Simple-partial surgery, seizure-free for five weeks!

[ericaegge]

Hi! I'm Erica. I'm new here and just wanted to introduce myself.

I was diagnosed with simple-partial epilepsy when I was seven. It originated in my left intertemporal lobe, right between the motor and sensory strips. When I have a seizure, my right hand clenches up and shakes for about ten seconds and has a very distinct, hard to describe sensation. My MRIs have always been clear and they never knew what caused it.

I tried tons of medications (Dilantin, Tegratol, Keppra and Depakote in the past, Lyrica, Vimpat and Lamictal XR), but nothing worked, I was still having seizures almost every day.

After eighteen years, I finally decided to have surgery. I started my testing in November, 2010, and finally had surgery in January, 2011. Because my MRIs didn't show the doctors where the problem was, I was to have two surgeries - one to place a grid of about a hundred electrodes on the surface of my brain to monitor my seizures for a few days, and a second surgery to remove the electrodes and, if they were able to find where the seizures originated AND if it was in a safe place to operate, they would resect the origin point of my seizures. The day before the first surgery, the neurosurgeon told me that I had a 25% chance of being seizure-free for the rest of my life. I had thought it was a 60% chance, and hearing him was like a blow to the stomach, but I had come that far and didn't want to back down, so I signed the consent form and it ended up being one of the best decisions of my life.

I spent a week and a half at Mayo Clinic in Rochester, MN, and five weeks later, I haven't had a single seizure! It's really amazing.

My case was a difficult one because of the location of the seizure origin and the fact that they could't find it on any MRI, but despite the odds, it worked! If anyone is looking into surgery and has questions, let me know, I'd love to help! I've been chronicalling my surgery since the day I decided to have it all the way through my recovery now on my blog: livinginabrainstorm.blogspot.

[Nakamova]

Hi ericaegge, welcome!

Its' always great to hear success stories, and it's nice to hear yours. A number of CWE members have had surgery or are contemplating it, so I;m sure they will be happy to have your input.

Have you had to take medication since the surgery, or are you med-free as well?

Best,
Nakamova

[ericaegge]

Thanks, Nakamova!

I'm still on my meds, but the doctors have said that as long as I remain seizure-free, I'll be able to wean off of them over time. "Over time" means a couple years, but compared to probably fifty-some-odd years on meds, two or three is pretty great!

[Cint]

Hi Ericaegge,

I had two brain surgeries also, the first was placing the electrodes on the surface of the brain to locate exactly where the seizure were coming from and the second was the lobectomy. After my lobectomy, I too was seizure free for the first five weeks, even 5 months, but after 14 months--- BOOM! The seizures came back like a time bomb and have had a difficult time controlling them. They were just simple partial and complex partial before surgery, now they are simple partial, complex partial and tonic clonic but I have had help with the VNS now.

I do hope you have much better success.

[ericaegge]

Cint,
I'm sorry about your seizures returning. How is the VNS working?

[Cint]

The VNS is working for me, along with two anti-epileptic drug's. I do wish I would have had that procedure done before brain surgery. I can't get my memory back, plus many more issues I've suffered since the lobectomy.

They used to say one has to be seizure free for two years before they can tell if the surgery works or not and whether they can be weaned off medication.