Temporal lobe epilepsy surgery / New Here!

[metallika_80]

Hi guys,

I am new to the forum and would need some help. I have been suffering from temporal lobe epilepsy for almost 16 years. I have tried many medications but no good results. my doctor has suggested that I go for the surgery. I had all the tests done. All went well except the WADA where it was found that found that most of memory resides on the left and i have left hippocampal sclerosis. The doctor has mentioned that mine's a good surgical case but do have chances of memory loss. So I have a few questions to ask before i take my decision.

Type of epilepsy (If Temporal lobe please mention left or right)
Brain side where most memory resides-
Age -
Date of Surgery (mm/yyyy) -
Success % (if specified by doctor) -
Frequency of seizures (before and after surgery) -
Medications(before and after surgery) -
Profession (before and after surgery) -
Please describe the problems that you faced or are facing after surgery (e.g. Memory Problems , depression, migraine etc) -
How long did you have to stay at the hospital -
Did have to go to any therapist after the surgery -
In how many days were you able to get to work -
Other experiences -
Any advice for me -

Responses are highly appreciated thanks

[KAM]

Are you male of female? It's an important question before I try to answer. I am a female and have been in the same exact scenario (I had brain surgery) and posed the same questions; I never had a forum like this where people are so genuine. I bet I can help you with my experience, but if not, the people on this forum are so good at letting you know what is fact and what is fiction. I will try and help!

[brain]

Metallika!

Welcome to CWE! I moved your
thread here, since it's your first
post and I wanted everyone to
welcome you and so that you'd
be seen by everyone and so that
your question(s) could be answered!

I was scheduled in 80s for surgery,
but HMO denied it stating I was too
young, and the same Surgeon tried
again in 90s, against a different
HMO - and they blamed it on the
1988 car accident (?) which had nothing
to do with it. He threw in the towel
and merely warned me he could only
see trouble in the future. That was 2
surgeries that could have been done
that could have possibility prevented
a lot of problems of where I am now
(today).

I've actually had 2 Wadas performed.

1989 - I was neither right nor left
side denominate - but I returned back
to my home State.

2006 - was half done, due to Nurse
administering Benadryl which kept
putting me to sleep, but it was
revealing I was right side denominate
and my seizures were right side and
I was supposed to have it redone
3 months, but it became postponed.

I needed surgery - however, they're
stating I can't have surgery, but the
others are stating I can.

~~~~~~~~~~~~~~~~~

Right now - I am back with my old
Neurologist (who is a level 4 caliber)
and I'm not sure which way he's going
to head.

[KAM]

Type of epilepsy Complex Partial w/ Grand Mal occasionally.

Brain side where most memory resides-Left Temporal Lobe

Age - 41
Date of Surgery - 10/09/98

Success % 99

Frequency of seizures (before and after surgery) - 1 Grand mal after surgery, 30 complex partials before surgery

Medications(before and after surgery) - 14 different meds look at KAM in the foyer an I mention a few of them.

Profession (before and after surgery) - Professional Sports Assistant Ticket Director and then Ticket Manager.

Please describe the problems that you faced or are facing after surgery (e.g. Memory Problems , depression, migraine etc) - MY MEMORY SUCKS!!!!

How long did you have to stay at the hospital - 3 days

Did have to go to any therapist after the surgery - no

In how many days were you able to get to work -I wanted to go after two weeks but the surgeon woudn't let me go My surgeon wouldn't let me go back for at least two weeks either.

Other experiences -
Any advice for me - If you are not a female, go for it. If you are a female, I have experience. Good luck, my prayers are with you.

[Bernard]

Hi metallika, welcome to the forum.

As you can see from the studies done on temporal lobectomies, the efficacy shrinks over time. As one doctor explained to me, most of the studies done only measured results for 6 months. It takes longer than that for the brain to fully heal though. You end up trading 'traumatic' scar tissue for 'surgical' scar tissue and sometimes the seizures can return after a couple of years.

Unless your current seizure activity is severe (or life threatening), I'd suggest exploring a couple alternatives like EEG neurofeedback or CBT. The brain has plasticity and can be trained to function more optimally ("rewired" in a figurative sense).

Good luck with whatever path you choose.

P.S. With a name like metallika, you should check out Speber's Auditorium.

[Nancy]

Hi --- I'm a 63 year old female and I developed temporal lobe epilepsy (left side) in 1990 because of a oligodendroglioma tumor that wasn't found until 2005.
I had first surgery to remove tumor and bit of left hippocampus from left temporal lobe, Feb 14 (wow! anniversary is a coming!) 2006. Seizures continued so I had another surgery May 18, 2007 and remainder of left hippocampus was also removed.

I have not had a seizure since the May 2006 surgery.
I've been on 95% of the anti-epileptic drugs available. Currently I'm on Topamax and Trileptal and I've been told that I will be on some for the rest of my life.

No profession to speak of .... proud of being a woodcarver.

Migraine arrived with seizures before diagnosis.

Depression is blamed on my life style not medication or epilepsy.

University hospital ran many, many tests including neuropsych testing.

First surgery meant 3 days, 2 nights in hospital. Second one was 4 days and 3 nights.

The surgeries were the best decisions I've ever made.

[Birdbomb]

Welcome metallika_80

No brain surgery, just want to welcome you to CWE

[metallika_80]

Thank you very much I highly appreciate. That's going to help me a lot. Thanks, again

[Stacy]

Hi Metallica,

I don't know if it will help or not, but I did a report on something called a "Gamma Knife" for my radiation class (graduate level). There are many people in the country who do it, but mostly it's used for breast cancer. The way this works is there are 21 points on your head that they mark and stick a huge collander on. Then as you lay down, you slide into an EEG type machine and the lazers hit these 21 points that were marked. Supposedly, it has an 80% success rate, and the 20% that are left, go in again and fix their problem. Check into it. It really beats "One Flew Over the CooCoo's Nest".

I'm glad you are researching all this. It's not prudent just to jump in because one person said so. Good Luck.

[patacake]

Type of epilepsy: Left Temporal Lobe

Brain side where most memory resides- Left

Age - 42 now

Date of Surgery (mm/yyyy) - 07-11-05

Success % (if specified by doctor) -70% to 90% that it will cure or at least help. For me I was seizure free for a year and slowly started again. Now it has still helped just not cured.

Frequency of seizures (before and after surgery) - Before 10-20 complex partial a week and who knows how many simple partial a week and a few tonic clonic a week 2 or 3 some times more. After surgery NONE for almost exactly 1 year and then it started with a few simple partial one month then went up to a few of those and a few complex partial along with them a month and then 2 years later suddenly went up to a huge weekend of non stop tonic clonic. So 2 1/2 years later I am still low with just a few of each a month but am slowly climbing back up.

Medications(before and after surgery) -exactly the same never changed since surgery. Topomax 200mg bid Tegretol 400mg bid

Profession (before and after surgery) - Child Day Care Provider before Tonic Clonics got to bad. Have not gotten back to working.

Please describe the problems that you faced or are facing after surgery (e.g. Memory Problems , depression, migraine etc) - Memory and speech were hurt bad but got a bit improved after a year, Only better to a point and stayed leveled off. I wont remember about something we did or talked about until you bring it up and then it will come back but words I can not come up with are nouns!
Migrains is my worse from it. I have a constant pain down the side of my face and if I am in sound or light it turns that pain into a migraine. However I had migraine problems before the surgery. They just have gotten 10 times worse and to be started by the light and sounds instead of just worse by those when it is there.

How long did you have to stay at the hospital - 6 nights why so long? my headache kept me until I told them I want out! They let me out I went home and my regular doc gave me a pain pill that workerd to get me better!

Did have to go to any therapist after the surgery - I did and still do but after the surgery I had a stroke and still am getting able to walk and talk

In how many days were you able to get to work -DNA

Other experiences - My stroke and my face pain had or have been my problems.

Any advice for me - Just get all information from the doctors