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Epileptic Surgery???
A MyEpilepsyTeam Member asked a question 💭

My son is in the process of being tested for temporal lobe epileptic surgery. The neurologist told us it will stop the seizures. Has anyone in the group experienced this or have any positive feedback?

posted May 12, 2022
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A MyEpilepsyTeam Member

I had surgery done on my Left Temporal Lobe. Just want to alert you a little Tidbit. There isn’t any guarantee, that your son will be seizure free. There is a possibility of seizure reduction or being seizure free.

For me I have 25-30 seizures a month ( or once a day ) . Before my surgery I had the same amount of seizures. The upside to my surgery was, that I no longer have sever seizures, like the Gand Mal ( Tonic Clonic ) seizures. I today have mild - moderate seizures and they last 25 - 60 seconds. It was worth it for me.

My MAIN POINT, is don’t put your hopes up too high. Yes, you can hope and pray for it to turn out the way the Dr. said . Just don’t raise your hopes , so high, that you become depressed from the results, you were hoping for.

There are a lot of people on here who have had better results than me.

posted May 12, 2022
A MyEpilepsyTeam Member

Before i had my surgery, i was averaging 4 to maybe 5 seizures a month. After the surgery i am down to 1 every 4+ months and still taking medication which i don't mind. But everyone is different. What may have worked great for someone else, it may be slightly different for another person. By all means if you feel that the surgery will reduce the seizures then go for it. But make sure you research the surgery your son is going to have. Lookup the surgery from various sites and on YouTube and find out all of what is involved. YouTube has simulation videos and interviews from surgeons and patients. Then ask 9999 questions until you feel absolutely comfortable about what is going to take place. When i was going to have my surgery i asked my neurologist questions and she told me to ask the person who is performing the surgery. Then I viewed the simulation on YouTube. It may not be as accurate as your son's surgery, but it will give you an idea of what is going to take place. Lastly, how does your son feel about it? He has to feel comfortable with it also. As Mantle pointed out, I have to say I support it.

posted May 12, 2022
A MyEpilepsyTeam Member

Adding to what they said, if I was contemplating surgery, I would try to research if there is maybe certain surgeons that have higher success rates than others. If I’m going to trust someone to operate on my brain or other major body parts, I’m going to try to find the best Dr for the job within my means.

posted May 12, 2022
A MyEpilepsyTeam Member

All I can say is it was one of my options 20+ years ago. I wanted it. I found I was a candidate. It worked. My last seizure was in November of 2000. My last pill was taken July 15, 2006.

Drawbacks? They all seemed temporary like memory loss. I forgot how to do a job I just learned before surgery, but the memory eventually got better.

I have to say I support it. I don't know if you can get this kind of information from your neurologist but mine let me know I had a 95% chance of better seizure control, 85% chance of total control but still on meds or a 70% chance of total control and going off meds. I was just lucky enough to be part of the 70%.

posted May 12, 2022
A MyEpilepsyTeam Member

I had laser ablation in 2020 , the first 8 months i was seizure free, then i started to slowly get seizures again. Now i get them sometimes, mainly around my period. Or missed meds. I used to take morning and night meds, but after surgery i immediately stopped morning meds. I went from having maybe 10-20 seizures a day to maybe 10 seizures a month now. So a huge improvment for me, but wasent 100% success which of course was not guarenteed to me before surgery.

posted May 13, 2022
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