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

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Anyone Ever Have Epilepsy Brain Surgery? Can You Share Your Experience?
A MyEpilepsyTeam Member asked a question 💭

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.

posted 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

posted July 5
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.

posted September 6
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!

posted September 5
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!

posted October 24, 2022
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
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.

posted July 4, 2022 (edited)
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