Epilepsy surgery.

Alicia

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Hello, I have a 14 year old son, that has intractable epilepsy, and is going into the hospital in Jan, to see if he is a surgery canidate. Has anyone here had the procedure? Would you reccommend it? Any iformation would be greatly appreciated! Thank you so much. Alicia
 

Bernard

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There was a surgery performed live over the internet today! You can watch a replay of it here:

Replay of: A Temporal Lobe Resection

I haven't had the surgery although some of the members here have (but may not have seen your post). From what I've read, it has worked wonders for some people, worked for a few years for others before seizure activity resumed and not worked at all for others.
 

Elisa

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Alicia-
Hi, my name is Elisa and I did have the surgery on my right temporal lobe, 12 years ago. It was very new then, I was the first in my area to have it done. It didn't work for me, but it wasn't a painful or a bad experience. I would do it again in a minute, if there was a chance that I could be seizure free.
Please PM me if you have any questions.
Elisa
 

Bernard

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I wonder if these patients are getting a price break for consenting to have their surgeries broadcast live over the internet... There is going to be another surgery broadcast live over the internet. This one is being performed at Houston Memorial hospital - just miles away from where we live:

The surgery will be performed by Nitin Tandon, M.D., assistant professor of neurosurgery at the University of Texas Medical School at Houston.

...

Serving as moderator of the live Webcast will be Dennis Vollmer, M.D., chief of neurosurgery at Memorial Hermann and chairman of neurosurgery at The University of Texas Medical School at Houston.
Live Webcast of Resective Surgery for Refractory Epilepsy, A Highly Effective Surgical Treatment of Epilepsy from Memorial Hermann Texas Medical Center
 

Mandy

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No. I was just told yesterday by my neurologist that i'm a candidate for Temporal lobe surgery. I don't know if i'm going to go through with it though. He said there is a 70-75% chance i may never have seizures again,but it may effect the short term memory and that scares me!
 

brain

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From another viewpoint

Heck, I've had short term memory issues since
I was born this way, and I'm older than dirt!
(OK, that was an exaggeration there).

We have another member here, Nancy, who would
go through another brain surgery in a heartbeat;
she's had so many surgeries - and she's peachy,
and if we could get her to post in here and share
with you - she would BLOW YOUR MIND!

But the truth implies here: All surgeries - even a
dental extraction, comes with a risk. We have a
decision to make, and unfortunately - sometimes
those decisions in life; we have to make is worth
it all!

Let me put it this way and bluntly:

1) Seizures - you are putting yourself at risk for
SUDEP
or Brain Damage at any time; you just never know.
People / Children / Babies - have died and
have sustained such from this.

2) Seizures - they hinder life and your lifestyle;
impacting everything. AEDS are harsh
and there is really no 'safe' AEDS
on the market (although we wish there were), and
the goal is - to be seizure-free.


The Surgery may very well reduce your chances
of having to face SUDEP,
Brain Damage(s), and fortunately after a time span;
if all were successful, the AEDS
can be reduced or even dropped down to nothing
where you'll not have to ever touch them again.

Think about it - NO MORE SEIZURES!

Isn't that the purpose?

Or - if the surgery is to reduce and minimize the
seizures; consider it a tremendous blessing! Things
will be soon be back on a roll and back to normal,
and what was in the past would be in the past.

Would all of this be worth it all to you?

I would take the brain surgery in a heartbeat myself
once they declare me I'm a candidate again! I'm sick
and tired of these freaking seizures!
 
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Elaine H

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Hi Alicia

I thought I'd write to you regarding the surgery option as a cure for epilepsy. I first had brain surgery in Sept 2000 after 14 years of uncontrollable Complex Partial Seizures. I had a cavernoma removed from my right temporal lobe, I had been a forceps delivery at birth, and this is what caused my seizures, although they didn't start until I was 23yrs old. I was seizure free for five wonderful years, and epilepsy was a thing of the past for me. In July 2005, for some reason, my seizures started again, and they seem to have returned with a vengeance! I have the most terrifying auras, and then mainly complex partial seizures, although I did have a tonic clonic seizure a couple of weeks ago.

I am going into hospital again in London on June 25th, this time to have my right hippocampus removed, this is the part of the brain that looks after the laying down of short term memory, and emotions, and is in the Limbic System part of the brain. I would say that if we are given the option of surgery, we really should take it, I was in hospital with people who were told that there was nothing that could be done for them, and they were basically stuck with seizures for life, one guy in particular who had been badly smashed up in a car accident, he had a lot of physical injury aswell as being stuck with epilepsy, the poor guy is stuck with it. Imaging techniques are so incredible these days, and they really did spend a lot of time with me before the surgery, talking to me, and answering any questions and concerns I had, they have been very thorough, and I've even been able to e.mail my professor with the odd question, they are only to pleased to help, as obviously it is a big step to take. I so want to get driving again, and back to work, and generally get my life back again. It's a lot to think about, but if the option is there, it's definately worth considering it. Me being the joker, I asked the surgeon if he could put a zip in my head this time, just in case I have to go back again! He laughed I'm pleased to say.

I hope you get all the help and support you need on this website, it is full of great people, and we all have that something special in common. I've just finished a four year course with Leeds university on epilepsy care and management, I wanted to learn as much as I could about this oh so misunderstood condition, and please please if there's anything I can help you with, please feel free to ask?

Keep it all crossed for me next week? I am not really looking forward to it and I just want to get it over with. I hope to hear from you soon.

God Bless & Best Wishes

Elaine x
 

Loudmouth

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Elaine,

June 25 is my birthday,and my thought will be with you all day.:flowers:here's some flowers for you....i hope you will let us know how you get on,in july/august, I am having tests in Romford to see if I am a candidate for VNS surgery/other surgery.All my thoughts and best wishes for a speedy recovery are heading your way,Elaine.
 

Nancy

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I'll be praying for Elaine on Wed., June 25 with all my heart. Epilepsy surgery is no fun but it's worth all the trouble.

I had my first one (Barnes Jewish Hospital/Washington University - St. Louis, MO) Feb. 14. 2005 ..... I've said this all before :) I was given the choice to have more tissue (shudder) and the entire left hippocampus removed or the simple way .... and I picked the "simple" way.

I didn't had any seizures for several months but when they started again I headed right back to the hospital and had another surgery May., 2007 .... no seizures since then and now I'm down to only one MRI each 6 months instead of each 3 months.

I'm still taking the same meds for another year.

I will try to answer ANY question I can.
 

Elaine H

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Hi Loudmouth

Thanks so much for your kind words, I am so dreading this operation, but it is great to think you will all be thinking of me that day, I actually have it done on the 26th June, last time I had brain surgery I was out after about 4 or 5 days, and I remember going for a job interview about a week later with a great big bandage round my head, I just have to keep positive, I'm lucky to have a brilliant partner, and a great network of friends and family, although I know I'm so going to miss my mum while I'm in there, it's thanks to mum's insistence with my doctors that I got any surgery at all, I lost het just before Xmas, and this will be an extremely emotional time. My biggest terror, is waking up and not knowing or recognising people, I couldn't bear that, the surgeon said my memory wouldn't be any worse than it is now, and believe me, short term memory is pretty bad.

I hope you have got as much from this wonderful website as I have, isn't it great to get people's different perspectives on epilepsy from round the world, I'm very glad that I stumbled across it.

I'll keep you all posted on how it goes, and I so appreciate your kind words, it's good to know you're all there!

Thanks very much!

Cheers

Elaine x
 

Elaine H

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Hi Nancy

Thanks for your kind words, it's great to hear from people who have had the surgery, I had surgery to remove a Cavernoma from my right temporal lobe in Sept 2000, but I know the hippocampus is quite deep in the brain, I just hope and pray that it all works out, and my seizures stop for good! I am just about sick of them after 22 years, I was seizure free for five wonderful years after the first surgery, but it came back again, and that was one of the saddest days of my life!

It will be good to know that you are thinking of me, I go in on June 25th, and the surgery is June 26th, I will of course let you all know how I am doing, I think I was in about 4 or 5 days last time. I've had lots of little Simple Partial Seizures for the last few days, but I know that this is down to worrying about the op, I just can't stop thinking about it, I would love to wave a wand and open my eyes and be in Egypt, my favourite country of the whole world1 I'll be taking myself there in my mind while I'm in hospital I'm sure I will, I usually pretend I'm there when I'm stuck in an MRI scanner, I hate those things!

Anyway, thanks again for getting in touch, I so appreciate it, I'll keep in touch, and keep it all crossed for me on June 26th?! Thanks so much!

Best Wishes

Elaine x
 

josieb

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Elaine:

I don't post much but read everything on the site. I had a left temporal lobectomy in February of 2006, and it has been a long uphill battle with some recent improvement. Finally, after continuously trying different meds and dealing with some major side effects, I have now been seizure free since September 2007. I just wanted to send a quick note to wish you the best of luck & let you know that you will be in my thoughts and prayers.

Sincerely,
Josette
 

Elaine H

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Hi Mandy

Don't be scared, I have just had my right Hippocampus removed during a right Temporal Lobe Resection, and I have had no problems since, I have no trouble with my short term memory, that was what like you, I was worried about, but my surgeon assured me that there was no way my memory could get any worse than it was, as I had Sclerosis of my right temporal lobe, and it wasn't working anyway. It's been 10 days since surgery, and I really have been ok, my horrible scary auras seem to have left me which is the best news ever, I always said, I could deal with epilepsy if it didn't involve the auras, as they absolutely terrify me!!
If the surgeons in your area are as good as they are here in London, you will be in the best hands, they sure know what they are doing these guys, and I had everything discussed with me over and over again, before I actually had the operation, ask as many questions as you can, and you have a right and a left Hippocampus, both responsible for short term memory, so unless you had them both removed, you will be fine. I am so glad I had my op last week, I feel so much more relaxed and confident, and I now want to get out there and grab the world by the b---s!!! Go for it and the best of luck to you!! I was only given 50/50 chance of a complete cure, so your odds sound pretty amazing!

Best Wishes

Elaine x
 

RobinN

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Elaine - This is just plain AWESOME! I am so glad that you are doing well.
The fact that you just had surgery and are doing so well, it can only get better and better ... right?
 

montse

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Elaine,I am very happy to read that your operation was ok.
I know a girl and a man who had the temporal lobe resection done, and they are seizure free for 3 years, their life changed and they are working again, one of them as a doctor.
They are still taking some medication, but everything went right.
 

Cint

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Not all is good :((

from Sharon:
"Or - if the surgery is to reduce and minimize the
seizures; consider it a tremendous blessing! Things
will be soon be back on a roll and back to normal,
and what was in the past would be in the past."
I had a left temporal lobectomy back in 1990 and was seizure free for 14 months. But the seizures came back with vengeance! From CP's before surgery to CP's & TC's after surgery! And not only more seizures but also depression! And I still deal with bad bouts of depression to this day.
I couldn't have another brain surgery because they say the damaged area is deep in the left hippocampus and if they were to cut there I would end up like an Alzheimer's patient! So, unfortunately, my past isn't what most people want to hear. :(

I have since had the VNS surgery, and that has done me more good than the brain surgery, although it isn't a cure all.

Cindy
 
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montse

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Of course not all is good, there is a risk like in other operations.
One has to see the pros and contras and valuate the risk.
 

Mandy

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Hi Elaine! I'm glad everything is going well for you. I'm probably going to have the surgery. My dr said i'm out of opitions. I've taken 7 of the 12 drugs out there and nothing is working! He said my hippicampus is pretty much fried from having so many seizures. So the chances of any memory problems is non-exisitent. He said if i ever want to drive and have a normal life i should go through with it. Thanks for your imput! I greatly appreciate it! Good luck and Take care! Mandy
 

alivenwell

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Congratulations Elaine!!! It's great to hear from you again! I am so glad you made it through the surgery with successful results!
 
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