Surgery

I completely agree that surgery can greatly improve the lives of people with epilepsy. I started having seizures at age 4, and by 19 I was stuck at home, unable to work or attend school. When I was 20 I had surgery. It helped a lot: with limitations I could go to school or work, and I was very happy. I got my life back. The problem is that the seizures came back without warning after 5 years (and for no clear reason). I've been trying to get them under control again but I haven't been too successful. I'm out of school again. I have no regrets about the surgery though.

I think surgery is an excellent option for some, but I don't think anyone should rush into it. It's horrible (...Though i've been told my experiences with a 3-stage procedure were much worse than normal), and there's no guarantee that it will work or that the seizures will be gone forever. Medication (same old deal with side effects) may still be required for years after surgery. Plus, function may be lost. I had to sacrifice some vision for better seizure control. I've never driven and will never drive (which is why i'm stuck living in new york).

Okay i'm really not trying to scare anyone off, I swear!! I'm 100% happy with my decision. Surgery can really help. For some it can even be a cure. I just don't think anyone should rush into it. If your epilepsy doesn't strongly interfere with your life, I think it's silly to let someone cut your head open. If your seizures are seriously affecting your life, consider surgery. But be smart about it. Make sure you find a good surgeon that specializes in epilepsy surgery and make sure he/she treats you like a person and cares about your quality of life. (some are quick to resect without caring about how much function will be lost.) make sure you know the risks for your case.

Mommy2: be careful for a while. Now it's time to learn how much you can handle and still be seizure-free. If you rush into doing a lot at once, you may have regrets. Take care of yourself and hopefully you'll be seizure-free forever. Best wishes.

Fantastic point of view! I'm sure it was rough to have that dark cloud creep back up on you. I have some big decisions ahead of me and it was a reality check when you said not to rush. You are so right, yet I feel like life's schedule is ready for the next fork in the road. Should I go back and teach or should I risk having another child??? I was ready to get pregnant, yet chose surgery instead. That stinks that everything came back after 5 years.

Did they remove a piece of your brain and where? Just want to compare the seriousness of our situations. Did the surgeon feel he removed what was necessary based on the electrodes? I did not have the 3 stage surgery due to a new pet scan developed. I understand your frustrations.

I had part of my left occipital lobe removed. I would probably be seizure free if the surgeon removed the whole lobe but I would have lost all the vision on my right side. To preserve some vision (i only lost 1/4 of my visual field) he instead removed just enough for the reduction of seizures. So who was given the choice of how much to remove? My parents!!! I learned years later that my parents were asked to make the decision. This really angers me since it was my life and I was 20 years old at the time. No one bothered to ask me.

Anyway, take it easy for now. I know it's so tempting to jump back into everything at once, but it will be much better for you in the long run if you ease yourself back into the life you had before. All the best.