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Old 05-08-2019, 11:16 PM
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Second surgery?


I had my first brain surgery to stay alive. But I have considered a second brain surgery so to hopefully end my seizures. Is it worth it?
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Old 05-11-2019, 08:12 AM
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Hate to be so blunt, but only you and those around you can answer that question.
Remember, surgery ISN'T 100% able to stop seizures, though the odds are good, hence why I decided to go ahead with mine.
Personally, suffering from the lifelong side effects I have to endure (25% vision loss on both eyes, having the short-term memory/concentration of a gold fish, having the struggles of what I feel a decrease in IQ levels post surgery), I'd still have the surgery as the seizures seem to have come to a stop.

IF epilepsy was to return, and the thought of having to go through the torture of what I endured, I'm not sure I could do that unless I was categorically told, having surgery would 100% stop seizures.
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Old 05-11-2019, 08:25 AM
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Hi finalpoet,

I've had 2 brain surgeries myself the first one was a video e.e.g. where they put the electrodes directly on my brain and my surgeon told me that was more dangerous than the ultrasound surgery I had done to reduce my seizures.
I would listen to what your Drs. have to say and if there are any risks before going through surgery. I had a chance of going blind or being paralyzed but I knew if I didn't have the surgery the seizures would cause more damage on my brain so I had the surgery and all went well even though the surgery only reduced my seizures.
If I may ask what form of surgery would you have? I have been told that the gamma knife surgery is very safe and often people go home the same day as the surgery. I wish you the best of luck and May God Bless You!

Sue

Last edited by Porkette; 05-11-2019 at 08:27 AM.
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Old 05-11-2019, 08:35 AM
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Originally Posted by Itr786 View Post:
Hate to be so blunt, but only you and those around you can answer that question.
Remember, surgery ISN'T 100% able to stop seizures, though the odds are good, hence why I decided to go ahead with mine.
I agree with Itr
Only each individual can make that decision. In my opinion the best thing to do is discuss it with your specialists, think about both the pros and cons of surgery.
I’m assuming if you were to have a 2nd surgery they’d have to do pre surgery testing again to make sure you are even illegible for surgery and to see if they pin point where the seizures are coming from.

I had my surgery in 2011, I was 2 years seizure free and am taking focal seizures (partials) again. At the moment they’re not as bad as they were pre surgery. They have changed as pre surgery I always got an aura before a complex partial where I never know if I will get an aura or just go straight into the seizure. Also the other main issue I have is I tend to overthink and over evaluate every thing a lot more then I used to which my neuropsychologist said is common.

At the moment my neurologist is still working on the right medication combination to control the seizures and a 2nd surgery hasn’t come up. To be honest if they ever decided to offer me another surgery I would really think about it and there are a couple of questions I’d ask them (mainly my neuropsychologist) which I don’t even know if they could answer.
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Old 05-11-2019, 09:21 AM
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Generally my thoughts are that a second surgery is only possible if it becomes necessary. I've considered pushing for it but if I question it's necessity then it's probably not totally necessary, at least not yet maybe one day that I don't foresee.
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Old 05-11-2019, 11:08 AM
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I also agree ETR only you can decide each one of us may have opinion.Are you asking for advice or our opinions.my advice is I can’t and won’t give my opinion,I hope you receive the answer you want and that lies with you...Ask people’s experience of the surgery if they had samething and the doctor his opinion is the one you need
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Old 05-17-2019, 04:34 PM
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I had my first surgery in 1981 to save my life like you. Ultimately it's your decision on a second. I'm 2 months into recovery from my second and don't regret it. I took me a long time to make the decision but once I was comfortable with my team and their recommendation I went for it.
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Old 05-18-2019, 03:39 PM
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I had a left temporal lobectomy in 1990 and it was the worst mistake of my life. I was only seizure-free for 18 months. Then they came back with vengeance, as did the severe depression, plus the memory loss. People have a hard time with that, since I was only in my 30's when I had the surgery. The neurosurgeon said I could not have a 2nd surgery. I would end up like a severe Alzheimer's patient if they went in and operated again on my hippocampus. What did help control my seizures is the VNS.
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Old 05-18-2019, 03:59 PM
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Originally Posted by Porkette View Post:

I've had 2 brain surgeries myself the first one was a video e.e.g. where they put the electrodes directly on my brain and my surgeon told me that was more dangerous than the ultrasound surgery I had done to reduce my seizures.
I had this done, too. But I didn't really consider the electrodes being placed on my brain as "brain surgery".

Here is what I had done before the actual lobectomy:
https://www.epilepsy.com/learn/profe...eeg-electrodes
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Old 05-18-2019, 04:05 PM
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I was thinking the same. Having had various types of eeg scans, normal/sleep deprived/5 day video telemetry (or was it 7!?), and afew more that I can't think of right now, but I'm 'pretty' sure all wouldn't be seen each having brain surgery.

Last edited by Itr786; 05-18-2019 at 04:07 PM.
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Old 05-22-2019, 05:04 PM
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Hi Cint,

I understand where you are coming from since it was a test but my Dr. told me it was a form of surgery because they had to drill 7 holes in my head and I was told that this was more dangerous than the ultra sound surgery I had. So I'm just going by what I was told by my Dr. Wishing you well and May God Bless You!

Sue
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