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Old 03-03-2009, 05:54 PM
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Advice on getting brain surgery


Hey Guys
Im new to this forum so i dont know if im right in making a new thread here but im just looking for some advice. Im a candadiate or brain surgery onmy left temertal lobe and have had petit mal for the last 15 years. Have seizures maybe once every 5-6 days or more or less depending etc.
Have a pretty good life but i dont drive cos of the seizures(not too bothered about that). On Carbamazepine, Levetivacetam and Topirmate but have tried Lamotrigine and Sodium Valproate.
What Im looking to know is is it worth risking a pretty normal life for what could be a better life or the same life but worse i.e side effects from the surgery.
Also it is worth doing it pending the unsuccessfulness of it considering the forums that are out there.
Any info you have is greatly appreciated.
Rude Awakening
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Old 03-03-2009, 06:35 PM
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Hi Rude Awakening,

That name is very appropriate for me. I had a left temporal lobectomy back in 1990 and I was seizure free for 14 months after surgery. Before the surgery, I was having complex partial seizures, 3-5 a day for 5-7 days in a row. When the seizures returned after surgery, they were complex partial with tonic/clonic (grand mal). That was a Rude Awakening for me!
Along with more seizures, came depression, memory loss, and aphasia (difficulty finding words).
But that surgery was a long time ago and some say it has improved, so it's up to you, but if your seizures are only once every 5-6 days, maybe you should reconsider.

Cindy
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Old 03-03-2009, 07:48 PM
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When I had the lobectomy it was a mistake, causing it just made things worse.
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Old 03-03-2009, 08:38 PM
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I usually get about 5 or 6 seizures a week. More when things aren't going so well but they're partials & I would never consider getting surgery. For me the cost of memory & how it doesn't guarantee making anything better is not worth a gamble that cannot be undone.
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Old 03-03-2009, 09:11 PM
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Hi Rude Awakening,

I have a friend who went through the surgery and has had optimal results. I have met a few others who also went through the surgery and have done extremely well.
However, as we all know, that outcome is not guaranteed.
I also know someone who went through 5 VEEGs and finally said "enough". She went off of her medications and is controlling her seizures with nutrition and exercise.
I just went through a video EEG to see if I was a candidate--the seizures start too deep for them to find a focus point so they said if I was to continue, they would need to surgically implant the electrodes and do further testing.
I stopped there.
My personal opinion is similar to yours...I lead a very blessed life. I drive, I am a mother, a wife and have loving friends and family. Yes, I have seizures, am exhausted from the medications, deal with side effects, and am in bed by 8:30. There is no way I would chance giving up what I do have for the unknown. Instead, I am giving 100% of myself to enjoy each moment as much as possible.
Each of us has to weigh our lives to see where we can find balance. If the surgery could help to bring your life to a better place, you may want to consider it--a seizure every 5-6 days is a fair amount.

Best of luck with your decision!
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