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Possible surgery undecided

Hello everyone. I have been dealing with this condition for seventeen years now. I have tried several AEDs and have also had a VNS operation. Now, I am discussing the possibility of a right temporal lobectomy with my doctor. However, I wonder if my situation would be unrelated to my seizures and more related to the meds I take. I have had less than ten seizures in the past year, however, the side effeccts that I deal with from the meds are frustrating. Many of you can probably relate to sleepiness, tremor, balance issues...I feel that surgery would be my last chance to become siezure free. I still wake up in the morning wondering if I will have one. Surgery could potenially stop this feeling of helplessness. But is this surgery fear and med- related? Do I have surgery to avoid only these things, or to become seizure free for good? Can someone give me some insight? Thank you!

Comments

Re: Possible surgery undecided

Hi
I am 41 male and I am going through a similar thing---should I get the surgery, or can I tweek the meds just a bit. Whenever I have a grand mak, the dilantin is low, so my body is not absorbing it, or maybe when I exercise, it metabolizes it faster. But when I take more, I get trembly, irritable, etc. So I am thinking seriously of left temporal lobectomy. I worry and feel guilty that, "Well mayby I have tried medicines enough" when I've been trying them for 30 years. I have had countless hospital visits, but then I'll go years without a grand mal. Its just nice to talk to some one in a similar place.

Re: Re: Possible surgery undecided

Hi,
I'm new here. Love your username. It gave me a good laugh! I guess a lot of us on the site are 'floppy",eh?
Take care,
Anne.

Re: Possible surgery undecided

Hi
I am 41 male and I am going through a similar thing---should I get the surgery, or can I tweek the meds just a bit. Whenever I have a grand mak, the dilantin is low, so my body is not absorbing it, or maybe when I exercise, it metabolizes it faster. But when I take more, I get trembly, irritable, etc. So I am thinking seriously of left temporal lobectomy. I worry and feel guilty that, "Well mayby I have tried medicines enough" when I've been trying them for 30 years. I have had countless hospital visits, but then I'll go years without a grand mal. Its just nice to talk to some one in a similar place.

Re: Re: Possible surgery undecided

Hello.

I understand....I've taken maybe ten drugs, and it all seems so confusing. I suppose you can feel like you're walking a tightrope sometimes. Wow. I took dilantin in the very beginning, and it only worked for awhile. My seizures are mostly complex partial, but just frustrating enough to interfere with life. I'm sure you can see this too.

I was born too long ago to

I was born too long ago to have the option of surgery after having epilepsy for just 17 years.

I spent decades of my life going from one specialist to another until I found an epileptologist that got me controlled almost immediately.
Ten years later I lost that control and began testing re: possible surgery.

I believe I was I was lucky to even have the option of possible surgery and it was definitely worth taking that chance but I remained prepared that it might not work as I didn't want to get depressed if it failed.
(The success rate for a temporal lobectomy is approx 70%)

My surgery was 19 months ago and since that time I've had no seizures & the after-surgery VEEG I had was completely normal. As of last June I've been off all AEDs for the first time since I went on them.... more than two score ago.

If you are also lucky enough to also have that 'chance' I'd recommend you take it.

Best wishes to you.
~sol

Re: I was born too long ago to

I just turned 40 and started receiving disability, so it's on my mind.

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