Do I really need surgery or should I put up with meds?

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epileric

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How well a drug works or doesn't work can imply very different things about what is happening in your brain.

It's your choice to do what you want but by exaggerating such things (even just how bad your seizures are) you have increased the probability of having a bad outcome.
 
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How well a drug works or doesn't work can imply very different things about what is happening in your brain.
And what does it imply? where have you heard this? Can you please support your claim that what drugs work and what drugs do not work relates to where in your brain produces too much electrical activity? I do not think you have any idea what you are talking about. No offense.

Did you try every single anti convulsant on the market before you had your surgery? because according to your theory, doctors should first exhaust every single drug to learn how they effect the brain to get a better idea of how to go about the surgery because it provides more information on how your brain works?
 

epileric

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And what does it imply? where have you heard this? Can you please support your claim that what drugs work and what drugs do not work relates to where in your brain produces too much electrical activity? I do not think you have any idea what you are talking about. No offense.
Actually, it just makes sense (to me at least). Specific drugs effect the brain different ways. How one reacts to them can say a lot about what the damage is.

Did you try every single anti convulsant on the market before you had your surgery? because according to your theory, doctors should first exhaust every single drug to learn how they effect the brain to get a better idea of how to go about the surgery because it provides more information on how your brain works?
Yes I have tried every anti-convulsant on the market but I have not had an operation.
 
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Actually, it just makes sense (to me at least). Specific drugs effect the brain different ways. How one reacts to them can say a lot about what the damage is.



Yes I have tried every anti-convulsant on the market but I have not had an operation.
Thats a lot of meds! You have not checked out surgery? It might be good?!

Anyways, I think I am going to ask my epileptologist what the meds I have been on say about me... she knows that lamictal has been the most successful drug so far so that should give are a lot to go by.

Thanks,
 

CQ:)

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Nick

In a way I feel that you might be a bit like the boy who cried wolf. If you continue to lie eventually it might all just come back to bite you in the backside. You have said that you have lied to your epitiologists to get your foot in the door to have surgery & I have also noticed that in this thread your story keeps changing.

By the sounds of it you have only had some of the pre surgery tests & in the end even if you continue to not tell your epietiologist the truth it will be the results from ALL the tests that will decide if you are really able to have the surgery.

You said that you've already had a Video EEG, did you have any seizures other then auras during your Video EEG monitoring?

When I had my Video EEG the epitiologists wanted to try to bring on a complex partial seizure which is one of the main seizures I take. By doing that they reduced my medications to a very low doseage & as over tiredness is one of my main triggers I sleep deprived myself (only sleeping approx 2 hours a night) to try to bring on a seizure. But in the end I didn't have any complex partial seizures & only had a couple of auras. I ended up having a complex partial in front of my Mum the day after I was let out of hospital lol.
Even though I did only have a couple of auras during the Video EEG the panel of specialists had collected enough information to decide I was a candidate & I didn't have to lie at all to be given the opportunity to have the surgery.

Yes some people (eg Cin) on here have had unsuccessful brain surgery & are probably a little pissed of that they are still having seizures but these people don't come on this forum to make people feel sorry for them, they are here to share their stories & help out where they can.

I don't think anyone here is trying to make you feel bad about having the surgery or scare you. We just want to make sure that you do understand what is involved in the surgery.
 
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Nick

In a way I feel that you might be a bit like the boy who cried wolf. If you continue to lie eventually it might all just come back to bite you in the backside. You have said that you have lied to your epitiologists to get your foot in the door & I have also noticed that in this forum your story keeps changing.

By the sounds of it you have only had some of the pre surgery tests & in the end even if you continue to not tell your epietiologist the truth it will be the results from ALL the test that will decide if you are really able to have the surgery.

You said that you've already had a Video EEG, did you have any seizures other then auras during your Video EEG monitoring?

When I had my Video EEG the epitiologists wanted to try to bring on a complex partial seizure which is one of the main seizures I take. By doing that they reduced my medications to a very low doseage & as over tiredness is one of my main triggers I sleep deprived myself (only sleeping approx 2 hours a night) to try to bring on a seizure. Butt in the end I didn't have any complex partial seizures & only had a couple of auras. I ended up having a complex partial in front of my Mum the day after I was let out of hospital lol.
Even though I did only have a couple of auras during the Video EEG the panel of specialists had enough information to decide I was a candidate & I didn't have to lie at all to be given the opportunity to have the surgery.

Yes some people (eg Cin) on here have had unsuccessful brain surgery & are probably a little pissed of that they are still having seizures but these people don't come on this forum to make people feel sorry for them, they are here to share their stories & help out where they can.

I don't think anyone here is trying to make you feel bad about having the surgery or scare you. We just want to make sure that you do understand what is involved in the surgery.
I have not lied on this forum! I am trying to be as raw as possible! spill everything to get critical responses and it has worked so far!

I was a little more fortunate during my VEEG. They took down my lamictal dosage and did some sleep deprivation, and then it hit me like a ton of bricks on day 4. I first had tonic clonics, and then a string of 5 complex partials in the next 5 hours. They then loaded me with ativan to stop them which reduced the seizures, but weened me off of that the next day, and I had another string of 4 or 5 complex partials. needless to say, the doctors got what they wanted! My epilepsy is no joke. Even with the meds I have auras almost every day but dont consider them serious-definitely not the single reason I would have the surgery.

Listen, I dont care if I have surgery and I continue to have seizures! (well a little maybe :) but if I am the same when I leave the operating room as I was when I came in, so what?! I gave it a shot!

The only way that I will look at this as a failure is if my memory and or speech is significantly impaired.
 

qtowngirl

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OMG CQ, (((HUGS)))!! That is what I am so scared of as well. She said she'll be taking my meds down to 'almost nothing' over a two-week period and is fairly confident it should work. But murphy's bloody law, I'll try sleep deprivation and everything too and walk out seizure-free. Then the following week will be all partials due to the stress and lack of sleep!!! Haha poor me poor me, always worried about everything, must leave no stone unturned. Maybe shouldn't have taken a day off today, too much time to think about it all.
 

RobinN

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Surgery was suggested to us for my daughters seizure disorder. Interesting though that nutrition was never offered as an option.
She has been seizure free and med free for one year, after making nutritional changes, and neurofeedback therapy.

So glad during the worst of times (six tonic clonic seizures a month) that I didn't follow the suggestions for surgery.
 

CQ:)

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OMG CQ, (((HUGS)))!! That is what I am so scared of as well. She said she'll be taking my meds down to 'almost nothing' over a two-week period and is fairly confident it should work. But murphy's bloody law, I'll try sleep deprivation and everything too and walk out seizure-free. Then the following week will be all partials due to the stress and lack of sleep!!! Haha poor me poor me, always worried about everything, must leave no stone unturned. Maybe shouldn't have taken a day off today, too much time to think about it all.
Hi Qtown,

Sorry, I didn't mean to worry you about the VEEG. Have you got a date yet for when you have your VEEG? I wish you all the best with your VEEG & hope you have some good results.

One of the tests I had to have prior to my surgery was a SPECT scan. With the SPECT scan you usually have it done twice, 1st is when you haven't had seizure & then they do SPECT scan just after a seizure. I had the SPECT scan a couple of months before my VEEG & if I had taken a complex partial during the time I was in for my VEEG I would've been given Ceretec then taken down for another SPECT scan. Because I only had auras they didn't do a 2nd SPECT scan on me.

The hospital I went through has a great epilepsy clinic & all the specialists, drs & nurses were fantastic, I could always have a joke with them :). When I was in for my VEEG every morning when the dr or the nurse would come in they'd ask me if I'd taken any seizures & I'd go nope. The nurses would say Todays the day lol. I said to one nurse this must be the only time that anyone would hope a person would have a seizure :pfft:

Before I went into the VEEG I was on 3 Anti Epilepsy Meds - 1500mg Keppra twice a day,Tegretol 400mg twice a day & Neurontin 800mg 3 times a day. Even though I was on such a high dose of meds I still couldn't control my seizures & was basically a walking zombie. I hated being on the Neurontin as it gave me the worse side effects - really tired, terrible mood swings (eg could cry or snap at anything which is totally not like me), had trouble concentrating & my memory was pretty bad. When I went in for the VEEG I told the epitiologist about how the Neurontin affected me & he took me straight of it. After I finished the VEEG the epitiologist just had me on the Tegretol & Keppra, I was on the same doseage of Tegretol but he had reduced my Keppra to 1000mg a day.
As soon as I was taken of the Neurontin both my Mum & I noticed a difference & I was back to my normal happy self :)
 
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CQ:)

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Nick
In a way I feel that you might be a bit like the boy who cried wolf. If you continue to lie eventually it might all just come back to bite you in the backside. You have said that you have lied to your epitiologists to get your foot in the door to have surgery & I have also noticed that in this thread your story keeps changing.
I have not lied on this forum! I am trying to be as raw as possible! spill everything to get critical responses and it has worked so far!
Nick,

In regards to my comment how you continue to lie it might come back to bite you on the backside I was referring to how you haven't been telling your epitiologist the truth & not about your actual posts on here.

You seem to be pretty honest about your feelings about surgery but I just noticed in some of your posts they do change a little bit.

Sorry for the confusion.
 
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Nick,

In regards to my comment how you continue to lie it might come back to bite you on the backside I was referring to how you haven't been telling your epitiologist the truth & not about your actual posts on here.

You seem to be pretty honest about your feelings about surgery but I just noticed in some of your posts they do change a little bit.

Sorry for the confusion.
Don't be sorry for anything!!! You especially have been very insightful and gotten me to think about things. You seem very kind and I appreciate the helpfulness!
 

Meetz1064

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I'm curious

as to how you think that 600 mg of Lamictal is a LOW dose. Have you actually checked out the recommendations of dosages for Lamictal? 600 mg is the high end.......If you work for BCBS, I would think that you would be a bit more aware of the prescriptions, their costs, etc in addition to the same things for the same for the brain surgery.

You REALLY need to be honest with your neuro. You're doing yourself a disfavor by being anything less than honest with him/her. Seriously. And you're doing YOURSELF a serious disfavor as well.

I've NOT had brain surgery of any type, though I do face the possibility of it someday for an entirely different reason, and I do NOT cherish the thought at all. And my brain surgery won't even be that complicated....or shouldn't be, at least.

Yes, the loss of cognitive ability is a major concern. But. There is ALWAYS a flip side to every coin, unfortunately.

YOU are the one making the decision, not us. And yes, I may seem as if I am being overly harsh at the moment. To be truthful, I probably am. I honestly don't think that you have thought this out well. I don't think that you've researched your medication, the operation or your seizures well enough to know what's going on.

Yes, re-kindling can cause problems cognitively if it happens continuously (as in a status event) on many occasions. But I would sincerely think it is more dangerous for you to have an unnecessary brain operation because you haven't told your neuro the truth about how often your seizures actually occur.
 
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YOU are the one making the decision, not us. And yes, I may seem as if I am being overly harsh at the moment. To be truthful, I probably am. I honestly don't think that you have thought this out well. I don't think that you've researched your medication, the operation or your seizures well enough to know what's going on.
I have researched everything. I know everything there is to know. Just ask! I'll tell ya! The doctors want me on 1000 mg of lamictal but I do not take it because it is incredibly high dosage and I cannot function. so i take 600 and go against doctors orders. and the 600 does the trick ok (besides side effects and auras) That is why I say 600 is low. The doctors told me that the manf say that 400 is a ceiling dosage which they say is a bunch of crap.. some people are as high as 1200 on lamictal or more.. I am going to go on fibbing to my docs about how well the dosage is working until it is time to decide. Leaving myself options. And if everything is a match made in heaven, and risk of complication is very low, than I am all in.
 

Meetz1064

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I'd think

that the manufacturer would have a better knowledge of the chemical makeup of the med than the doctors. The other thing to consider is what taking an excessive dosage (beyond recommended limits) will do to your body over an extended period of time.

Have you ever considered adding another drug on? Monotherapy doesn't always work. Trust me, I have 4.
 
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Have you ever considered adding another drug on? Monotherapy doesn't always work. Trust me, I have 4.
My doc just added another drug I need to pick up at the pharmacy today... Forget what it is called.. just another AED with the same side effects... But thats the thing! I am fairly well controlled!! except for a few auras which I dont care about. BUT I dont want to have to take 600 mg plus another drug to totally rid myself of seizures for the rest of my life.

If someone (hopefully a doctor!) came up to you and said "Take this magic pill. you are a perfect match for it. It is unlikely you will have long term side effects from it and your seizures will either go away (65% chance), be reduced, or at worst, not go away"

would you take the pill????

I know I would....

I guess I have a different rationale than everyone else.. For example.. I had contacts all my life. They worked.. they were sometimes a pain in the butt but they worked. So you know what I did? I had surgery! and I now have 20/20!!!!!

Obviously this in not lasik, but dont you see my thought process???!!
 

CQ:)

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My doc just added another drug I need to pick up at the pharmacy today... Forget what it is called.. just another AED with the same side effects... But thats the thing! I am fairly well controlled!! except for a few auras which I dont care about. BUT I dont want to have to take 600 mg plus another drug to totally rid myself of seizures for the rest of my life.
Nick,

Most Anti Epilepsy Meds usually have similar side effects listed but each med affects each person differently.
How do you know how bad the side effects of this new medication you have to pick up are if you haven't even started taking it yet?

I have been on 5 different Anti Epilepsy Meds & they all gave me different side effects. There was only 1 med which I would say gave me bad side effects & I had these issues the whole 12 months I was on that particular med. But with the other 4 meds my side effects were only very mild & only lasted the 1st couple of weeks while my body was adjusting to a new medication.

If someone (hopefully a doctor!) came up to you and said "Take this magic pill. you are a perfect match for it. It is unlikely you will have long term side effects from it and your seizures will either go away (65% chance), be reduced, or at worst, not go away"

would you take the pill????
In regards to your question about if I would take a magic pill that the dr offered me to help stop my seizures I would do my research into that 'magic pill' 1st & get some input from anyone else who may have tried this 'magic pill'.

If you have any loved ones eg - partner, family, close friends have you discussed with them about how you want to have brain surgery? If so did you take into count what their opinions were?
It is very important to talk to your loved ones about the surgery & get their opinions as well. You will need their support after you have surgery, especially for at less the 1st month after the surgery where you are still recovering & can't do much.
 
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Nakamova

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I guess I have a different rationale than everyone else.. For example.. I had contacts all my life. They worked.. they were sometimes a pain in the butt but they worked. So you know what I did? I had surgery! and I now have 20/20!!!!!
Interesting you should mention this. I had successful Lasik done, and my vision went to 20/15. And then a few years later I started on Lamictal and it's made my vision blurry. (BTW I'm on a truly "low" dose of Lamictal: 150mg/day)

Anyway, I do understand the appeal of surgery -- it's always tempting to say "what if". I would love to be seizure-free and med-free. For me though, surgery would absolutely be a last resort if I were having severe quality of life issues from the seizures and/or meds. I'm more excited about being able to try neurofeedback one of these days -- no surgery, no scars, no side effects...
 

Cint

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I guess I have a different rationale than everyone else.. For example.. I had contacts all my life. They worked.. they were sometimes a pain in the butt but they worked. So you know what I did? I had surgery! and I now have 20/20!!!!!

Obviously this in not lasik, but dont you see my thought process???!!
I get your thought process. It is magical thinking, we've all been there...... we all wished upon a star once upon a time. I had seizures.... You know what I did?....... I had brain surgery, thinking my seizures were gone since in a year's time I was still seizure free! Two months later....... my little world came tumbling down. And I am one of those who has tried nearly every alternative there is. Some surgeries work, some don't! Some alternatives work for some folks, some don't! We're all wired differently.
 
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I had brain surgery, thinking my seizures were gone since in a year's time I was still seizure free! Two months later....... my little world came tumbling down.
So what happened to you? did the seizures just come back worse? Do you have speech and memory problems now?
 

qtowngirl

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NICK, question... the tonic clonics you started having... are they on their own or secondary to your complex partials?
 
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