I had tried so many AED's in 1999 trying to control my seizures- I lost vount. Since none of them were controlling my seizures i decided to have brain surgery- A right temporal lobectomy- I had contacted Encephalitis in 1964- I was 13. My brain was mapped- tey thought they know what part of the brain to remove to control the seizures. Well- I had the surgery- they had to reopen my head because they left an infection. Needless to say I am still having seizures- I have totalled cars because i thought I was cured. Well, I will NEVER drive again and I am still having seizures- not as many but enough. As for the surgery- there are NO guarantees- just promises.
Birdman Ron
andshadow@..
>
> Even when I had my deep vein blood clot (Thrombosis a.k.a DVT) and in the major arterie for my leg, my doctor said, "YOU COULDN'T PAY ME TO DO SURGERY ON YOU~You Have
> ' Behcet's ' !"
> Sent from my Verizon Wireless BlackBerry
>
> -----Original Message-----
> From: Tristin Seagraves <tristinspike26@
>
> Date: Mon, 3 Aug 2009 06:18:47
> To: <epilepsy@yahoogroup
> Subject: Re: [epilepsy] brain surgery
>
>
>
> Hi CBI,
> A good sugical candidate is someone who is experiencing 2+ seizures per month, someone who's seizures aren't controllable with AEDs, and someone who's seizures are coming from mainly one central location in the brain. After you've tried more than 2 different AEDs and you're still having seizures, chances are that meds aren't going to do the job.
>
> There's a lot of testing to take place before surgery. I went through 6 months of candidate testing, including MRIs, a PET scan, neuropsychological evaluation, WADA angiogram, Video EEGs, depth electrodes, grid electrodes, brain mapping, etc. etc.
>
> If you are referred to a neurosurgeon for candidate testing, it isn't elective. My insurance covered it all.... no questions asked.
>
> There are very few risks with this type of surgery; mostly infection. The tests will show which side of the brain controls language, memory, and speech (specifically the WADA angiogram). If your seizures are coming from the same side that your speech and language is on, they might not do surgery because it could cause a speech deficit. In most cases, the speech and language is on the left side but not always (mine is on the right).
>
> Surgery doesn't work for everyone, but I've never heard of it making seizures worse.
>
> I had my surgery at a "major medical facility"...
>
> For my surgery, I was out of work from Oct 28, 08 until Dec 1, 08. I had my surgery on Nov 12. From Oct 28 to Nov 12, I was hooked up to EEG with a camera in my face. We also did depth electrodes and brain mapping during the first two weeks. I was back to work quickly. My neurologist wanted me to take another 2 weeks off, but I was determined to get back in the groove.
>
> Just a few answers to your questions...
>
> I hope everything works out.
>
> God bless you,
> Tristin :)
> --- On Sat, 8/1/09, CBI <cbicook@...
>
>
> From: CBI <cbicook@...
> Subject: [epilepsy] brain surgery
> To: epilepsy@yahoogroup
> Date: Saturday, August 1, 2009, 6:43 PM
>
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>
>
> There has been a lot of reference to those having surgery. Can someone(s) explain what makes a person a candidate to have surgery? Is it the number of seizures one has, the location in their brain that they begin, inability to gain control using medications or what? I keep reading about these surgery's and don't know where to start to find out if it would work for me. How does insurance cover these? Is it considered elective? Is it beyond experimental. What are the risks? Could you worsen the level and type of seizures you currently have? Do you need to be at a major medical facility to have this surgery or are more and more hospitals capable of performing it?
> How much time must one take or have available to complete this process and continue back to work?
>
> I know these are a lot of questions. I'm sure there are some good WEB sites to explain it and I confess I have not looked at them yet. I'd like to get the group's opinion and recommendations on this process. Thanks.
>
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> CBI
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> Just a friendly reminder: Please remember to sign your post and remember to clean up messages when you reply to them. This is especially important if you are on digest. This not only helps out the list owner but, it makes messages much easier to read when they arrive in our inboxes.
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