Hi Shan,
Noticed your inquiry and several interesting replies too. I
had left temporal surgery 12 years ago. It completely stopped
all seizures which occured during the day but I began getting
seizures when asleep. I still get this and I am still on drugs,
presently Lamictal. It was the right thing to get the surgery
definately since being without any seizures during the day after
having them for over 30 years, is a super positive change. It made
it possible to get my driving license too, and that was special
to me too. I had lost my license when I was 17 years old and
had a dilly of auto accident. Think positive and use the
availability of this surgery as a great option for you.
Good luck.
Doris
--- In epilepsy@yahoogroup
>
> Do you know what the percentage is of people whom get worse?
>
> I had met only 2 epileptics before that had had surgury. One had temporal lobe seizures but not convulsions and I last talked to her 8 months after her surgury and she had not taken any medication since her surgury and had not had any seizures. The other person I met had temporal lobe seizures too - she has had 3 operations and her seizures got worse after each one. Now she couldn't even walk down the driveway to her house without wearing a helmet and she had convulsions everyday. She couldn't do any housework at all , nor make meals, nothing. When she applied for social service, they had to go out to her house to interview here, and she even had a convulsion while there were there. This was 10 years ago, and I had been thinking about surgury. However after meeting this lady decided that it was too risky, so have been very interested in what people say here and their experiances.
>
> blessings
> Shan
>
> --- In epilepsy@yahoogroup
> >
> > Wendy,
> >
> > Lets just get right to it. 40% of people who have surgery become
> > seizure free, 90% see a great reduction in seizures, and 10% see no
> > change. For me, the decision was easy because nothing else was making
> > any difference so a 40% chance of seizure free was better then the 0%
> > anything else was giving me. It has been 2 years since my right temporal
> > lobectomy. I am not seizure free (complex partials) but have seen a
> > great reduction in my seizures, though they are beginning to get worse
> > again. We are considering a VNS.
> >
> > Pain-yes lots of it. Narcotic drugs are used and they basically make you
> > feel like you don't care you are in pain. They knock you out most of
> > the time. They have to be managed very carefully.
> >
> > Recovery-making sure meds are scheduled and never missed. Little to no
> > noise.
> >
> > Just the basics =)
> >
> > Kelly P
> >
> > Wendy Baur wrote:
> > > We took Julia to Children's in DC on Monday and now have a
> > > plan..Finally a 23hour VEEG scheduled for 7 May. We know that Julia's
> > > seizures are focal so, we're on our way to surgery I hope. I would
> > > like to hear form those who have had surgery. How did you feel after
> > > surgery? Were you in pain? What helped your recovery? How long has
> > > it been since your suregery and how does your surgery area feel now?
> > > What did your doc say about seizure control after surgery (ie chances
> > > of 100% control 90%, 80%). I know 100% is a pipe dream and honestly
> > > I would be happy if I saw 1 seizure a week.
> > >
> >
>
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