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Just starting evaluation...

I'm about to start the first phase of evaluation for being a surgery candidate at the Cleveland Clinic, I've had complex partial seizures most of my life, tried almost all of the meds, and I'm now 46 years old. My seizures were never controlled, and lately have gotten more frequent, as many as one every 2 to 3 days. I believe they start at the left temporal lobe. Luckily, I've went to college and have a successfull career. Does anyone know what percentage of patients who are evaluated can even have the surgery done? How do you find out if the Cleveland Clinic has a good reputation? I'm TERRIFIED of surgery, but I know life could be SO MUCH BETTER without seizures. Any encouraging words would be deeply appreciated. Rosalie

Comments

Re: Just starting evaluation...

I can't help with your specific questions, but hopefully my "experience" can provide you with some general information. I had an RTL 4 years ago, and my pre/post-op experiences are outlined at the following link:

http://www3.ns.sympatico.ca/kkehoe/epilepsy/main.html

Kevin

Re: Re: Just starting evaluation...

I am just a few days off 1 year since my surgery left temp.lobe. At this stage whilst you are going through the tests to see if you are suitable for surgery, try not worry about the surgery itself. I know it is easier said than done,I still remember thinking,that there was no way I was going to let anyone cut my head open and mess with my brain. You also want to have an attitude of you will not make up your mind, as to whether you will or wont have the surgery, until such time you are presented with all the facts and what percentage chance you have of successful surgery.If you have a good surgeon they will not touch you if there is any probable danger in surgery.
I had surgery at age 44, and to date, I am going well. If you have had epilepsy from a very young age, it is possible, like me, that the right hand side of your brain ,takes over the things normally done on the left hand side of your brain.
Possible problems resulting from the surgery are:
short term memory problems, tip of the tongue-losing a word , some periphiall vision problems can occur. But when you wiegh everything up, would you rather possibly have some of these problems or have a life of uncertainity not knowing when you will next have a seizure.
Good luck in your tests
Aussie

Re: Re: Re: Just starting evaluation...

THANK YOU SO MUCH for those encouraging words. That was my exact thought... nobody is going to cut open my brain!! You are also correct in saying that I am worring without knowing enough of the facts.

Rosalie

Hi, When you see your

Hi, When you see your specialists, and they ask you " will you have the surgery, or how do you feel about surgery"? tell them that you are not making your mind up one way or the other until you have all the facts. Ask all the questions you want, no matter how trivial you think it is, remember, its your future at stake- not theirs.When you go to see the surgeon , have a list of questions ready, you want to ask. But whatever you do, dont worry yourself about what " might" happen, face each bridge as you come to it,you'll find you cope a lot better if you can manage this.
Best of luck Aussie- ( From Australia)

Re: Just starting evaluation...

I just went through it on 1/25/07. For me, my grid test proved disappointing and showed my speech function was in the way of my hippocampus and they couldn't remove it so now I have to live with the seizures. The grid surgery was a headache, but not one that you can't survive. It has been 3 weeks ago today since the 1st placement and 5 days since the removal of them. I am home and doing well. I have 42 stitches and no hair but, hey, grows back. Now, they are presenting me with the possibility of a vagal nerve stimulator. Does anyone know about it?

Hi Rosalie, First off, to

Hi Rosalie,

First off, to nix the idea of being terrorized, I'd suggest you do some reading.
It isn't just the % that are 'able to have' the surgery to consider. Surgery isn't always effective & success statistics depend on the type of E.

http://www.epilepsy.com/epilepsy/surgery.html is a good overall place to read as you'll get a medical explanation of the tests, risks, & success % in regard to surgery.

Like yourself, I had E almost my entire life.
I had my surgery just over a year ago & ,since that time, no seizures to my knowledge. However, I refuse to celebrate any victory until I'm completely off AEDs and seizure free.

I would encourage anyone able to have surgery to give it a try.
The risk is definitely worth it.

Hi mulleca,

Here is info on vagus nerve stimulation (VNS):
http://www.epilepsy.com/epilepsy/vns.html

hope that helps,
~sol

Re: Just starting evaluation...

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