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#1
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Hi Everybody (NEW)I'm in 2 minds at the moment I'v had epilepsy since Iwas 7yrs at moment I have around 6/7 a month. Look forward to hear from you. |
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#2
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Welcome Alan I haven't had the surgery but there are quite a few people here who have. You might want to check out this thread first Surgeries on epileptics Personally I see it only as a very last resort. It may or may not help & you won't know until it's done. One usually does have to re-learn certain things after as well. I'm rather cynical because I've had doctors try to convince me to have the surgery & they didn't even know what was causing my seizures. Just sort of cut & hope for the best. I would recommend you ask exactly what they're doing to what part of the brain & how that is supposed to help before making a decision.
__________________ "It's no longer a question of staying healthy. It's a question of finding a sickness you like." -Jackie Mason |
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ALAN (10-20-2010) | ||
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#3
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| Hi, Alan, Welcome to the forum! I'm glad you found us. The people here are wonderful - supportive and lots of knowlege. They've helped me a lot since my diagnosis. I'm guessing your seizures are Tonic-Clonic? I haven't had the surgery, but a few in here have. Some sucessfully, some not. They'll drop into the forum soon. You may want to talk to Cint, in particular. Maybe they can also suggest some questions to ask your neurologist/neurosurgeon so you will have the information you need to make an informed decision. This is a really big decision, so don't let anybody rush you into it. YOu have plenty of time. There are several other ways of treating seizures. Like a VNS. Take your time and choose whatever path of treatment you think is right for you. Ah! Questions for the doctor: - What are all the options for treating my seizures, and what are their success rates and odds of experiencing the possible side effects? - Why do you feel surgery would have the best outcome for me? Again, welcome. I''m so glad you are here! |
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ALAN (10-20-2010) | ||
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#4
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| Also, when they tell you what percentage were "successful" remember to ask ask how long after the operation the statistics were taken. Frequently peoples seizures do stop for a few months but return later. If the stats were only taken 3 or 6 months after the operation then that may not be too accurate.
__________________ "It's no longer a question of staying healthy. It's a question of finding a sickness you like." -Jackie Mason |
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ALAN (10-20-2010) | ||
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#5
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![]() Welcome Alan
__________________ Character is doing the right thing when no one is looking. |
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#6
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| Hi Alan, welcome! With epilepsy, information is your friend, especially when considering surgery. Don't be afraid to ask your doctors a lot of questions: Can they give you long-term success rates? How many of the surgeries have they performed? Are there any patients they have operated on who would be willing to talk with you? Will you still have to take meds after the surgery. What are the risks? I hope you have a family member or friend who can attend the appointments with you, and help you to make a decision. Best, Nakamova |
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#8
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| HI Nakamova glad to hear from you, like you say every bit of info helps I've already got a list of questions which is getting longer by the day,Like one doctor said this is one op that cannot be revearsed and have already been told there's no gaurantee.Like you say a lot to think about Best wishes ALAN |
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#9
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| Hi endless Thanks for the reply it was very helpful,Like you say it isn't a decision to make lightly The siezures I have aren't "gran mal" they last about 3/4 minutes and if i'm not sat down then I will fall usually cutting my head open. After having a seizure i'll feel really depressed for 24hrs.I've already got a list of questions which is getting longer every day.I've had epilepsy for more than 50 yrs now and tried just about everything I suppose if I say no I could always change my mind later but if I go forward with the op then theres no turning back .Like you say it isn't an earsy decision to make Thanks again ALAN |
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Endless (10-21-2010) | ||
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#10
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| Hi Alan, welcome to the forum. ![]() There are several members here who have brain surgeries with various measures of success. I'd suggest reading through The Laboratory for more on their experiences. I also posted some info in my chart about it: Temporal Lobectomy.
__________________ New to CWE? I suggest reading the proactive prescription and epilepsy 101 threads. Also check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. More great stuff can be found in the list of the best forum threads. Would you like to help support this forum? |
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#11
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| Hi Alan - welcome to CWE Occasionally we had people suggest Rebecca be tested for surgery, and we never did. I am glad because she has been seizure free and med free for six+ months now, just by making nutritional changes.
__________________ Robin Neurofeedback - Rebecca's Story Feedback Matters- blog Knowledge is power and knowledge shared is power multiplied. -- Bob Noyce |
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#12
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| Hi Alan...I am new here, too but I am sure that you will find the answers you are looking for. I have not been recommended for surgery, but have known a couple of people who have had surgery for intractable epilepsy and some have had good results (less/no more seizures and retention of memory/abilities). I hope you enjoy the forums and get the answers to your questions that you need. If my doctor recommended I undergo a left temporal lobectomy, I would ask about success rates, expected outcomes, if there are alternatives (VNS maybe?), what to expect as far as rehabilitation/recovery times, and so on. |
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ALAN (10-23-2010) | ||
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#13
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| Hi Minkels Thanks for the reply I've had epilepsy for more than 50 yrs trie just about everything and surgery seems to my last option Like you I've got quite a few questions to ask the doctor when I see him next month So far I haven't found many who have had the operation and regretted it (I suppose thats a good sign) But like they say it isn't a decision to be taken lightly. one thing that worries me most is the thought of deppression after the op,if that was permanent it could be just as bad as epilepsy!. Thanks again ALAN. |
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#14
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| Welcome! |