Whoever,
My unsuccessful L. temporal lobotomy was in 1996. I was sent to see Dr. William Theodore at NIH to have a test performed. On Fri. 3/30/07, I saw a number of doctors speak at NIH at a seminar titled; Curing Epilepsy 2007. I had a seizure there at NIH and was sent by ambulance to another nearby hospital for no need other than the hospital billing me and then the physicians bill. They did nothing besides to draw blood to test my medication level. That happened the day before Epilepsy Foundations first Walk For Epilepsy, on the mall in Washington, D.C.. My epilepsy has remained uncontrollable since diagnosed with epilepsy in 1974. At least I don't feel like a caveman, just a guinea pig using prescribed drugs.
Tim B.
--- On Wed, 8/5/09, Matthew <matthewford@
From: Matthew <matthewford@
Subject: [epilepsy] Re: brain surgery
To: epilepsy@yahoogroup
Date: Wednesday, August 5, 2009, 2:53 PM
When I had my first surgery 1986 things were very primitive! No such thing as an MRI. Just a Cat Scan and Pet Scan (similar to a Cat Scan but in color, showing the brain signals at work). No way to tell how deep it is, but the scans show it's right under this spot on the scalp. I was NOT promised I'd be seizure free, but was told any thing's better than what I'm living with now (14-15 Grand Mals a day).
After the surgery, I still had seizures but they'd reduced to once every couple of days, which over time broadened out to going a whole week seizure free. In 1988 I was experiencing seizure free periods for about 5 months at a time, but by 1990, I was seizure free for a whole year and finally allowed to get my driver's licence in 1991!
My Doc started reducing my pills to a more comfortable level until 9 years later (2000), when the seizures slowly started to come back. Every few months soon changed to once a month.
In 2003 it was once a week where I finally had an MRI showing the stuff I had removed had healed over like a bridge, connecting the two sides again. Having it done more extensively this time, I was told I should be seizure free for about 10 - 15 years before it needs doing again. They compared it to the filling of a tooth... eventually it breaks down and needs doing again.
Matthew Ford
Victoria, BC, Canada
--- In epilepsy@yahoogroup s.com, "no_seizures_ since_surgery" <stephenpales@ ...> wrote:
>
> Hi Joe,
>
> Yea, back in 2001 was like caveman as compared to the amazing technology of today. In itself just look at how much information in an MRI test today is shown as compared to then. That in itself is so so amazing. These days when one thing comes to market, its already being topped by something coming soon! Take care, keep a smile on your face!
>
> Steve
>
> --- In epilepsy@yahoogroup s.com, Pastor Joseph Groth <pastorjwgroth@ > wrote:
> >
> > Hello,
> > When I had my brain surgery in 2001, I was told it was only a temporary fix.. And that most people with seizures who have had this kind of surgery usually had to return within 2-3 years to do it all over again.
> > God Bless!!
> > Pastor Joseph
> >
> > --- On Tue, 8/4/09, no_seizures_ since_surgery <stephenpales@ > wrote:
> >
> >
> > From: no_seizures_ since_surgery <stephenpales@ >
> > Subject: [epilepsy] Re: brain surgery
> > To: epilepsy@yahoogroup s.com
> > Date: Tuesday, August 4, 2009, 7:27 AM
> >
> >
> > Hi Ron,
> >
> > You mentioned "As for the surgery- there are NO guarantees- just promises". Just wondering what promises where you given? I've never heard anybody having surgery for epilepsy of a guarantee or promise that seizure will be gone, cured ect... Everybody I ever have been in contact with where told that seizures can't come back anytime in their life. Like you said, no guarantees, but, simply the that your surgery will stop seizures or reduce them or maybe not change them. And of course they just might get worse, we just never know. What people do use is guidance when the Drs. explain to you the % of chance in a person's situation, everybody is different. For I was told the % where 50% chance of no more seizures. 25% chance or reducing them & 25% chance of no change. And of cource, those numbers come from the their experience and research. Each persons situation are different, each persons scar tissue is different. After tests
our
> > done and we are told our situations, its then all up to us as far as going for it or not if we become a candidate for surgery. Also, if surgery is succefull, if seizures stop from surgery its the person who had surgery, their choice going further to reducing medications to rid a person of the side affects of them. My choice was to stay on them 100% as another hope of keeping me away from returning seizures. Like I said, I made the choice of both surgery and reducing meds. Well, I'm on the very lucky side of results, so far. To this day so far, no seizures but I know they can come back anytime, anywhere but for now, so far so good (smile). Take care, keep a smile on your face!
> >
> > Steve
[Non-text portions of this message have been removed]
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