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  #21  
Old 03-04-2013, 04:12 AM
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Originally Posted by toro View Post:
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?
Hi Toro,

Do the neurologists have any idea where in your brain the seizures are coming from?
In my opinion having surgery should be considered as a last resort, eg if you find you are having trouble controlling your seizures with meds or other methods (eg diet change). As it has been mentioned on here many times brain surgery is a really big step & after you have the surgery there is no turning back. If you are only having minor seizures (I assume you mean partial seizures) & you feel you are controlling your seizures ok then I don't see why you need to have surgery. In the end it is your decision to make & your neurologist is there to guide you.

My seizures were caused from scarring on my left temporal lobe & I had brain surgery 2 years ago. I don't regret having surgery because it has helped me control my seizures but it was a last resort for me as I tried 5 medications over 7 years, none of which helped control my seizures. I actually found as the years went by I started having more partial seizures, even when I was on 2 or 3 meds.

Good luck with the rest of your tests & your decision about surgery.
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Old 03-04-2013, 09:06 AM
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Originally Posted by toro View Post:
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?
If your seizures are only once a month and only minor (do you mean simple partial or complex partial seizures?), then why in the world would your doc say you need surgery in your left temporal lobe? As CQ & qtowngirl have pointed out, surgery should be considered as a last resort after trying more than two or three meds. My surgery was a last resort also and I was having 3-4 complex partial's a day. At that time I had tried 3 meds (not as many were available back in 1990), to no avail. So that is why I went for surgery. If I were having only minor seizures once a month, that would've been almost heaven to me. Just remember that once you have surgery, there is NO turning back. It may work, it may not work! For me, it did not. And if on the left side, there can be language problems plus memory issues that last forever. There are many more medications on the market one can try before going for surgery.
Good luck with your decision.
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  #23  
Old 03-04-2013, 09:44 AM
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One of my neuros suggested surgery to try to get rid of my numerous partial szs, even though they were not really interfering with my life to any great degree. I believe that the risks for me were far too great. If a med has a bad side-effect I can just try another one. If surgery screws something up, then it's forever and ever. No going back. After he suggested it two or three times, and I told him no each time, I switched to another neurologist.
there is just no way, in my opinion, that we know enough about the brain to safely go in and start cutting it up. The only way I would even consider suregery is if I had tonic clonics all the time and couldn't do anything else except convulse!

If our brains were simple enough that we could understand them, we would be too stupid to be able to understand them.
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Old 03-04-2013, 10:39 AM
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Originally Posted by arnie View Post:
The only way I would even consider suregery is if I had tonic clonics all the time and couldn't do anything else except convulse!

If our brains were simple enough that we could understand them, we would be too stupid to be able to understand them.
Before my surgery, meds did control my tonic clonic's, but did not control the complex partial's. After my lobectomy, the tonic clonic's came back as well. Something to consider.....
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Old 03-04-2013, 03:15 PM
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.... let's all point out here (as cq has), surgery should be seriously considered if you have scarring or a lesion. toro... do you know?
scarring or lesion or tumor won't take care of itself or disappear or...
over time meds just won't work for one that has these issues, as they are permanent in the brain. i hate my partials, and the t.c.'s have greatly picked up, but not nearly enough that i would consider brain surgery. but, i am, because i know the lesion, which takes up my amyg and hippo, will never go away, thus the seizures are only going to get worse. at 34 years old why take the chance. i may lose memory and ability to do a few things after surgery, but, that's already starting to go anyway from my head being so fucked up.
so... it really depends guys on what the cause of the seizures is. hopefully they can tell you without doubt toro.
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  #26  
Old 03-05-2013, 12:41 AM
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Hi. I too am somewhat surprised that they are talking surgery. Butttt, the neurologist I was seeing while I was in CA pushed me towards surgery as well. I didn't care for him so I asked for a referral to the UCSD Epilepsy center. They were great, very informative and not pushy. After more testing, med adjustments, etc my epileptologist said I should consider surgery.

As an accountant and computer programmer, I am just not willing to take the risk of losing any of that long term memory I've worked and paid so much to cram into my brain!

So after crying alot this is what I did...I'd been thru the long list of meds and keppra is at least keeping the tonic clonic's tolerable. I havent driven in years. I've been tracking everything for over 2 years...food I eat, sleep, hormones, moods, seizures (of course) in detail, daily activities, sex (im married and yes sex causes me seizures - argh). I put all this data into spreadsheets and graphs, found the correlations, and we can currently predict my seizures to near perfection. I also have a seizure dog, he helps!

We bought a house and moved to the same town as my folks. My husband actually left his job and CA to move out here. I have a close friend that helps with the errands/appts when my husband is at work. So between her, my parents and my husband I have a great support team that has learned more than they ever imagined about E.

I had to eliminate alot of foods and triggers from my life. I don't go out alot but when we do, including with family we do it during the off times and really enjoy the time together.

I've done alot of research and have received tons of feedback from the folks here at CWE. I also added many vitamins.

So having said all of that, it's just my 2 cents but I personally am not willing to put my brain into someone elses hands that easily.

I have alot of really shitty days but it makes me appreciate the good days even more!!!
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  #27  
Old 03-05-2013, 12:46 AM
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Originally Posted by arnie View Post:
... If surgery screws something up, then it's forever and ever. No going back. After he suggested it two or three times, and I told him no each time, I switched to another neurologist.
there is just no way, in my opinion, that we know enough about the brain to safely go in and start cutting it up. The only way I would even consider suregery is if I had tonic clonics all the time and couldn't do anything else except convulse!

If our brains were simple enough that we could understand them, we would be too stupid to be able to understand them.


Well said and pretty much how I feel.

Plus with my luck, I'd get the surgeon who's hungover that day and his wife just left him....you get my drift.
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Old 03-05-2013, 10:29 AM
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Originally Posted by qtowngirl View Post:
.... let's all point out here (as cq has), surgery should be seriously considered if you have scarring or a lesion. toro... do you know?
scarring or lesion or tumor won't take care of itself or disappear or...
over time meds just won't work for one that has these issues, as they are permanent in the brain.
Aren't seizures caused by some kind of scarring in the brain, either from lesions, brain injuries and seizure after seizure can leave scars. Why else would anyone even suggest brain surgery? What would they be looking to remove? I have scarring deep in my hippocampus that was causing my seizures. The first surgery, they could not get all of it and if they went in again to get the all of the scar tissue causing my seizures, I would end up like an end stage Alzheimer patient, unable to speak and not remember much of anything. No thanks. Enough is enough!

Here is more info on temporal lobe epilepsy:

Quote :
The temporal lobe epilepsy Syndrome

temporal lobe epilepsy is often undiagnosed as subjects often forget a simple but crucial injury to the head, even in childhood, such as falling down stairs, car wrecks, swimming injuries, or a host of other everyday bumps and jolts. The soft temporal lobes are vulnerable to injury any time they bump against the hard skull.

Dr. Daniel Amen says temporal lobe functions include auditory processes, ventral visual stream, auditory input, visual object recognition and classification, long term storage of sensory input. It links with the amygdala which adds the emotional tone to sensory input and memories. The hippocampus helps us navigate and determine where we are in space.

Primary functions of the dominant side (usually the left) include perception of words and processing of language relatd sounds, sequential analysis, increased blood flow during speech perception, processing details, intermediate and long term memory, auditory learning and retrieval of words, visual and auditory processing, and complex memories.

So instabilities or damage to the left lobe create problems such as emotional instability, decreased verbal memory, difficulty categorizing words or pictures, failing to understand words in context, internally and externally driven aggression, dark or violent thoughts, sensitivity to slights and mild paranoia, auditory processing problems, and reading difficulties.

Non-dominant side (usually the right) temporal functions include perception of melodies, pitch and rhythm, social cues, reading facial expressions, and vocal intonation, visual learning, and increased blood flow during tonal memory. Problems include recall of shapes, faces, and tunes; inept social skills, trouble reading social cues and context; decreased attention to visual input; trouble processing music and visual imagery.

Problems in either or both lobes create troubles with memories, fears, confusion, anxiety, abnormal sensory perceptions, visual and auditory hallucinations, spaciness or amnesia, déjà vu and jamais vu, unusual abdominal pain or headaches, religious or moral preoccupation, excessive writing, overemphasis on trivia, and of course seizures.

Dr. Amen sums up the symptomology with ten defining points: 1). Disturbance of auditory sensation and perception; 2). Disturbance of selective attention of auditory and visual input; 3). Disorders of visual perception; 4). Impaired organization and categorization of verbal material; 5). Disturbance of language comprehension; 6). Decreased long term memory; 7). Altered personality and affective development; . Altered sexual behavior; 9). Inability to perceive or remember events; 10). Damage to the inferior aspect of the temporal lobe – decreased memory in proportion to tissue damaged.
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  #29  
Old 03-05-2013, 02:29 PM
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Originally Posted by Cint View Post:
Aren't seizures caused by some kind of scarring in the brain, either from lesions, brain injuries and seizure after seizure can leave scars. Why else would anyone even suggest brain surgery?
The neurologists, epitiologists I've seen for my epilepsy all believe that the scarring in my brain was caused by all the Tonic Clonics I took when I was a baby/ toddler.

After I had the surgery I went to see my local neurologist so he could see how I was going. He told us that because of the scarring & my history of epilepsy he didn't think meds would help much to control the seizures but he still had to try me on meds to see how I went before he could even consider surgery as an option.

After I had all my pre surgery tests & the epitiologist came in to let me know what the panel of specialists decided he told me that they all felt the surgery was the best option for me. He also told me that because my seizures were becoming more regular they were concerned that eventually I could pass away from Sudden Unexplained Death in Epilepsy.
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  #30  
Old 03-05-2013, 03:03 PM
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Originally Posted by Cint View Post:
Aren't seizures caused by some kind of scarring in the brain, either from lesions, brain injuries and seizure after seizure can leave scars. Why else would anyone even suggest brain surgery? What would they be looking to remove?
ideally yes, however i have read numerous E and neurologist articles that talk about finding the focal point in the temporal lobe and removing that part for seizure relief. risky, tricky, hopeful, but if your epilepsy is taking your life away and constantly keeping you in danger, it's seriously considerable.
also, specialists talk about how they will never be able to give the DEFINATE answer... is scarring the cause of the seizures or do repetitive seizures cause the scarring?
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Old 03-05-2013, 09:41 PM
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I just had my neuropsych and video EEG completed. They put me on keppra (which I hate) along with tegretol XR, and lamictal. The results from my neuropsych test concluded that my memory may actually improve once I have the surgery. Since I had the stroke (which is what caused the scar tissue, causing my seizures) so young, the neuropsychologist said that it seems as though the right side of my brain has taken over my memory and removing the left hippocampus won't affect anything. They still want to do a Wada test and then make their decision, but hopefully everything turns out for the best. I myself don't have seizures that often either, however if I don't have the surgery now, the scar tissue in my brain could continue to expand, which is why they want to remove it.

Keep me posted on how things turn out. It's good to hear from others that are going through the same thing.
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Old 03-06-2013, 02:49 PM
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Originally Posted by Kmellen View Post:
I just had my neuropsych and video EEG completed. They put me on keppra (which I hate) along with tegretol XR, and lamictal.

Quote :
i'm on tegretol (carbamazepine) and lamictal (lamotrigine) too. they work okayyy together but sure didn't do the trick. added vimpat a couple months ago and my partials are sure doing better. trying to find the right combo ey. if you don't mind me saying tho, if you are uncomfortable going on a drug, or hate it, how come? my epileptologist asked about keppra way before lamot. or vimpat and i just said, 'after all i've heard i don't think so, let's move on.' fingers crossed it works for you (incl. not dealing with kepprage), but pls keep in mind if you are uncomfortable there's nothing wrong with trying something else
The results from my neuropsych test concluded that my memory may actually improve once I have the surgery. Since I had the stroke (which is what caused the scar tissue, causing my seizures) so young, the neuropsychologist said that it seems as though the right side of my brain has taken over my memory and removing the left hippocampus won't affect anything.

Quote :
mine said the same, when it comes to things taking over. my left hippo and amygdala have been affected for so long they're confident my right side has taken a lot of the tasks over already, and tho they can't mimic what the left does, they will atleast provide some support. gulp.
They still want to do a Wada test and then make their decision, but hopefully everything turns out for the best. I myself don't have seizures that often either, however if I don't have the surgery now, the scar tissue in my brain could continue to expand, which is why they want to remove it.

Quote :
yep, yep, yep. man we sound so similar EXCEPT the wada - big hugs on that one hun. i was so relieved when they said there was no need to do it. i hope that means they're SO confident in what they're doing that it's not necessary. gulp again.
Keep me posted on how things turn out. It's good to hear from others that are going through the same thing.
you keep us posted too. have they given you any idea of a date?
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Old 03-06-2013, 10:03 PM
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I originally was on keppra a couple years ago, hated it and switched to the tegretol XR. Now my neurologist put me on the tegretol XR and keppra even though I told him I hated the keppra so right now I'm weaning myself off the keppra and onto the lamictal. I take only the name brand of tegretol and it works a lot better with me than the carbamazepine did. I should know something after the bug meeting Friday, however they are saying I won't return to work until October 1st at the very least. Did you ever have a rash from the lamictal?
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Old 03-06-2013, 10:52 PM
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oh the rash!!! believe it or not (my pharm could not believe it, as he had told me the rash was about one in 10,000 people)... i got it the first day, after two doses. my eyelids were half swollen shut, lips were really pink, rash up the arms, on my belly, chest, and some on my face. my epileptologist said to go off for four days then try again. so i did and it happened again, tho not as bad. but b/c that was twice we cut my dose in half to 12.5mgs. went veryyyy slowly up from there and it was okay after that.
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Old 03-07-2013, 07:55 AM
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They are starting me on 25mg for a week, then 50 for a week, 75, then to 100. Hopefully I don't get the rash, but my neurologist did say that if I had a rash to call them so we will see how it goes.
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Old 03-07-2013, 10:03 AM
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ditto to all that. my doseages were the same (pretty sure it's prescribed the same for everyone as it does have that fatal side effect). and yep, call if you do cuz you'll need to get it out of your system for a bit. if so, suggest cutting it in half like i did, worked okay and the pill is the size of pinhead!!
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