Re: [epilepsy] considering surgery...thoughts???

Wendy,

I had surgery back in 2004 on the left temporal lobe. I went nine months
after the surgery before I had another seizure, but they did start back. The
seizures are not near as bad as they used to be, so even if they are not
stopped completely, I am not having 25 a month.I have on average 1-2 a
month.I was in the hospital for 2 days after the surgery and they let me
come home when everything was checked ok. It took about 2 weeks after I got
home for me to recover completely.I had been through all the medicine that
was available back then, and being on toxic levels too. The medicine I am on
now has been reduced some too. If you decide to go through with the surgery,
I hope it works out for her. Take care.

Tammy

On Wed, Apr 21, 2010 at 8:04 AM, Wendy Baur <wendy.sue@gmail.com> wrote:

>
>
> All,
>
> Julia is now 2 years and 6 months old. Julia was born with a
> brain tumor that gave us infantile spasms we got those under control
> with vigabatrin (not FDA approved but, we got on a study). Julia is
> currently on vigabatrin 325 mg/day, 300 mg/day of Lictamal and 250/day
> of kepra and Julia's seizures are STILL out of control 3 - 4 a day and
> each seconds to 30 minutes in duration they are myoclonics and she
> doesn't turn blue so we give diastat at the 30 minute mark. We were
> going to John's hopkins but, they weren't agressive enough in my
> opinion throwing different drugs at us isn't good enough for me.
> Honestly I think there should be some form of rime or reason why a
> specific drug is given over another and I am not happy given choices
> between drug A and B. I am a software engineer which is the
> furtherest thing from medical / drug knowledge so, how should I know
> if drug A is better then drug B for Julia.
>
> 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.
>
> Thanks TONS!!
> Wendy
>
>

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