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Has Anyone Had Brain Surgery To Correct Their Seizures? Im Scared And Would Love To Hear Your Stories And Get Any Advice I Can

A MyEpilepsyTeam Member asked a question 💭
Sydney, AU

I've got complex partial seizures with identified abnormality in my temporal lobe. Seizures are focal so my neurologist said surgery is an option I should consider, but I'm pretty scared and not sure it is worth it. My seizures aren't very bad and I could still lead a mostly-normal life but I plan to become a doctor and with sleep deprivation being a major trigger for me it may prevent me from pursuing my desire to work in a hospital (which means long hours). Im not sure about the process of… read more

January 19, 2017
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A MyEpilepsyTeam Member

I had surgery in July of 2004, a left frontol lobectomy. I guess my only side effect was that my IQ increased to an above average level, it's working well, my last seizure was in 2011 and I still take medication, Vimpat, 150 mg twice a day. I was put in the hospital in April of 2004 for testing to find the problem area of the brain, University of Cincinnati was doing IQ testing for before and after surgery and I was considered average. A few months after surgery I did the test again, about a week later the phone rings, it was from someone in charge and that person told me that my IQ had gone up by twenty points. That doesn’t happen when you lose part of your brain. Surgery can be good for you.

March 12, 2023
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A MyEpilepsyTeam Member

Today marks the 1 year anniversary of my last surgery and today is also a 1 year milestone of being seizure free. Read back over my profile I have written a lot about it.
It is the scariest thing I have ever signed up for 3 times. But It was worth it.

April 14, 2023
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A MyEpilepsyTeam Member

I had been having seizures every so often for 40 years - far enough apart that I could drive, not drive, drive, you know what I mean. Then I had an almost fatal accident and felt it was gonna be a long time before I drive again.
Then I get a call from my mother-in-law who told me to watch this show on TV. I watched a woman complain about her seizures and talk about surgery. I watched the tests they did then the surgery and I was taking mental notes.
I wasn't gonna wait for the suggestion. I called my epileptologist and told him I wanted surgery. He said he thought I didn't need it so I called to report every little feeling until he said we'll start the VEEG. I had only one seizure until the last 12 hours and then I had two of the worst seizures I ever had. Before I left the hospital, he told me I was a candidate for a left temporal lobectomy.
The day of the surgery I was happy and excited. I was cracking jokes about it to the point where nurses were asking, "Do you know what you're here for?". I had just one short, nervous point and that's when I heard, "OK, we're putting you under.". It was a 5 1/2-hour surgery.
I spent just 12 hours in ICU and they were ready to send me home on the third day. I have a thing with numbers so the first question I was asked after coming out of ICU was, "What's the square root of 7450?". When I said it was approximately 86.3, I got an OK sign but that just meant they left the part in there that they wanted to leave.
Six months later I learned they took out the part I wanted out because there were no signs of seizures. I went off two of my meds in the next six months but stayed on the last one 5 1/2 years because I wasn't brave enough to risk it. I finally did and I'm glad I did.
It's been 16 1/2 years since the last pill and 22 years since the last seizure.

February 20, 2023
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A MyEpilepsyTeam Member

Did you ever have the surgery? I had surgery. I had part of the left temporal lobe removed, and I am now ten years seizure-free. I was not on here when you asked that question. I just saw your question today. I am going on for my Masters in counseling. I got my bachelor's, post-surgery! I am doing things that doctors never dreamed would be possible.

August 1
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A MyEpilepsyTeam Member

Hello Jessicakate, I know how You feel right now. I had the depth electrodes test a number of years ago and was scared something would go wrong during or after the surgery was over when I was just at home. That was a difficult choice to make, but I also remembered this test would also bring some answers. So I had that test and found out seizures are coming from both sides of my brain so no other kind of surgery could be done. So right after that I had the vagus nerve stimulator implanted. So now weigh the scales can You keep/do want to keep having seizures even if they are small ones, continue taking medication, blood tests etc. or not have to do any of that again if this surgery is successful? One way I find to do something is without thinking-1st get two pieces of paper write down on one in the middle of one piece of paper -“have surgery” then on the second piece of paper write down “don’t have surgery, then it circle both of them don’t waste any time on at a time between those things You circled. What circle is larger? The larger one circle may be Your subconscious mind giving You the answer. That is a trick that I have learned to use when I was in college.
Good Luck 🥜. Peanuts

April 15, 2023 (edited)
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