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Old 05-20-2011, 12:45 PM
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Has Anyone Considered Surgery?

Yesterday, I went to see my epileptologist (neurologist specializing in epilepsy) after having a faint spell. Their first reaction was that it was an epileptic seizure, although I did not believe it. They also informed me that during my last ambulatory EEG, consisting of 2 whole days, I had five seizures. After showing frustration for their failure to inform me, I questioned what I needed to do to control my epilepsy. Their response - surgery.

A few years earlier, I weighed the options of surgery and thought it would be a good idea. After having a 12-day long EEG monitoring with vague results, I chose not to have the surgery because I thought it would cause more bad than good.

I'd like to take back control of my own body, instead of being internally electrocuted.
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Old 05-20-2011, 05:37 PM
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Surgery is a huge step, so make sure you have as much information as possible before signing up. Ask your doctors what's involved, especially what the statistics are on the various outcomes. I think before you can actually have surgery they need to perform a variety of tests to make sure the origin of the seizures is localized, and can be operated on without damaging surrounding tissue.

Different CWE members have opted for surgery with mixed results, so I hope they chime in soon.

Here's CQ's thread about her surgery:
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Old 05-20-2011, 06:26 PM
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I have a 72-hour ambulatory EEG coming up in a couple of weeks. You said you had 5 seizures during your 48-hour ambulatory EEG?...were you aware of each of them when they occurred? I ask because my seizures are 'dizzy spell' complex partials, too, and mine are sooo few and far between that I worry nothing will show up in a 72-hour span.

As far as surgery goes, I'm not sure if I'd be brave enough? Then again, if this abnormal electrical activity is causing my OCD, too (and not just these seizures), yes, I think I'd try OCD is that severe.
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Old 05-20-2011, 06:52 PM
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Hi Flex,

As Nakamova said I chose to have the surgery to help with my seizures.

It was 18 months ago that my neurologist suggested that I think about having surgery as an option after trying a variety of different Anti Epileptic Drugs which didn't help control the seizures.

When my neurologist brought up the subject of surgery I discussed it with my parents & spoke to my siblings about it, I had the support of my family & friends. I also did as much research as I could into the epitiologists I was referred to, the hospital & the surgery.

Before I could be regarded as a candidate for surgery I had to go through a series of testing - PET scan, SPECT scan, MRIs & 1 week stay in hospital for Video EEG monitoring.

On March 10 I had a left anterior temporal labectomy to remove scarring on the left side of my brain. So far everything has been going well but I still take each day as it comes & at this stage making sure I dont over do things. I am due to have my 3 monthly checkup at the end of June.

Last edited by CQ:); 05-20-2011 at 06:55 PM.
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Old 05-20-2011, 08:49 PM
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I had a left temporal lobectomy 20 years ago and was seizure free for 14 months, then they game back with vengeance- complex partial and tonic clonic seizures along with depression. I had to go thru the Brain Mapping and WADA testing before surgery. Nine years later I had the VNS (Vagus Nerve Stimulator) surgery as a last resort. Here are some websites that explain these:

Before you undergo any surgery, carefully examine the pros, cons and get several opinions and all the testing that is needed.
"The Golden Rule is that there are no golden rules."
~George Bernard Shaw
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Old 05-21-2011, 02:42 PM
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My epileptologist at clevclinic is big on that-pamphlets everywhere! But the prep is too much and the odds just arent that great in my situation.Maybe when my kids are older or if things get worse or meds arent holding them
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Old 05-21-2011, 08:55 PM
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Because of where the damage was to my brain I was unable to have brain surgery.

My neurologist suggested a VNS implant and I got one about 3 years ago. I still have to take medicine and I am still having some seizures.

The seizures are NOTHING like I was having before I got it. I would have, I don't know how many seizures a month, probably at least 10 or more, and they were very seviere. They would probably last at least longer than 10 or 15 minutes and I had to go to the ER for several of them. I would loose memory after them, I wouldn't even know what I did that day I had one.

Since I've gotten the implant I get maybe 1 or 2 at the most a month, and sometimes I'll go a whole month without having one. The seizures are nothing like they were before either. They only last maybe 5 minutes at the longest. I do still have memory loss, but it is for longterm memory. I'll start to forget things that happened months to a year ago which I know is common with people with epilepsy.

If you have any questions feel free to ask!
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Old 05-24-2011, 08:50 AM
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Originally Posted by elizzza811 View Post:
I have a 72-hour ambulatory EEG coming up in a couple of weeks. You said you had 5 seizures during your 48-hour ambulatory EEG?...were you aware of each of them when they occurred?
I was so relaxed sitting at home during that time that I didn't notice the time gaps between them. Most of them were while I slept, but they said one I was awake for, which is the one I have trouble recalling.
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Old 07-30-2011, 03:36 AM
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I did the craniotomy. I had a lot of GTCs back then, they were focal. I was one of the very few who got an infection with cancer cells a year later and went into status elepticus. I am ok now But I now have more seizures than I ever had. So I am up for VNS. Went to see the surgeon today. I am going to think a lot about it before I do it. I think there should be another MRI before its done.
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