Doctor Suggested surgery, however memory loss possible

Kmellen

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The scar tissue, causing my seizures is in the left hippo campus of my brain, I've been told by both my Neurologists that having the surgery could cause memory loss, I could wake up and not know who my mother is, my sister, or my boyfriend of 3 years. So thinking about surgery and actually going through with the surgery are two different things. I am wondering if any of you who have had the operation, do you still have seizures, are you still on meds? What was the surgery like? Anything you can tell me I would greatly appreciate it.
 

Cint

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I had a left temporal lobectomy way back in the dark ages, 1990. I was seizure free for 14 months and then seizures returned. The neurosurgeon said the damage in my brain is deep in the hippocampus and if he were to go back and operate again, I could end up like an Alzheimer's patient, not remembering who I am or my kids, etc. So I decided not to go that route. At the time of the surgery, I was taking Dilantin and Tegretol. Since surgery, I've tried 10 more meds, to no avail, and now have the VNS. I would definitely go the VNS option before cutting into the brain. There is NO turning back with brain surgery. Once memory is gone due to surgery, it is gone forever....

I also had the brain mapping done and the WADA testing done before the actual lobectomy. Check this for more info:
http://www.epilepsy.com/epilepsy/surgery_brainmap
http://www.epilepsy.com/epilepsy/surgery_wada
 

CQ:)

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Hi Kmellon,

I had left temporal lobe surgery in March 2011 to remove scarring on my left temporal lobe.
So far I have been seizure free since surgery, I am due to go back to the epilepsy clinic at the hospital where I had my surgery at the end of March to see the neurologist & neuropsychologist for my 2 year post surgery follow up.

When my neurologist 1st suggested I think about surgery I was on 3 Anti Epilepsy Meds - Tegretol 400mg (twice day), Keppra 1500mg (twice day), Neurontin 400mg (3 times day). I saw an epitiologist in June 2010 & had the pre surgery testing done September 2010 & November 2010. While I was in for my Video EEG in Nov 2010 the epitiologist reduced my meds, he took me of Neurontin (at my request) & reduced the Keppra to 1000mg (twice day).

In March 2012 I had my Tegretol reduced from 400mg (AM/PM) to 200mg (AM/PM).
I am currently on Tegretol 200mg (AM/PM) & Keppra 1000mg (AM/PM). I will most likely be on anti epilepsy meds for the rest of my life but we are aiming to eventually get me on 1 Anti Epilepsy Med but at a lower dose.

This is a thread I started just before my surgery & have used to update on my progress since surgery - http://www.coping-with-epilepsy.com/forums/f41/almost-time-11741/
 
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pita300

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Ok you've had 2 left temporal lobectomy now here from a right temporal lobectomy.

I had surgery years ago to remove scar tissue. Not long after surgery my seizures came back and were worse then before I had the surgery. The good news was the doctors found a combination of meds that controlled my seizures and I went 15 years without a seizure untill March of last year. I was driving a car and living my life normally again. And I'll be truthful with you I had kinda forgot about that time in my life. Seizures are now back again. This time on the activity is on the left. I was told of the activity on the left before I had surgery but the doctors thought with surgery and medication I might beable to live and semi normal life. And I did for quite some time. I've just started on Keppra working my way up to 3000mg a day. I'm already on Tegretol and have been for a long time. I have never regretted getting surgery. I do believe it was the best decision I had ever made. I don't even want to think about where I would be if I had'nt had the surgery. I am hoping that the Keppra will take care of this setback i'm on now. I would definatly read CQ's post. Its worth the time.
 

Kmellen

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Thank you all for your replies. As if right now I am taking tegretol XR 800mg twice a day, they recently upped my dosage after I was in my second seizure related car accident. Luckily the only injuries were a little whiplash and I have quit driving since I do t want a third accident and I have also taken a leave of absence to figure things out. The one thing I am worried about is losing my memory. Especially since the damage is in me left temporal lobe in my hippocampus. I have only ever been on two different medications, keppra and tegretol, but because I have had seizures since I was 4 they want to do the surgery. I will be heading home from FL to NH where my neurologist is at DHMC which is where I have gone since I was a baby. The doctors there I trust, I am just wondering how long I will be back in NH for, from initial appts, to testing, to pre op and post op. any information helps!
 

CQ:)

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I have only ever been on two different medications, keppra and tegretol, but because I have had seizures since I was 4 they want to do the surgery.
You are lucky to only have been on 2 Anti Epilepsy Meds in all that time.
Usually a person with epilepsy has to try at less 2 Anti Epilepsy Meds with no success (didn't control seizures) before they can be cosidered for surgery.

My Neurologist tried me on 5 Anti Epilepsy Meds Tegretol, Lamictal, Topamax, Keppra, Neurontin. None of the meds helped control my partial seizures & when my neuro put me on Neurontin (the 5th med) he said there wasn't much more he could do & that was when we talked about surgery.
 

qtowngirl

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Hi kmellen,
CQ is right about the meds; minimum two drugs, but depending on your neuro, a lot of the times requirement is three that don't work. I'm a bit surprised they won't try a third, as there is many more out there. I've done tegretol, topamax, lamotrigine, and vimpat.
Right now am on all except topamax.
As for surgery, yes very hard decision. I'll be going in a few months for a left amygdalo-hippocampectomy, they need to remove the amyg and part of my hippcampus as there is a lesion. I've been warned about verbal memory loss but they've said considering how bad my seizures are (going on 19 years now) it's worth it, and gave me an 80% success rate. Was told surgery would be about four hours, in hospital for five days, then a post-op recovery of a good three months, no driving for six. The main thing they've stressed on was before AND after surgery I am to have as little stress in my life is possible. Go figure.
Best of luck with whatever decision you make :)
 

Kmellen

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Was just told to come in on Feb 4th for a video EEG. Going in for 5 days. Has anyone ever had this done before?
 

qtowngirl

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Yep was in for 16 days a few months ago, from Oct. 15 to Nov. 1. Was off meds most of that time, started going down on day 2 and was off all by day 4.
You will have many wires attached to your head so you can't go very far, usually it's long enough just to go to the bathroom and back. Some people I've read were aloud to leave their room the odd time, I was not. Can get really boring so hopefully you have someone who will stay with you, or at least come to visit every day. Take books, deck of cards, anything to keep you awake, because you will be asked to pull all-nighters and that sure as hell ain't easy. Best of luck and hope they find what they're looking for!!
 

Kmellen

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Thank you qtown, I am a night owl to begin with so staying up isn't an issue, just not having netflix wont help lol. How long after your video EEG did you have surgery? Or are you scheduled for surgery?
 

qtowngirl

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Waiting for the call this week to schedule the date....

Let me just say tho it's not the same staying up all night when you're stuck in a bed rather than walking around your house doing whatever. :twocents:
 

Kmellen

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Very true! I have had so many sleep deprived EEG's and it figures the night I have to stay awake is the one night I want to sleep.

Good luck with your surgery! I hope all goes well!
 

qtowngirl

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Are they taking you off your meds, did they say? Sometimes when you're not in for long they don't bother.
 

Kmellen

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I will be in for 5 days, they didn't say whether it not I would be off my meds, but if they want me to have a seizure taking me off my meds is their best bet! :)
 

qtowngirl

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For sure. I have found in brand new atmospheres my partials seem to F off for awhile, likely b/c my brain is so busy absorbing all the stuff it's not used to that it's not idle (familiarity is one of my main seizure causes). So it took days - I only had two partials period and it took 13 days for a grand mal (and then boy look out!!).
Hopefully your brain obeys a bit better and you're in and out.
 

CQ:)

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I had my video EEG in Nov 2010 which was part of my pre surgery tests. I was in the hospital for 5 days, was put in Monday morning & able to come out on the Saturday morning.

When I went in for the Video EEG I was on 3 Anti Epilepsy Meds Tegretol 400mg (AM/PM), Keppra 1500 (AM/PM) & Neurontin 400mg (AM/NOON/PM). I mainly had partial seizures so the epitiologist/neurologist slowly lowered my meds as they wanted to try bring on a complex partial & not a Tonic Clonic.
I hated being on the Neurontin & the crappy side effects I had from it so I was taken of it cold turkey on the Monday. I also had my Keppra lowered on the Monday & on the Wednesday I had the Tegretol lowered (can't remember if I also had the Keppra lowered more on the Wednesday).

When I finished the VIdeo EEG & was put back on my meds the epitiologist changed my meds, he kept me of the Neurontin, lowered the Keppra to 1000mg (AM/PM) but kept the Tegretol at the same.

My Mum was with me, we took plenty of things to keep us occupied & hired the TV in my room for the week. I had different people (epitiologist/neuorlogist/neuropsych/students) coming in each day to see me so the days were quite busy. The nights went dragged a bit because I was sleep depriving myself. I never ended up having any complex partials & only had a couple of simple partials (auras). I found out on the Friday afternoon that I was a candidate for the surgery & it would probably be as early as March 2011.
 
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qtowngirl

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oh yeah that's right cq, forgot to mention that too... the day of testing with the neuropsychologist (they're looking for your strengths and weakness mentally and also intelligence). It was okay, mine went a bloody 8 hours tho. And also you may possibly have a visit from a neuropsychiatrist - great if you do b/c they can offer a lot of answers.
 

Kmellen

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What I'm curious about is that a lot of you seem to be on multiple meds where I am taking only one, which is tegretol XR. I take 800mg am/pm, but nothing else and the only time I tend to have a seizure is when I miss a dose or am under a lot of stress.
 

qtowngirl

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Yeah that's what we were mentioning before, it is a minimum two drugs before you're considered refractory or intractable (meds aren't the answer), and depending on the neuro, sometimes three. Mine was three. If you've only ever been on one and it works unless you miss a dose or stress (a top seizure cause), in anyone else's case I wouldn't understand why they would even be mentioning surgery.
However, at the end of the day scar tissue is considered a lesion and those they prefer to remove, and the sooner the better. If one waits then there's a risk of complications later in life, and sometimes to the point where it's inoperable. That's the main thing that made my decision for me, I'm only 34, I don't want to leave it, my mental state will deteriorate, and I DO NOT want to be in my 50's devastated that I chanced it.
Everyone however has to do what's right for them; msg me if you want to talk more.
 

toro

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Yeah...

Just came back from a five day EEG that triggered a few seizures. I have an MRI, PET, and neuropsych test this week. I'm now on lamictal and keppra. My doc thinks I may need surgery in my left temporal lobe.

I've already noticed better language skills now that I'm off Dilantin. The idea of surgery scares me blind though. I only have minor seizures once a month, so unless it is a tumor or something that can get worse, I just can't imagine. Opinions?
 
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