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Medical Forum / Diseases and Disorders / Epilepsy / January 2005

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brain surgery

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turbinado - 22 Jul 2004 05:02 GMT
I just had a consultation with an epileptologist for the first time, and he
told me I could be a candidate for brain surgery for my temporal lobe
epilepsy. (In the meantime he has added Clobazam to my Tegretol CR.) I would
never have considered the possibility before, but it seems that it's not as
big a deal as it used to be. Of course they still need to do months of
testing and evaluation, including a 14-day hospital stay for a 24/7 EEG.
Has anyone here had surgery for TLE? What were the results? Is it worth the
risk?
Liz & Allan MacDonald - 22 Jul 2004 12:32 GMT
> I just had a consultation with an epileptologist for the first time, and he
> told me I could be a candidate for brain surgery for my temporal lobe
[quoted text clipped - 4 lines]
> Has anyone here had surgery for TLE? What were the results? Is it worth the
> risk?

For me it was well worth it. I have just passed the five-year
anniversary of my temporal lobe surgery and I remain seizure free.  I do
still take 200mg dilantin daily.
Remember that having the testing does not commit you to having the
surgery.  You and your doctors make that decision once you have all the
information, not before.
FWIW, it took only 3 days of the video EEG for them to record all the
seizures they needed.
Feel free to email.
Liz
Mike - 23 Jul 2004 07:00 GMT
Hi, it's about 4 years since my surgery and so far so good.  Good to hear
Liz is doing well too.  I'm still on Tegretol 200mg twice a day, the doctor
says I can try going off of it if I want but I'm ridding my motorcycle to
work everyday and have pretty much gotten the rest of my life back so I
don't want to mess with anything right now.  There are side affects
depending on which lobe they take, I had my right side done.  If you're
looking at having the same side done write me and I'll tell you everything I
can remember.
Mike

> I just had a consultation with an epileptologist for the first time, and he
> told me I could be a candidate for brain surgery for my temporal lobe
[quoted text clipped - 4 lines]
> Has anyone here had surgery for TLE? What were the results? Is it worth the
> risk?
Liz & Allan MacDonald - 23 Jul 2004 14:06 GMT
> Hi, it's about 4 years since my surgery and so far so good.  Good to hear
> Liz is doing well too.  I'm still on Tegretol 200mg twice a day, the doctor
[quoted text clipped - 5 lines]
> can remember.
> Mike

Thanks Mike!  Glad to hear about you too.  I still marvel when I get
into the car.  The surgery gave me my life back.
Liz
Chris - 28 Jul 2004 01:23 GMT
To me it was. I had epilepsy since 8 months old. I had the Right
Hippocampus remeoved in 1999 and have averaged a seiuzre a yr since,
instead of a seizure a day. I had mine done in the San Fransisco Bay
Area, and was very happy with the docotr and results.
I would be happy to talk if you like

Chris

> I just had a consultation with an epileptologist for the first time, and he
> told me I could be a candidate for brain surgery for my temporal lobe
[quoted text clipped - 4 lines]
> Has anyone here had surgery for TLE? What were the results? Is it worth the
> risk?
b_wes - 10 Aug 2004 19:59 GMT
> To me it was. I had epilepsy since 8 months old. I had the Right
> Hippocampus remeoved in 1999 and have averaged a seiuzre a yr since,
[quoted text clipped - 7 lines]
> > Has anyone here had surgery for TLE? What were the results? Is it worth the
> > risk?

I had my right amygdala, hippocampus and part of my right temporal lobe
removed this past Feb (6 months ago); about 3/4 of a "twinkie" total.
The new? me now smokes, drinks, and is left-handed rather than right. My
short term memory is vastly improved; as well as my sense of rhythm and
balance... unless I have too much to smoke or drink.
Btw, the scar is invisible, _NO_ I haven't had any more szs, and if I
did I wouldn't tell anyone.
Satch - 10 Aug 2004 20:19 GMT
>> To me it was. I had epilepsy since 8 months old. I had the Right
>> Hippocampus remeoved in 1999 and have averaged a seiuzre a yr since,
[quoted text clipped - 15 lines]
> Btw, the scar is invisible, _NO_ I haven't had any more szs, and if I
> did I wouldn't tell anyone.

That sounds like the neuro surgeon did a great job then, didn't he?

Signature

Take care.

Marco

Chris - 18 Aug 2004 01:15 GMT
> >> To me it was. I had epilepsy since 8 months old. I had the Right
> >> Hippocampus remeoved in 1999 and have averaged a seiuzre a yr since,
[quoted text clipped - 17 lines]
>
> That sounds like the neuro surgeon did a great job then, didn't he?

Guy was a Comedain. After the nurse explain why the surgery might not
go on that day. The doc came in with a huge plastic mug and his hand
shaking. I figured it was his coffee fix. I know it would be mine. LOL
But he was just having he morning dose of H2O. :}}}
Chris - 18 Aug 2004 01:15 GMT
> >> To me it was. I had epilepsy since 8 months old. I had the Right
> >> Hippocampus remeoved in 1999 and have averaged a seiuzre a yr since,
[quoted text clipped - 17 lines]
>
> That sounds like the neuro surgeon did a great job then, didn't he?

Guy was a Comedain. After the nurse explain why the surgery might not
go on that day. The doc came in with a huge plastic mug and his hand
shaking. I figured it was his coffee fix. I know it would be mine. LOL
But he was just having he morning dose of H2O. :}}}
Chris - 18 Aug 2004 01:15 GMT
> >> To me it was. I had epilepsy since 8 months old. I had the Right
> >> Hippocampus remeoved in 1999 and have averaged a seiuzre a yr since,
[quoted text clipped - 17 lines]
>
> That sounds like the neuro surgeon did a great job then, didn't he?

Guy was a Comedain. After the nurse explain why the surgery might not
go on that day. The doc came in with a huge plastic mug and his hand
shaking. I figured it was his coffee fix. I know it would be mine. LOL
But he was just having he morning dose of H2O. :}}}
Chris - 18 Aug 2004 01:15 GMT
> >> To me it was. I had epilepsy since 8 months old. I had the Right
> >> Hippocampus remeoved in 1999 and have averaged a seiuzre a yr since,
[quoted text clipped - 17 lines]
>
> That sounds like the neuro surgeon did a great job then, didn't he?

Guy was a Comedain. After the nurse explain why the surgery might not
go on that day. The doc came in with a huge plastic mug and his hand
shaking. I figured it was his coffee fix. I know it would be mine. LOL
But he was just having he morning dose of H2O. :}}}
Chris - 18 Aug 2004 01:15 GMT
> >> To me it was. I had epilepsy since 8 months old. I had the Right
> >> Hippocampus remeoved in 1999 and have averaged a seiuzre a yr since,
[quoted text clipped - 17 lines]
>
> That sounds like the neuro surgeon did a great job then, didn't he?

Guy was a Comedain. After the nurse explain why the surgery might not
go on that day. The doc came in with a huge plastic mug and his hand
shaking. I figured it was his coffee fix. I know it would be mine. LOL
But he was just having he morning dose of H2O. :}}}
Chris - 18 Aug 2004 01:15 GMT
> >> To me it was. I had epilepsy since 8 months old. I had the Right
> >> Hippocampus remeoved in 1999 and have averaged a seiuzre a yr since,
[quoted text clipped - 17 lines]
>
> That sounds like the neuro surgeon did a great job then, didn't he?

Guy was a Comedain. After the nurse explain why the surgery might not
go on that day. The doc came in with a huge plastic mug and his hand
shaking. I figured it was his coffee fix. I know it would be mine. LOL
But he was just having he morning dose of H2O. :}}}
turbinado - 12 Aug 2004 02:13 GMT
> I had my right amygdala, hippocampus and part of my right temporal lobe
> removed this past Feb (6 months ago); about 3/4 of a "twinkie" total.
[quoted text clipped - 3 lines]
> Btw, the scar is invisible, _NO_ I haven't had any more szs, and if I
> did I wouldn't tell anyone.

Are you still taking epilepsy medication? That's very interesting that you
now smoke and drink - I presume you did neither before the surgery?
bwes - 13 Aug 2004 20:27 GMT
> > I had my right amygdala, hippocampus and part of my right temporal lobe
> > removed this past Feb (6 months ago); about 3/4 of a "twinkie" total.
[quoted text clipped - 6 lines]
> Are you still taking epilepsy medication? That's very interesting that you
> now smoke and drink - I presume you did neither before the surgery?

After discussion with my long-time(10 years+) PCP (primary care provider
& now trusted friend) about the side effects of the post-op drugs
prescribed by the neuro I was suppose to take for a year post-op to
prevent elepto-genesis (new szs); tri-leptal, then switched to dilantin,
I decided to discontinue them completely. Yes, I have been sz free. No,
I didn't drink before, except for anniversery & New Year's. Now I go out
several times a week. No, I don't go on benders or drive impaired. Pre-
op, when something in a social setting was passed to me for a smoke, I
always thanked them but declined. The running joke that always got a
laugh with the stoners, was when I declined, I said; "No thanks, I'm
already on drugs." (Meaning my anti-sz meds.) I no longer decline.
(There is much joy along the way.) Oh, did you mean tobacco? Yes, I also
have a couple packs of that "American Spirit" brand lying around. I
think I picked that up because of all the time I spend in bars. (Yes,
it's really tobacco, with mint and orange, and other fruity stuff mixed
in.)
RENEE2A - 12 Aug 2004 23:04 GMT
I HAD MY LEFT TEMPORAL REMOVED 5 MOUNTHS AGO AND HAVEN'T HAD A SEIZURE SINCE!
RENEE
turbinado - 13 Aug 2004 03:12 GMT
Are you now recovered from the surgery? How long did it take? Are you still
taking meds?

> I HAD MY LEFT TEMPORAL REMOVED 5 MOUNTHS AGO AND HAVEN'T HAD A SEIZURE SINCE!
> RENEE
Cookie - 23 Jan 2005 05:06 GMT
> I HAD MY LEFT TEMPORAL REMOVED 5 MOUNTHS AGO AND HAVEN'T HAD A SEIZURE SINCE!
> RENEE

Hi Renee, Are you still doing well? Any siezures? Side effects. Had a
3-D MRI in Super Size new model machine today in Phoenix. Doc says if
they locate the lesion, ( last located in 1998, bu chickened out of
surgery ) the surgery will have a 90% chance of success.. according to
Dr. Im 58

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