anyone has been through this and can give me some advice on it
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Old 07-31-2010, 07:54 PM
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Hi


Have you checked into the Responsive Neurostimulator Device (RNS). The company Neuropace just submitted their papers to the FDA for approval. If the FDA approves it it will be available to anyone in July 2011. I know that that's a long time from now but if your son hasn't had surgery by then then maybe that's something to look into. I believe this surgery is less invasive than the Temporal Lobectomy surgery. I hope the best for you.
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Old 07-31-2010, 10:08 PM
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Hi Martin,

I used to live in Memphis and had a Left Temporal Lobectomy back in 1990, so that was a long time ago. It was performed at what used to be the EpiCare Center at UT Memphis, part of Semmes-Murphy Clinic. Is your son @ LeBonheur Children's Hospital? For more info, here is a good website:

http://www.epilepsy.com/EPILEPSY/types_surgery

I had to have the WADA testing before the actual Lobectomy. I was in the hospital for 7 days and immediatelyafter surgery couldn't remember my family, but did the following day. My memory is worse now, I suffer from aphasia and I was only seizure-free for 14 months. We tried numerous medications and 8 years after the Lobectomy, I had the Vagus Nerve Stimulator installed. I'm still not seizure-free, but
don't have as many and they aren't as severe as they once were.

I hope your son has a good outcome with the surgery!
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Old 08-01-2010, 07:24 PM
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Yes he was at Lebonher but ne is home for now they change his meds from trilepital and lamitical to kappra and lamitical. I haven't seen any changes except he had 2 episodes in the first week.
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