temporal lobe surgery

Mandy

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Has anyone gone through Temporal lobe surgery? I just found out yesterday that i'm a candidate for it. Feedback is needed!:
 

Bernard

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Hi Mandy, there are several members here that have had the surgery. Have a look here for some older discussions:

brain surgery
 

brain

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I must add the video is exceptional
and very detailed. It does require
a Real Player - but they include that
free download at the site where you
can click on it to install it, if you do not
have it installed. I recommend it. This
one's far better than the other videos
out there as it's more detailed and
specific and generalized.
 

hawke86

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Hi Mandy,
I have had the surgery. It didn't turn out any good for me. You might want to think twice about it before you have it done. It was a mistake with me. I had to have a second surgery. The second surgery was I had the VNS put in. I have better seizure control with second surgery. I hope you make the right decision. Good Luck on your decision.
 

Mandy

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Hi hawke86,
Thanks for your feedback. I'm glad things worked out better for you with the 2nd surgery,and i hope things continue for the better. I really don't know what to do. There are so many things to take into consideration. My seizures used to be under control with medication, but now i seem to get them often. It wouldn't be so bad if i got an aura before they happen. But people need to tell me when i have them. I can't drive and i haven't worked in over 5 months. So i have alot to think about. Take care and good luck!
 

Elaine H

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Hi Mandy

In Sept 2000, I had scar tissue removed from my right temporal lobe, I was diagnosed in 1986 age 23, and it took a lot of my dear mum's time to get the doctors to consider me for surgery, it's thanks to her that I had it done. I was seizure free for five wonderful years, I didn't even have an aura, and I used to talk about it as though it was someone I used to know who had epilepsy, and not myself. I had the operation done in London, I met my brain surgeon a few times before the op, and he was very helpful and answered all my questions, he put me at ease the morning of the op, and he came into my room, sat on the bed and made it sound as if he was going to change a car tyre, not stick his hands in my head!
I hope I haven't put you off by saying that my epilepsy came back, I'm just waiting for a date to have my right Hippocampus removed, as I have sclerosis of it, and that explains why I have such a bad short term memory. Do you know what caused your epilepsy to start? I was a forceps delivery, and they caused scar tissue on my right temporal lobe. I had five brilliant years, and if this op gives me another five I would be happy, of course it was a complete nightmare when it came back again, I had no warning, I wasn't doing anything particularly stressful, I was at work, but I had taken and passed my driving test, got a great new job, and life was fantastic, all my friends and family said I was like a different person, I suppose I was, I don't go too far on my own at the moment, but I used to love jumping into my car, and going off for a drive, or to visit people.
I'm trying to stay positive with this second operation, I've been given a chance that a lot of people won't be given, one guy I was in hospital with was told he didn't have a focus, and so surgery wasn't an option, poor Steve is stuck with epilepsy after being badly smashed up in a car accident, so I do feel fortunate to be in this position.
On the light hearted side of things, I was more worried about my hair being messed up, they only shaved the part they were working on, so I did look a bit like a punk rocker for a few months! I always have to make light of things, that's just the way I am, always the joker, and I've asked the surgeon if he'll put a zip in this time, just in case I have to go back in another five years.
All the best to you Mandy, keep in touch and let us know what you decide, it would be great to hear from you. Take care.

Best Wishes

Elaine
 
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Mandy

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Hi Elaine H
Thanks for your feedback. I'm sorry they came back for you. I don't know what caused me to have the seizures. Its a mystery! I used to have them when i was a baby,they stopped at the age of 3. I went 12yrs without them and got it back when i was 15. I was playing lacrosse at the time when they came back. For the past 16 yrs normally i would take 3 different kinds of meds and they would be controlled for 5-6 yrs and then i got one and my Dr would switch my meds. But since the beginning of this year i've been having problems with them. My neurologist i had for 15yrs recommended me to another Dr to see if i was eligible for the surgery. I was admitted into the hospital for 1 week while My new Dr studied where they came from. After having like 50 seizures they saw where they came from and after having a MRI,EEG, and Pet-scan they decided i was a candidate. I don't know what I'm going to do. The memory part worries me and to be honest, I know its just hair,but i would miss my long hair! The dr said there is a 70-75 % chance i may never have seizures again. don't know what to do! I noticed that you live in england. I've been there 3 times for soccer. I visited many places while i was there. Very interesting! Well thanks for you imput. Take care and keep in touch! Mandy
 

Elaine H

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Hi Mandy
Good to hear back from you, you seem to be in the same dilemma I was when first told I could have surgery, I'm even a bit wary and scared waiting to have it done this second time, and I know what to expect. I hope I haven't put youoff the idea, they are pretty good odds for becoming seizure free 70-75%, my chances with this second op is only 50/50, but I've got to take that chance, I've had a couple of "wobblers" this morning already, and they really throw me out for the day, my partner is a fire fighter, and he will be working for the next couple of nights, so I'll be alone until Thursday morning when he comes home, I absolutely hate being on my own when I'm feeling like this.
Is there any particular time of day that you have seizures, are they triggered by anything in particular, does stress affect you? I've been thinking about my mum a lot these last few days, I lost her just before Xmas, and my stepdad has been and scattered her ashes up in Scotland this weekend, I just can't stop thinking about her, so I guess that hasn't helped, plus I probably had too much wine last night, but I do love my wine.
I noticed that you wished you had an aura before the seizure, God I have always said that I could deal with ahving epilepsy if it wasn't for the aura, they can be terrifying and I wouldn't wish them on my worst enemy, I've had a couple this morning, and I still don't feel right.
Anyway, keep in touch, I'm sure you'll be ok if you are in as good hands over there in the States as I was here in London, they really know what they are doing, and of course our hair will grow back eh? Keep in touch mate!

Cheers

Elaine x
 

rfrench

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surgery

Hi Mandy!

I had surgery 24 years ago I'm not sure if it was temporal or what the medical term is.All I know is I was one of the first to have the surgery and I recommend it strongly. I have been seizure free for 24 years. I had a couple while they took me off the medicine but it was my own fault I tried taking myself off all at once and that wasn't the proper procedure.The only side effects I've had are occasional migrane headaches but they are rare.
The surgery made it possible for me to get a drivers license and I take no meds for epilepsy.I do have a scar but the doctors said they could fix that but The insurance wouldn't pay for cosmetic surgery.
 

Cint

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Mandy,
Which side are you considering having surgery on? I had a left temporal lobectomy and was only seizure free for 14 months. I feel like Hawke, I wish I never had the surgery done in the first place. The seizures were worse for me after surgery. I have the VNS now which has improved my situation greatly.
Good Luck with your decision!
 

ashmstng

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Hey Mandy!
I just had surgery on May 22nd so I cant say what my future outcome will be. I had surgery on the left temporal lobe. I say talk it over with your doctor and really think about what you are doing. I really hope the best for you and Goodluck. Keep us posted on what you decide to do.
 

Nancy

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Hi Mandy - I had my first surgery (left temporal lobe) in Feb., 2006 to remove a tumor that started my epilepsy in 1990. More surgery in May 2007 and I haven't had a seizure since. I am a great fan of such surgery - honest :) !! It's made some remarkable changes in my life and it was worth everything.
Ask anything you want and I'll do my best to answer. I'll even show you a photo - lol lol lol
 

Elaine H

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Hi Guys

I'm due to have my right hippocampus removed on June 26th, this will be my second operation, the first one in Sept 2000 removed a Cavernoma from my right temporal lobe, caused by being a forceps delivery, I was seizure free for five wonderful years, then they decided to come back, after I'd sorted my life out, passed my driving test, and got a great new job! I can honestly say, that I would consider just about anything if it was going to give me achance to be rid of these damn seizure, Simple, Complex and sometimes Tonic Clonic, I can honestly say that the worst part of my epilepsy, is the terrifying auras that I have, I get the taste, the uneasy feeling, the Epigastric Rising, and that whole Deja vu or Jamais Vu feeling that I have tried for the last 22 years to describe to friends and family, anyone else been there? I could manage the epilepsy if it wasn't for the auras, they absolutley scare the holy doings out of me! If I'm alone and they happen, I usually try and make sure that I'm sat down somewhere safe, they don't always go into secondary generalised seizures, but to be on the safe side I don't go to far on my own anywhere.
I wondered if anyone else has had their Hippocampus removed? I know it is part of The Limbic System, and responsible for the laying down of short term memory, and emotions, I'm just terrified that I'll have even more trouble with my memory than I have now, if that's possible.
I'd love to hear back from anyone out there waiting to go into hospital, or anyone that's just come out, I know I'll be in good hands as it's The National Hospital For Neurology & Neurosurgery in London, so I'm sure they know what they are doing. Please keep everything crossed for me all you wonderful folks here in CWE, and I'll keep you posted as to how it goes on June 26th.

Loadsalove To You All

Elaine xx
 

Nancy

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Elaine - a tiny bit of my left hippocampus was removed during my first surgery, Feb., 2006 and all of it went with the second one May 3007.
They told me my memory would be seriously damaged but my right hippocampus would slowly help repair that in about one year. Whew -- they were correct about the memory damage -- but all sorts of garbage has slowed the repair. My memory is worse now than it was right after the surgery and my neuro says that Topamax isn't helping.
I started Topamax when it first came available and I did not notice any memory problems then. Who know now?

I will hold you and your surgery in my heart -- wishing you well - wishing you the best.
 

ashmstng

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Hey Elaine H and Nancy!:hello:
I know what it is like with memory problems I have had my seizures affect my memory all of my life. When I went to get all of the tests done to see if I can have the surgery, they said my memory will be the same after I get out of the surgery. I guess my memory isnt as bad as I thought. It could be so worse. I usually write things down on post-its to remind myself.

Elaine I really hope you the best on the surgery. I would do anything to get rid of the auras and seizures. I wanted to say I appreciate all of your messages and comments. You have a wonderful and kind-hearted woman. Keep it up. Dont ever change that. I will be praying for you and Goodluck. Keep me posted. ;)

Nancy I wanted to say you have been a really strong woman about these surgerys. I know I just had one and the pain I cant explain. I have never hurt so much in my life then the hospital had trouble finding a pill for me to take for the pain. So they decide to shoot valuim in my arm. Which all it did was knock me out and when I wake up I am in more pain when I wake up. I guess I hate headaches. I just wanted to say keep it up your a really strong-hearted and nice woman. :)

:wave:
 

Nancy

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Here's a fine thing to say ........
Elaine, you look so very pretty in your photo I think my next surgery should be face lift or something
 

Nancy

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ashmstng you said,
"I know I just had one and the pain I cant explain. I have never hurt so much in my life then the hospital had trouble finding a pill for me to take for the pain"
In a meeting with the surgeon (I had meetings with him for 6 months before surgery -- ALL his surgery is on adults with epilepsy) he told me that after surgery I would have pain I couldn't imagine - pain he couldnt' describe - but it had a purpose and it would end. He told me that AGAIN during our next meeting.
I have a super high pain threshold so I simply ignored him. And how could he cause pain like that cutting through a thin piece of head skin and muscle into nerve-less bone and brain? Sheez he was right. I HURT. OH, I HURT.

I still maintain that it was worth it and I was ready to do it again when it looked like I needed the second surgery. The chances of that tumor returning are very large. I hope I CAN have surgery again.
 

Mandy

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Hi Cint! I have my seizures on my left side. I went to Thomas Jefferson for a study last wednesday on memory in epileptics compared to non-epileptics. They will be able to tell me what side of the brain my memory is located. They said that they have found out in past studies that some people with seizures in their left temporal lobe maybe use their right side for memory. It will make my decision for surgery alot easier to make. I'm sorry to hear it didn't work for you. My dr is very confidant in getting it all in one surgery. But when i hear everyone else's experience, i get more worried. I use to be under control while taking 3 different meds. But now i seem to get them more often now. I haven't worked or driven in over 5 months. So i have alot to think about. Good luck with everything and keep in touch! Take care
 

Mandy

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Hi Elaine! Good luck with your surgery. I really hope everything works out for you. Take care and Keep in touch.
 

Nancy

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Mandy -- I have to BRAG about my experience :) What a great, positive experience!!

I had surgery on May 18, 2007 and I haven't had a seizure since then. (I did have a small aura soon after surgery that I reported to the surgeon as soon as possible but he said it was no problem) I feel like a walking miracle. NO SEIZURES!!

I would not hesitate or even slow down if this situation or one like it happened again.
I did learn from a physician friend that I was in a grade 4 university hospital with a truly great neurosurgeon and I should step ahead with no fear.

Another plus for me to brag about is that I had people all over North America praying for me :)
 
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