Considering brain surgery

jemsister

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Hey guys. I've been considering brain surgery lately. I previously considered it as just not the option for me, I just wasn't comfortable with the idea of them cutting around up there. But the more time goes by, the more I think maybe I ought to pursue it--at least from the standpoint of being tested to see if I am even eligible. I don't expect a miracle cure, but I would love for my seizures to be more controllable.

Can any of you tell me what I should expect? The only testing I've done have been EEGs (3 hour outpatient or shorter), and one MRI when I was first diagnosed. They have suggested I go in for the inpatient VEEG where they take you off your meds, but they haven't mentioned doing anything further. What kind of testing did you do prior to being deemed eligible? What can I expect from a 5-7 day VEEG?
 

qtowngirl

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Most clinics sleep deprive as many nights as possible, so bring lots of mags and books, and laptop too but keep in mind you can't touch it when it's plugged in so someone else will have to plug/unplug it for you to repower.
If you can take someone with you it helps the time go by so much better (most places have an extra cot etc.), and you may also need them to buy daily food as hospital food is usually bad. Nurses will constantly be around, checking your IV, checking on you, and seeing how you're feeling. A camera will be on you 24/7 and you'll only be taken off the eeg probes every four days or so for a shower. Fun!
I just came home from a 17-day stay and will never forget it. But I definately recommend it, it's the best way to find out what's really going on.
 

jemsister

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Wow, I didn't realize they did studies as long as that! Did they cut your meds when they did it? I hope it wasn't too miserable. =P I would really like to know what's going on in my brain, surgery or not. Somehow it seems like it would be comforting to have the information, even if it doesn't change anything.
 

qtowngirl

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Yeah I was surprised too, was originally planned for 10-14 days but I hadn't had enough seizures in 12 days and they were so sure if we just waited that much longer some would come, so asked me to stay a third week. I hesitated... work, kids, sanity... but my bf (who was by my side the whole time) talked me into it. And bang - three grand mals!
Bit the shit out of my tongue worse than ever before, they were pretty harsh, but the med team got more than what they needed so those bloody probes came off!!! And yep my meds were cut the second night I was in there.
The only complaints I'd have are the more-than-itchy head, frustration that it took so long, and a few absolutely useless nurses. Other than that not a big deal, watched lots of shows and read a few novels :)
 

Nakamova

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qtowngirl

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Ooh yes that was a great article, very helpful to me as I knew there was something to remove we just didn't have a definate location. The stay in the seizure unit cleared that up (another reason jemsis that I recommend it) - a lesion on the amygdala.
Yep like Nak said lots of steps to go through but it's been worth it.
 

CQ:)

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I had brain surgery in March last year, Nak has already posted a link to the thread I started a couple of weeks before my surgery.

There is a lot of testing involved to see if you are a candidate for surgery, I would say each country or each epitiologist would be different in what pre surgery tests they do on the patients. To even be eligible for surgery the specialists need to find where in your brain the seizures are coming from. My seizures were caused from scarring on my left front temporal lobe (most likely caused by tonic clonics I had as a baby) which showed up on my MRIs.

It was my local Neurologist who suggested that i think about surgery & he referred me to an epitiologist in the city. When I met the epitiologist he went through my complete history of epilepsy & said he felt I was a good candidate for surgery.

The pre surgery tests I had done was a PET scan, SPECT scan, MRI, Video EEG , Neuropysch evaluation & visual eye test. A couple of days before the surgery I had another MRI (which was more of a map of my brain to assist the neurosurgeons), saw the Neuropsych again & met one of the Neurosurgeons.
When I had my Video EEG I only had auras & no complex partial seizures so the epitiologist asked if I could have a functional MRI which not only gave them more information but also assisted them with their studies.

For me to be able to have the surgery there was a team of specialists (Epitiologists, Neurologists, Techs who did the MRIs, EEG, Neuropsych etc) who had a meeting to decide if I was able to have the surgery. I just needed one specialist to say no & I wouldn't have been able to have the surgery but they all agreed that I was a very good candidate.

I met the epitiologist in June 2010, started the pre surgery tests in September 2010, found out November 2010 that I could have the surgery & had the surgery in March 2011. I was lucky that it all went really quick & I didn't have to wait to long but it isn't always the case, some people may have to wait years before they can have surgery.
 
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Cint

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Ooh yes that was a great article, very helpful to me as I knew there was something to remove we just didn't have a definate location. The stay in the seizure unit cleared that up (another reason jemsis that I recommend it) - a lesion on the amygdala.
Yep like Nak said lots of steps to go through but it's been worth it.
And here is even more info that would have been valuable when I had my surgery. I had to have these tests done before my surgery.

http://www.epilepsy.com/epilepsy/surgery_wada
http://www.epilepsy.com/epilepsy/surgery_brainmap

Mine, tho, was on the left side and they couldn't get all the damaged hippocampus. If they would have gone deep into my brain and "cut it out", the neurosurgeon said I would end up like an advanced Alzheimer's patient. So, I had to deal with the consequences. Now I'm a refractory E patient.

http://www.epilepsy.com/epilepsy/temporal_lobectomy
 

jemsister

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Thank you guys for all the articles and info. Much appreciated! Sort of daunting to think about going this route. But I keep having the same issues over and over when they put me on something new. I'm sort of getting the feeling that there are no meds out there that will give me total seizure freedom. At my best, I was still having at least one seizure per month, but that didn't include the bad days of SP clusters I get at least two or three times a year. I'd love to be a little less volatile, if not completely cured (do I understand correctly that surgery does not usually completely cure a person, but more commonly makes seizures more controllable with meds?).
 

qtowngirl

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do I understand correctly that surgery does not usually completely cure a person, but more commonly makes seizures more controllable with meds?
That's correct. Surgery can have high success rates, but no guarantee.
It's hard to swallow but the simple fact is that Epilepsy has no cure. Lifelong, just due to the fact that regardless of the measures you take it can always rear it's head if it so desires. HUGS.
 

CQ:)

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What is a neuropsych evaluation, and why do they perform them?
A Neuropsych evaluation is a really important part of the pre surgery tests. The neuropsychologist assests your memory, how you cope with epilepsy & to make sure that you are ready for surgery both physically and mentally. If the neuropsychologist doesn't feel that you are ready for the surgery then that can impact on the specialists decision as to whether you can have the surgery.

When I had my Neuropsych evaluation I was in hospital for my Video EEG. The Neuropsych got my epilepsy history from both my Mum & me, asked me questions to find out how the epilepsy inpacts on my life & what I hoped to get from the surgery (all I wanted was for the surgery to reduce my auras, if I could go seizure free that was the bonus). My Mum was then asked to leave the room so the Neuropsych could do some memory/ concentration tests.

I had to have another memory test with my Neuropsych 3 months after the surgery to see if the surgery affected my memory. I thought my memory was crap but when I asked the neuropsych how I went she said I went well & my memory was in the normal range.

I think sometimes they might do a Wada test as well, I've never had a Wada test so don't know much about it but I see Cint has already posted a link about the Wada test.

I had 2 Neuropsycholgists & both were really nice - 1st was a male who did the 1st Neuropsych evaluation & that was the only time I had to see him.
The 2nd one who is my Neuropsychologist is female & I met her while in hospital for the Video EEG where she explained what was involved with surgery & her role. She did my 2nd memory test & I see her when I go to the hospitals epilepsy clinic for my follow up appts with the Neurologist. I keep in regular contact with my Neuropsych emailing her to give her updates on my progress. Also if I have any problems or questions I email her & she usually gets back to me as soon as she can.
 
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Cint

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I also had a neuropsych test before and after my surgery and again several years ago to see how bad my memory is. And the results were not impressive. :( My neurologist then sent me to a neurospychologist for more therapy to help with my memory. Sometimes they also do this test on patients who aren't having surgery, just to see where they are as far as memory, thinking skills and seizures.

http://www.epilepsy.com/epilepsy/specialists_neuropsychologists

qtowngirl said:
It's hard to swallow but the simple fact is that Epilepsy has no cure. Lifelong, just due to the fact that regardless of the measures you take it can always rear it's head if it so desires.
:agree: Living proof here that it can rear it's UGLY head any time it wants, regardless!! Make sure you think L-O-N-G and hard before you go down this road. There is NO turning back.
 

Cint

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I think sometimes they might do a Wada test as well, I've never had a Wada test so don't know much about it but I see Cint has already posted a link about the Wada test.
Yes, I had to have the WADA test done because they weren't sure exactly where the seizures originated, on my left or right side. The WADA is done basically to see where memory and speech is controlled in the individual's brain.

From: http://www.epilepsy.com/epilepsy/surgery_wada

The Wada test looks at language and memory on one side of the brain at a time. Language (speech) is controlled by one side of the brain (in most people, the left side), and the Wada will tell the doctors which side controls language in your brain. Memory can be controlled by both sides of the brain; the Wada tells which side of your brain has better memory. If the side that controls language or has better memory is where your seizures may be coming from, the surgeon may consider performing an fMRI or brain mapping before surgery.

Who performs the test?

Three doctors are usually involved in performing a Wada test: the neuroradiologist (who uses imaging devices and substances to study the brain), the epileptologist (a neurologist who specializes in epilepsy), and the neuropsychologist (who specializes in the relationship between the brain and how we think and behave).
 

jemsister

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Thanks, guys. I've been thinking of it for about the last 18 months or so, off and on. One of my reasons (and tell me if I'm crazy) is that I would like to be able to have one more child if I could, but with things the way they are, that just isn't looking good for me, being on four meds, and no guarantee that I will truly be able to actually kick two of them. That just seems like a big risk to me, especially with two of them being Dilantin (known for birth defects), and Vimpat (new and unstudied). What I would like to get out of surgery is just better seizure control with medication, and then maybe I *could* have more kids if we decided to. I'm only 32, I don't feel ready to say I am done having kids. And who knows, maybe I am done having kids, regardless of the path I choose.

I see the new neurologist on Thursday, and we'll see how that goes. I think that's when he wants to start weaning Trileptal and Dilantin (not sure of the order, but I imagine Trileptal because of the sodium issue). I will ask him what he thinks about all these things. He did outright tell me that he would try to talk me out of having more kids, but I think what he meant was because I was on 4 different meds, Dilantin being one of them.

I may schedule an appointment with my old neurologist to get her opinion as well. I trust her, but I'm not so sure about this new guy.
 

vagellie

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I to just had surgery, left temprol lobectamy and i dont regret it. U will natrually be in pain at first but doctors have gone so far today. I was alot better with in a week pain wise . They give u strong pain meds but i uses them as litte as i can because it ties me up. Eating plenty of fiber when on them helps and rest plays a giant part. As of tommorow it will be 3 weeks since the surgery yet still a long way to go on healing. Any decision u make were all behind you and we all wish u the best . If u need to know any details ask and i will help with the best of my knowlage .
 

CQ:)

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Jemsister -
Good luck with the Neurologist appt .
4 meds is alot to be on, is the new neurologist replacing the Trilepal & Dilantin with something else?
I was once on high doses of 3 meds (Tegretol, Keppra, Neurontin) which I hated because I was always so tired (that was mainly from the Neurontin) & like a walking zombie. I'd hate to think what it would be like to be on 4 meds.

When I was going through the pre surgery tests & spoke to the epitiologists they told me that if the surgery was a succes their goal was to gradually reduce my meds by getting me down to one med but a lower dose.
I had to wait until I was 12 months seizure free before they started reducing my meds. When I saw the Neurologist at the epilepsy clinic in March for my 12 month review he reduced the Tegretol, I was supposed to stay on that new level for 6 months. But when I went back to the epilepsy clinic I was under a real lot of stress so the Neurologist didn't want to mess with my meds so I am still on the same levels for now. I go back to the epilepsy clinic in March for the 2 year review & I am hoping I will be OK to have the Tegretol reduced again.

I haven't got children so I can't help you in regards to the meds affecting you having another child but I'm sure someone will give their imput on how the meds can affect your chances of having another baby.
 

CQ:)

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Make sure you think L-O-N-G and hard before you go down this road. There is NO turning back.
Surgery is a big decision & anyone thinking of having surgery should do as much research as they can. Before I had my surgery I did as much research as I could not only on the surgery but the epitiologist I was referred to, the hospital I was to have my surgery & the Neurosurgeon who did my surgery.
I also spoke to people who had the surgery (some had a good outcome, others didn't) who gave me a lot of input on what to expect.

I also go on an Australian epilepsy forum & spoke to a lady on the forum who had right temporal lobe surgery at the same hospital where I had my surgery. WhenI 1st started going through the pre surgery tests she was able to give me some great info on the hospital & the specialists I would see.

What I would like to get out of surgery is just better seizure control with medication
That is the same goal I had when I was doing my pre surgery testing, all I hoped was that it would help control my auras (which I had the most).

Surgery can have high success rates, but no guarantee. It's hard to swallow but the simple fact is that Epilepsy has no cure. Lifelong, just due to the fact that regardless of the measures you take it can always rear it's head if it so desires.
All the specialists at the hospital I had my surgery told me that they won't say the surgery is a cure but more as another treatment to help control the seizures because the meds alone didn't help control the seizures.

When I 1st had my surgery I set myself little goals on how long I hoped to be seizure free. 1st I wanted to get to 6 month seizure free (After my seizures returned in 2002 I had never gotten past 5 months seizure free), then I wanted to get to 12 months seizure free. Once I reached my 12 months seizure free goal in March I aimed to go 2 years seizure free, I am getting closer to the 2 year mark & haven't decided yet what my next goal will be or if I will even set another goal lol.

I don't regret having my surgery because it has really helped control my seizures but I also don't like to say that I will never have a seizure again because we never knows what might happen in the future.
 
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jemsister

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Epilepsy can thwack you at the most random and unexplainable moments. I don't think after 15 years of having seizures I would ever feel like I could say I was cured. You just never know when one is going to wham you. I have a few triggers, but it seems like more often than not they are just out of the blue.

With my two pregnancies, I was on Trileptal monotherapy. My son had a cleft in his soft palate, but was otherwise perfect. My daughter developed normally. The idea of being pregnant on 4 AEDs just scares me.

The doctor does not plan on replacing Tri and Di with anything else. A few months ago, I was on monotherapy Trileptal, but they planned on replacing it with Lamictal. The lamictal hasn't been enough thus far, though they could raise my dose a bit. They added Dilantin just so that they could reduce the Tri further because it was draining my sodium. So Di is really only there as a stopgap for now, and not part of the long term treatment plan. The new doctor thinks I should not be taking Di, so he's replacing it with Vimpat. So originally the plan was to remove Tri and have me (temporarily at any rate) on Lam and Di. But the new plan is to have me off both Tri and Di and keep me on Lam and Vim. Ugh. What an autumn it has been.

Thanks for answering all my questions, everyone!
 
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cher1985

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I myself haven't had surgery but they have found a scar on my brain left side and I have had the 5-day EEG, the information i got from the doctors office said that for 1-2 hours a day I could get "unplugged" and walk the hall ways with a nurse..... WRONG i had to stay in the room and the only walking around I got to do was to and from the bathroom and there needed to be someone with me at all times......... even in the bathroom. and lucky me no showering just washing hands and brushing teeth(I stunk so bad)..... pretty much all I did was read, watch t.v and sleep.

My E neruo doc wasn't happy that in those 5 days nothing happened, she tried to talk me into another 5 days I got to thinking about it so much that my sister thought I lost my mind(i didn't stay the extra 5). my poor lil sister with her bad back(she stuck it out).

before my said doc left the area she had put it in my chart that when another seizure happens I am to stay 10 days for the EEG.......... if I choose it again I'm not going in the week before a holiday.
 
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