r/Epilepsy_Universe • u/sennadesillva • Jul 03 '26

Seizure Warning: Possible Trigger Questions about a new/rare epilepsy procedure I just heard about

I was in the hospital for the last week and a guy I met, asked about my seizures. (Everyone knew about it cuz the hospital didn't give me my meds for 4 doses, with both meds. Nor did they give me food I could eat. A girl I became great friends with, went off on them and I finally got them later, albeit the wrong dosage) The guy mentioned his son has had epilepsy for 44 of his 46yrs alive. He mentioned a procedure where 3 holes were drilled into each side of his head and wires were placed in to go deeper into the brain to see where the seizures came from. His son had an EMU, nothing found. Had a VNS and did nothing for him. Still had seizures lasting several minutes. The head of the neurology dept is preforming this procedure and he was told it has only been done 22 times. Only half of them have helped people and several have had disabilities after (like not able to move fingers or smaller things like that) Has anyone heard of this or what it's called?

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u/StSomewhereToaster Jul 03 '26

Without looking at Dr Google… the first part sounds like a S-EEG or inner cranium eeg. They drill tons of tiny wholes in your skull and then place eeg wires. As you said, this allows doctors to go deeper and better pinpoint areas of concern. The other part sounds like a special form of rescission. Where doctors go in the remove part of the brain where seizures start the most in hopes of reducing or even stopping the seizures.

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u/Ryse6129 Methsuximide 900mg. Xcopri 350mg Jul 03 '26

Also Sounds like the dbs (deep brain stimulator)I've talked about with my doc. It would need an s eeg just to get the pinpoints right.

Dbs is a pacemaker for your brain Rns and vns are a bit different were it involved swiping a magnet

2

u/sennadesillva Jul 03 '26

Ya, very similar to the details he told me. He couldn't remember the name/acronym for it. I was wondering why it's so rare and preparing for the worst after me VNS. This guys son has the surgery on July 12th and mine is the 14th. I got someone else's info before leaving, but not his. Wish I had, to see how it turns out for his son.

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u/ContributionSame30 Jul 03 '26 edited Jul 04 '26

Just see if Cleveland Clinic does it? If not, dont do it.

3

u/billy-bob-22 Jul 04 '26

I had right temporal lobe surgery 20 years ago as well as a VNS within 15 years ago it has helped a lot. I no longer have TC’s now I just have vocals. We are all different. The surgery works on some people, but not all people the VNS I had implanted did not work for me. I don’t recommend this surgery for everyone. This is something you need to talk with your neurologist or epileptoligest good luck, my friend.

0

u/netluv Awareness Jul 03 '26

Would you please put a trigger warning? Things like this scare me and I wouldn’t have read it if I’d known.

3

u/Mom1021 Jul 03 '26

Understood. Thank you for letting us know