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Medical Forum / Diseases and Disorders / Epilepsy / August 2006New hope for epilepsy
My son has had temporal lobe epilepsy for 16 years due to a removed benign brain tumor. He has had 3 brain surgeries and is not a candidate for tissue removal. About 17 months ago,he had experimental brain surgery. Neuropace is doing a study on a neurotransmitter placed over the seizure activity in hopes it will detect a seizure and zap it before it happens. So far,my son has not had a seizure since it was implanted 17 months ago. We are wary but hopeful. We've had a lot of disappointments in the past. But he has his driver's license back and a new car and,finally,a job. He was so debilitated at one point,he couldn't even work. You can read about all this at http://www.mayoclinic.org/checkup-2006/track-jan.html Janie > My son has had temporal lobe epilepsy for 16 years due to a removed benign > brain tumor. He has had 3 brain surgeries and is not a candidate for tissue [quoted text clipped - 8 lines] > http://www.mayoclinic.org/checkup-2006/track-jan.html > Janie Howdy Janie! First: I hope the Neuropace system works for him. Second: Just because I can not do the same things that other people do does not mean that the situation is "HOPELESS!" The debilitation that you are talking about is largely a STATE OF MIND. It takes time, but acceptance of the fact that one has epilepsy and may be prevented from doing some things is necessacery. Once you are in a new game you need to accept the fact and learn the rules of the new game. If you refuse to do that you only end up by debilitating yourself because you are attempting to apply the rules of the old game to an entirely new situation. He lost his driver's license -- so what! I've never been allowed to drive. Unless a person accepts the fact that some things in their life are going to change, they will always be "debilitated." It may mean that one needs to live in a big city with a public transit system. It may mean that one needs to develop a transport network for themselves. There are all sorts of alternatives. (I chose the city/public transit option myself.) Just because you can't do things the way you used to do them does not mean that you are incapable of doing anything! Dave > My son has had temporal lobe epilepsy for 16 years due to a removed benign > brain tumor. He has had 3 brain surgeries and is not a candidate for tissue [quoted text clipped - 8 lines] > http://www.mayoclinic.org/checkup-2006/track-jan.html > Janie Howdy Janie! First: I hope the Neuropace system works for him. Second: Just because I can not do the same things that other people do does not mean that the situation is "HOPELESS!" The debilitation that you are talking about is largely a STATE OF MIND. It takes time, but acceptance of the fact that one has epilepsy and may be prevented from doing some things is necessacery. Once you are in a new game you need to accept the fact and learn the rules of the new game. If you refuse to do that you only end up by debilitating yourself because you are attempting to apply the rules of the old game to an entirely new situation. He lost his driver's license -- so what! I've never been allowed to drive. Unless a person accepts the fact that some things in their life are going to change, they will always be "debilitated." It may mean that one needs to live in a big city with a public transit system. It may mean that one needs to develop a transport network for themselves. There are all sorts of alternatives. (I chose the city/public transit option myself.) Just because you can't do things the way you used to do them does not mean that you are incapable of doing anything! Just to show you that I know where he's coming from... It sounds like he may have arrived at the "My life is ruined!" stage of acceptance. My stages were: Epilepsy! -- What's epilepsy? Refusal (No I DON'T have epilepsy!) Why me? / Why is God punishing me? I'm some sort of freak! / My life is ruined! / I can't do any of the things that I want to do! OK I have epilepsy... Guess I'm going to have to learn to live with it! -- Now I'll find out who my REAL friends are! I am not an epileptic, I'm a person who happens to have epilepsy! -- Lots of great people have had epilepsy! Life goes on. Epilepsy/epileptic what's the big deal? People with diabetes are diabetic; people with asthma are asthmatic. It's just a word... Epilepsy is just one facet of what makes me ME! -- This is ME, take it or leave it! Dave > My son has had temporal lobe epilepsy for 16 years due to a removed benign > brain tumor. He has had 3 brain surgeries and is not a candidate for tissue [quoted text clipped - 7 lines] > You can read about all this at > http://www.mayoclinic.org/checkup-2006/track-jan.html That's really a heart-warming story, Janie. Here's hoping that all continues to go well for David and I wish him and family all the best!
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