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Anyone Ever Have Epilepsy Brain Surgery? Can You Share Your Experience?

A MyEpilepsyTeam Member asked a question 💭
Pittsburgh, PA

Theyve been trying to get me to get epilepsy brain surgery for years the older I get the more I'm considering it as I'm seeing how it's affecting my life as an adult. I just want to hear other people who have already done it experiences so I know what I'm getting into. Did it completely cure you? Did your seizures get worse? Any mental changes in personality or mood? How painful was it? Etc.

July 4, 2022
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A MyEpilepsyTeam Member

I had surgery in fall of 2004 & it was very easy with no seizures for 5 years to the day. Hope this helps

July 5, 2023
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A MyEpilepsyTeam Member

Yes!! 1995 at the time very successful. Scar tissue removed from right temporlobe. Afterwards off all meds. For 10 years. 1 episode caused to be on 1 med since. Probably forever.

September 6, 2023
A MyEpilepsyTeam Member

I have had 3 brain surgeries. After my last surgery, I haven't had a seizure since. Mine was due to a rare HH tumor. Since the tumor couldn't be cut out, the laser surgeries killed what was causing my seizures in the tumor. Since the tumor is still there, I will have some of the same problems I have before my surgeries. It was painless and safe. I was released from the hospital at noon the next day! My memory is better than it's ever been in my life and I have more patience than I have ever had as well!

September 5, 2023
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A MyEpilepsyTeam Member

I had 3 brain surgeries. My first was "Radiation" or GAMMAKNIFE. It helped for some time. Then I had 2 Laser Surgeries. One June 15, 2017 and the other June 15, 2018. I was the first to get the surgery at the University of Michigan in 2017. I had to get a hole drilled in my head and a laser shot at my tumor for 6 hours. Both times I left at noon the next day and got the stitches out 2 days later. I have been seizure free since my last surgery in 2018 and I have had my Driver's License over 2 years now!

October 24, 2022
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A MyEpilepsyTeam Member

I had my brain surgery in September, of 1998. Before the surgery my Epileptologist had me do different types of tests .
The Different Tests I Did Were …………..
NeuroPsych Test / IQ test
MRI
WADA test
Inpatient EEG and Brain Mapping ( GRID TEST )

After all the tests and if you’re a Candidate, the next step is the surgery.

With me the Impatient EEG / Gridd test and brain surgery we’re done all at once. Before this day I I prepackaged a activity bag ( duffel bag or traveling bag ) , with a deck of playing cards , reading / puzzle books, laptop or IPad , cell phone and ect. I even brung a bag of snacks and non alcoholic drinks ( pop, juice, tea, water and ect ). I was also told that they would shave my hair on the portion of my head, that the surgery will done. So I decided to shave my whole head and let my hair grow back evenly.

During the EEG and Grid electrodes test, the staff started reducing my medication dosage a little everyday. They wanted to make sure I seizured a big seizure. The seizure waves would show on the EEG monitor and the GRID mapped exactly where my seizures were located for the surgery .

Before the day of my surgery, a specialist came to my room , with a device with number grids on it. He connected the grid electrodes to the device. When he would touch a certain grid number, he would ask me to say the ABC’s , 123’s , Twinkle Little Star and other elementary learnings. If I struggled with easy leanings or forgot , then he hit part of my brain, where the Grid Electrodes were.

They did my surgery and I was put in ICU for a couple of days ( really don’t know how long I was in ICU ) then I was brought back to the Seizures unit. Stayed for 4 or 5 more days,before being released.

July 4, 2022 (edited)
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