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Epilepsy Surgery

A MyEpilepsyTeam Member asked a question πŸ’­
Albany, LA

Hi everyone. I am Robbie, going to be 57 on August 1 and have had seizures since 11 years old. I take Carbatrol, Keppra and Lamictal for my seizures and also have had VNS since the early 90's. I have never been able to get my seizures fully controlled. The last couple of years they are getting steadily worse...have tried 3 new meds over the course of last year..had reactions to all if them and couldn't take. I'm thinking seriously about having the surgery done to remove scar from my brain they… read more

July 29, 2022 (edited)
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A MyEpilepsyTeam Member

I had temporal lobe lobotomy done back in 2012. It helped for about for about 6 years. I even got off my medicine. Then had a seizure at home and now back on the meds. Although my auras have gone away since then. I had one about two weeks ago but didn't have one since the surgery in 2012 so that's like a decade. It's different for all of us. I heard of people that it helped get their seizures under control. Another thing for you marijuana can help with your seizures. Don't know about your state and being legal but just letting you know. There's CBD oil too you can put under your tongue.

July 30, 2022
A MyEpilepsyTeam Member

I had brain surgery in 1990. I was talking with my surgeon while he was operating on me. I'm very glad that I had the surgery. Before the surgery I was having seizures every day, as soon as I stood up from my bed my hands started shaking and then my legs were shaking. After the operation I was up walking the next day. The doctor had me out of the hospital in 1 week.

March 17, 2024
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member then you tryed every alternative route there is. the only option is the surgery. my surgery is the worst of the worst... i had 1 side of the brain disconnected and removed. i think drs called it a hemisphereexamy. and that surgery was before the advancements of the laser surgery and better equipment.
just ask a boatload of questions about this surgery... is this dr a do this kinda surgerys and for how long... what kind is it... what is the best of the best and worst of the worst... any and all side effects... tharapy after surgery... and any other qusetions i missed.

July 31, 2022
A MyEpilepsyTeam Member

Sorry you got Lupus. I been on phenobarbital cents I was 6 months old I'll be 58 next year. I stay with the old meds because the side effects are not as bad as with the new stuff.

July 30, 2022
A MyEpilepsyTeam Member

hay @A MyEpilepsyTeam Member i kindda have the same thing you do and had surgery. had seizures from the kindergarden boosters vax (1990-91). had a lotta seizures a day. tried ever med and failed. tryed strict keto with huge sucess for 10+ years but got almost a week cold/flu that started the seizures agian. tryed alternative (hippy/voodoo) meds. tryed surgery (2001) and it kinda helped (was 4 types of seizures without surgrery and after surgery only auras and sometimes simple partials) but i had seizures daily. tryed cbd and the seizures are gone (if i take a certian amount a day). note surgery in 2001 was when the marijuana (both cbd and thc) was illegal.
my advice is...
if you have a easy fix, go with the surgery... but the side effects are mini to max (depending on what type of surgery and what effect the brain drs cut off are and motor skills). i cant use my right arm, i need a foot brace and a arm splint (at night), and i slower speech and misspelled words.
if you wanna get a little bit harder, tryed alternative meds (vitamins, different kinds of keto/atkins/low fat... high carbs diets, exersising and meditation (yoga and deep breathing)/weed... cbd... cbd with a little thc). no side effects (that i can know of) but you need to do your research. there is knockoff items.

July 30, 2022

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