My 19 year old son was having 30 complex partial seizures a day.
Meds did not work, vegas nerve stimulator did not work, tried
everything to get them under control but all efforts failed. His team
of neurologist reccomended long term monitoring and then invasive
monitoring to see if he was a good candidate for epilepsy surgery.
They said he had an excellent chance of becoming seizure free because
his seizures came from a single area of the brain and they were able to
locate it many times during their testing.
Worse case scenario was that his seizures would remain the same. He no
longer has complex-partial seizures with an aura/warning. Now he has
severe life-threatening convulsions
requiring immediate medical attention. He just drops in midair, oxygen
levels go as low as 20%, he turns blue, these seizures come in clusters
until 3-4mg. of attivan is administered by IV at a local hospital.
Local EMT/ambulances now know him well. They've saved his life numerous
times. We've been told he developed a second seizure zone after the
sugery and the doctors want to perform invasive monitoring again with
hopes of a second surgery.
We went for 3 opinions each time surgery is mentioned and all teams
agree it is his best chance.
Has anyone out there gone through something like this? Did they locate
the origination zone of these tonic-clonic seizures and did you have a
second surgery?
newz york
> My 19 year old son was having 30 complex partial seizures a day.
> Meds did not work, vegas nerve stimulator did not work, tried
[quoted text clipped - 20 lines]
> second surgery?
> newz york
Before agreeing the surgery is the only path, an irrevocable path with
horrendous side effects, perhaps you should consider another path first?
You could still always cut. Mind you, I almost died from a 10 minute
seizure.
Just for information, explore
www.drcarley.com
who was a noted trauma surgeon and is now perhaps the foremost expert on
vaccination related diseases. When I told her I was on dilantin her
immediate response was that they weren't dealing with the cause of my
seizures.
It's worth an exploration.
As far as the best centers, go to US News and World Reports, which
reviews who are the best. If I was going that route, I'd brave the cold
of the Mayo Clinic. But I'd first explore other options.
Bob
Sofia - 23 May 2006 21:49 GMT
> As far as the best centers, go to US News and World Reports, which
> reviews who are the best. If I was going that route, I'd brave the cold
> of the Mayo Clinic. But I'd first explore other options.
>
> Bob
I completely agree, as since the age of nine, I have developed several
different types of seizures, all without ever getting an aura of any sort
in my life.
I am 40 now and am under one of the best neuro's in the UK who
has never thought I ever needed surgery, and as far as I'm concerned, the
whole thing sounds a bit scary to me, so I do hope your son really thinks
this one over very carefully!
All the best
Sofie

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Dave Keays - 24 May 2006 07:02 GMT
>> As far as the best centers, go to US News and World Reports, which
>> reviews who are the best. If I was going that route, I'd brave the cold
[quoted text clipped - 10 lines]
> whole thing sounds a bit scary to me, so I do hope your son really thinks
> this one over very carefully!
But consider the potential consequences/side-effects of all options, not just of
surgery. I am one case where surgery worked best and the various toxic waste
(aka medicine) I was "given" had tremendous bad side-effects.
> All the best
>
> Sofie

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