I was diagnosed with epilepsy about 12 years ago. I had complex partial seizures where I would black out and do random things; anything from standing still to trying to continue what I was doing. Needless to say I didn’t get my driver’s license. After about 6 years and numerous drugs I hadn’t gone longer that 5 month without a seizure. My neurologist sent me for two weeks of test done in the Cleveland Clinic (nice place). They decided that since my seizures were covering several parts of my brain I wasn’t a candidate for surgery.
6 years later my seizures have changed; I don’t black out during them anymore but they are more frequent. I am still confused after I have one, so still no license. I just spent 3 days in the hospital after having a dozen seizures in one day that lasted anywhere from 1 second to about 1 minute. They were able to catch me having a few very brief seizures on an EEG (which can be tricky since it’s hard to guess when someone is going to have a seizure). Since these seemed to all come from the same areas (the temporal lobe) and I’ve had so many different medications fail, my doctor wants to have me evaluated again for a temporal lobectomy.
A temporal lobectomy is basically where the find exactly where the seizures start, (using everything from high imaging MRIs to EEGs where the electrodes are placed on your brain) and then cut that part off. :eek:
Umm . . . yeah . . . about that . . .
I am hoping to find someone who can give me some kind of reassurance here. I don’t really know the odds as to whether or not this would happen. I also know that even if it did it would be quite awhile before it happened. Still, the idea kind of freaks me out. Any brain surgeons or people who have had some kind of brain surgery out there I could chat with?
Yikes. That sounds scary. A good friend of mine is currently discussing a similar surgery with her epileptic son’s neurologist. So, no good advise from me, but I’ll be interested to hear more about your experiences! Good luck!
I can only offer reassurance. My father had a brain aneurysm and they gave him less than 10% chance of living through the surgery, much less afterward. And this was in 1974 so you can imagine what it was like then.
He made it through just fine, oddly enough he died in 1976 not of any brain problem but of a heart attack. Dad was a walking heart attack waiting to happen. No exercises, chain smoked, overweight, didn’t care what he ate.
I wish you luck and you have the knowledge that people can live and survive difficult surgery.
I am neither a doctor nor an epileptic, but I’ve long had a fascination with medical things. My informal research on such topics has lead me to the following conclusions:
With modern imaging techniques brain surgery of ANY kind is much safer, more reliable, and with fewer side effects than ever before. It’s still Very Serious Stuff, but much improved over the past.
Sometimes, the point where seizures originate isn’t functioning properly anyway and the brain has already re-wired around it. What this means is that if they take it out you might never miss it and might have no residual effects - other than (one hopes) a lack of seizures, which is what you want. Of course I can’t say that’s true in your case. I doubt even a neurosurgeon could determine that prior to surgery. However, in some cases such surgery is a win-win for the patient. Other times there might be side effects.
Really, you need to discuss this with your doctor
For further layperson reassurance - I’ve know about a half dozen people who have had brain surgery in my life. Aside from a scar on their head you wouldn’t notice anything different about them from watching them move around or talking to them or working with them. Any side effects they had they compensated for so well I couldn’t spot them.
Here’s hoping that if you have such surgery it’s completely successful. Then you’ll have to tell us when you get your driver’s license
Have you tried a 2nd opinion? When I was younger they didn’t do surgery for that reason. All the negative side effects. Not that I am saying your doctor is wrong it sounds like you have been dealing with this for a long time and when I was sick it was 16 years ago so things have changed but the side effects haven’t. I had radiation instead and blasted that shit out of my head. Sure our issues could be completely different . Surgery for me was in a very sensitive part of my brain right near my motor skills and I could of lost control on the left side of my body so surgery wasn’t an option. But for you it looks like they think it can work. Which is great!! I still have seizures and can’t drive till this day and never have (except once in a parking lot) Good Luck!!
I had a benign meningioma removed from my left parietal lobe just over two years ago. My MRIs since the surgery have shown no regrowth of the tumor from the tiny calcified scraps that remain. The large-ish C-shaped scar has become less and less noticeable even though I shave my head biweekly. I’ll keep taking carbamazipine indefinitely to control the focal seizures that led to the discovery of the tumor, but I haven’t had one since I began taking it in early 2006.
