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.
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
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.
Mine originates in my hippocampus though so my memory has become a little bad depending, its been improving recently, ive had this since i was 8 though and we recently found out that my language is dominate entirely in my right side. They said it likely moved itself and adjusted slowly because of the trauma, i got epilepsy randomly, no injury. But dont mess with your brain too much, im trying to get an rns since the vns isnt working, but no more removals. Dont mess with it too much because you cant take it back after.this is from february 21st 2016, i was 15. It didnt stop them, it does for some people but its doubtful trying twice like this will help. Its a good thing i only have auras.
I have always gone back and forth on brain surgery. After an MRI and CT scans, I was told that it wouldn't help me because they can't see any damage. My seizures show up on EEGs, but I've only had petit mal seizures while hooked up. The grand mal seizures are the ones that I can't handle.
heres a video of my surgery thing (down below). idk if i covered all of my surgery video so i will answer your questions. pre surgery, i had a 1-4 types of seizure (aura, simple and complex partials, grand mal) every 1-3 hours at a time (even more if i am really sick).
had a left hemispherectomy (1 side is disconnected and part of the brain is removed) at the cleveland clinic in 2001 (when i was 15). note this was before the vns/rns and the laser surgery thing. i didnt feel a thing. the 1st minute i was preping in the hospital bed thing and the next minute i was bandaged up and already had the surgery. funny side note... i didnt know i had the surgery and dad turned it from a cartoon to a game, i said 'i was watching that' and dad started and said 'someone is awake'.
post surgery, i still have seizures but it is 1-2 seizures (aura and simple partials), every 1-3 every day... if i am on my keto diet and cbd... 1 kinda seizure every couple of months to less than a year. it is a major inprovement. as for the side effects.... my right body is less than the left. my right arm moves... but it is limited... and my right hand dose not work. my right leg works but it is limited... and i have to get a foot brace. and that is every 2-3 years. my speach is slow and sometimes i can not think of a certen words. i have a hard time typeing. not because i can type, but because my handwrighting is that of a kindergargener/1st grader (miss spelled words) from time to time (some sites have auto correct... this site or my computer didnt). lastly my mind is (excuse my french) 'full of shit'. i cant process more than 2-4 memory thing at a given moment. i have to go to tharapy every couple of years for a 'tune up'.
in conclusion, no it didn't cure me but it did get rid of most of my seizures and time between set seizures. i have the side effect of the surgery but if i didnt undergo the surgery, i would not be alive today or just a husk of me. and it was painless. but the tharapy suck sometimes.
note i tryed everything (at that time) with no sucess. i was out of options. but i was a rare case and my surgery also was a rare case. my situation is the worst of the worst cases.
Yes mines been going on now 3 years. I was having them 3 too 4 times a week. I finally made my mind up and got in that stretcher... Other than your head being swollen for a few days having that spot were they shave the hair off your head grow on back my 3 to 4 times seizing a week dropped I didn't stop seizing but the surgery definitely helped. Im not taking near as many pills either as I were.
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