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Information regarding Surgery

Hi, I am 25 years old, I have partial complex seizures, and I was reason diagnose with Mesial Temporal Lobe Epilepsy. I have been taken medicine since I was about 13 years old. I have been on a least 4 different medicines and the medicines are not working for me. I was referred to a to specialist at Washington University in Saint Louis, and I under took some testing. I had to take a pet scan, MRI, and was put on EEG monitoring so they could find where my seizures was coming from. Every thing match to left temporal lobe and all the test match the same spot in which the seizures were coming from. The doctors think I an excellent candidate for surgery with a 60-80 percent chance of not having seizures. I am now at the stage of making a serious decision on what choice I should make regarding my seizures. I could have left temporal lobe surgery, try to find another medicine (which have a ten percent chance of controlling or preventing less seizures), or they could insert some thing like a pace maker kind of thing in my chest to send electros to the brain (which have a ten percent chance of controlling or preventing less seizures), or have a strict diet to follow to prevent or control the seizures.

Comments

Re: Information regarding Surgery

Hi John,
I know how it is to be in your boat. I was in a position very similar a couple of months ago. Have you seen a neurosurgeon?? The pace maker (VNS) is something that I had done and I am a lot better because of it. I was also on a lot of medications that were not effective and have since been taken off all the meds that I was on and been put on just one. Judging from your description, I would suspect that you have focal epilepsy and the best med to take for those that I've learned was Tegretol. Have you taken that?? It might be a combination of things....right now, I have VNS and am taking depakote for my seizures. If mine was indeed focal, I would highly consider the surgery. I hope this helps. I'm sure you'll make the right choice. Keep me posted.

Hi Jon, IMO you are lucky;

Hi Jon,

IMO you are lucky; as ,when I was your age, surgery wasn't as common. But, over the past 10 to 12 years it has become routine and there is far less risk. I had simple and complex partial seizures.

My surgery was early last January.
Since that time, to my knowledge I have had no seizures.
I've also had a normal EEG (vs 'abnormal', before surgery)
As my days all seem longer, I now believe I was having far more seizures than I was even aware of.
I'd recommend surgery.
But, kev is right..you will make the right choice for 'you'.

wish you the best,
~sol

PS..

Hi kev,

Tegretol may work for some but it definitely does not work for all. It's in the group of 'older' seizure medicines, so there are longterm side effects also. Having been on Tegretol for decades, I now have osteoporosis, and it's most likely the Tegretol that gave me tinnitus also. One of the main reasons I wanted surgery is so I can get off a drug that is having an effect contrary to the osteoporosis medicine I'm taking.

Re: Information regarding Surgery

hey john, i too have complex partial seizures, the big ones r controlled, but after i workout or exercize i have smaller ones just randomly. i recently stayed at the national institute of health in MD. i was admitted because they wanted to do all the tests at once and some of them weren't very pleasant. i had an mri, an eeg, 2 different types of pet scans, an HD mri or something, and the worste was the VEEG while watching the giants vs eagles game where i had a seizure during the 4th quarter and missed the giants comeback. after all of that, which lasted about 10 days, they found that my seizures were coming from the upper right side of my brain. i too am a canidate for surgery, they said there is a 60% chance of never having seizures again. its weird because i had 4 different doctors when i was there and 2 of them were trying to push the surgery, but the other 2 said it wasn't worth the trauma and to just stay on my meds. i have a choice though, its 60% chance and i, like u, have to make a tough decision. i just got a new job and am going back to school in january, i know it takes forever to recover from and u have short term memory loss for awhile after it among other side effects. if i ge tit, i basically put my life at a standstill and it could all be for nothing. i mean at least you have a 60-80% chance, i only have a 60% chance and i have no idea what to do. on one hand you got a 60% chance of never having seizures again, and on the other you have a possible waste of my life where i have to stop school and quit my job for 6 months. i feel u, lemme know what u decide.

Re: Information regarding Surgery

Hi Jonathan,

It is a deep, personal decision. If you've tried several medications already, chances are very high that you won't get seizure control through other meds.

In my case, I tried many different meds. Suffered major side effects and lack of seizure control, so that made my decision pretty easy. My epileptologist leaned towards temporal lobe resection, saying that it was the best chance of seizure control. I went for it in March 06. So, it's been 7 months. I have had three or four deja vu's (but not intense, nor did I lose awareness) since, about 3 months after the surgery, but I have remained seizure free since....a major improvement! For me, it was worth it. There are many things to overcome after the surgery. It isn't easy at all. But, for me, it was the best decision.

I wish you the best of luck, take care!
Heather :)

Re: Re: Information regarding Surgery

I prayed about my decision and I have deiced to have surgery. My surgery date is 11/17/05

Re: Re: Re: Information regarding Surgery

I wish you the very best of luck, Jonathan. You will be in my prayers for a successful surgery and rapid recovery...take care!

Heather :)

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