Hi. I was diagnosed with epilepsy when I was 18 (now 30) have been on Keppra, Carbamazapine, Lamotragine, Topramax, now been told am going on to Zonisamide. Had a lot of hassle with Topramax, was put on a high dose & it caused a side effect called ketosis (unable to eat for about 6 weeks) now been told that they have found the exact spot where my epilepsy is, I have absenses (petit-mal), have scarring on the brain, maybe caused when I cracked my head open 25yrs ago. Have been told I am able to go to London for tests & if they can pin-point the EXACT spot then I am able to have surgery to remove the epilepsy, scared as I have 2 children. Does anybody know much about this, how long the tests take etc? How long the surgery takes etc? How long I would be in hospital for on both occasions? Thanks.x

I had a right temporal lobe lobectomby in 2002, I had scar tissue on the right side of my brain which they removed. I started having seizures at age 11, and dealt with them most of my life up until I was 39 that's when I had surgery.

The testing it self all depends on how fast they can get the results they need. I had to stay in the hospital for 10 days, because they wanted to see me have at least 3 seizures and record them so they could try and pin point the location of the seizures. After all my ct scans, mri's, pet scans, wada test, eeg seems like the list never ends, lol then you go home and wait for a date for the surgery.

The surgery itself, I was only in the hospital 4 days. The recovery is different for everyone, it took me a couple of months to get my strength back. I think 6-8 weeks is about right. There are some side effects from the surgery, but the only thing I dealt with was some depression other then that it was the greatest thing I have ever done. God is good, I prayed for years that the seizures would stop and they did by the grace of God. I wish you well, keep me posted on your decision.

cindy4hope

Hi! Like Cindy said the length of time can be different for everyone. I've had it since childhood-went to a learning hospital-and had to change the way I took my meds-and the type I took-take all those tests so the dr's that study your case can determin if you'd be a candidate for the surgery. The actual surgery is at least 5-6 hrs. The 10 day testing that Cindy wrote about is an extended EEG-where they taper you off your meds to make you have a seizure so they can get readings of it. The WADA test you may spend the nite. You have to lay still for several hours after the test. Chat with your Dr-ask them all the ? you want-make a list. If you want more info let us know. It was successful for me. Have been 3years w/o a seizure. cherie

Thanks to both of you for your replies which helps a lot, as I said I have been epileptic for 12 years & not 1 day has gone by when I haven't had a seizure but I am lucky in which I don't have full blown seizures. Thanks again for that, will def keep you posted.x

when you say you don't have full blown seizures are you having simple partials? I had complex partial seizures, I always had an aura right before my seizure, I would get this roller coaster feeling in the pit of my stomach.

I didn't have seizures as often as you, there were times I went for a year or so without having a seizure. or at least months at a time, then as I got older they became more frequent, they did not change just visisted more often then I wanted, lol.

I am driving and have my freedom back, it was worth everything thing that I went through. I am married and have 3 daughters. wishing you the best!

Cindy4hope

Hi, yes I have petit-mal seizures, approx between 5 & 10 a day, every day which can get me down but have to get on with it, I take my tablets, nothing else I can do which is why the specialist wants to have me go for the tests, I have 2 children, boy & girl, daughter isn't really aware of it, but my son is very aware of it, the seizures last less than 2 minutes so he always knows if I am bad, unfortunately if I am concentrating on something, watching a programme on tv etc & I don't answer him straightaway he thinks I am having a seizure bless him!
I also get a weird feeling, not all the time but sometimes & if I get that feeling then I have time to sit down or stop what I am doing before I have a seizure.
I hope I get the same outcome that you have done.
Thanks loads cindy4hope.xx

Amazing how different everyone's seizures can be. Mine could be 0 to 3 a month-and if spread out-at least 1 per month. Cherylemma-are you married or have family/friends that can help you if you begin all the tests? It sounds like your son watches over you! Like I said before-if you have ? ask and I'll try to help. Good luck when you talk with your neuro. take care, Cherie

I have my family around me, my 2 children & fiancee, sister & niece live next door, mum & dad 2 are a 5 minute walk, friends close by, Paul-my fiancee, says that when I go for the tests (if I go as not def decided yet) he will come with me. My son is very protective of me, he's grown up with it, my daughter doesn't understand like Matthew does. Sometimes I think he worries too much for an 8yr old, if I'm bad he'd rather be with me than out playing with his friends like a typical 8yr old.
Thanks cher1052

Aren't kids amazing! He reminds me of my mom-she was always over-protective of me when she was alive! (knowing her-she probably still is) It's good that you have family/friends close by if you need help. Cherie

Francilia-You can research the WADA if you want. You'll lay very still as the test is done-there will be 3 Dr there-and you'll be asked questions and told stories and be asked to tell the story. This test will be done 2x-so the DR can see which side of the brain has taken memorey,vision,etc. Then you'll lay still after the test. You'll hurt a few days-from the injection. But it's worth it! Cherie