Epilepsy Surgery?!?

edepew151

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So I've been on 4 different medicines and I have a VNS, but I'm still having seizures quite often. I went to my neurologist last week and he said he wants me to start considering epilepsy surgery. It absolutely terrified me!!! BRAIN SURGERY?!?! I was just wondering if anybody here has had it done and how it worked out for you? Did it change your personality or anything? Would you recommend it? I need some first-hand opinions here. :ponder:
 

CQ:)

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Hi edepew,

I have left front temporal lobe epilepsy which is from scarring on my brain. My neurologist suggested to me in 2009 to think about having brain surgery after he tried me on 5 different meds, none of which controlled my partials.

I knew there were risks involved in having brain surgery but chose to have the surgery anyway if it could help control my seizures (in particular my auras which I had the most). The idea of brain surgery can be scarey & it is also a big step but I'm sure other posters who have also had surgery can give you their input as well.

I had to go through a series of tests before I could have surgery & on March 10 this year I had left side frontal lobe labotomy. I was lucky enough to have a good recovery, I am currently almost 10 months seizure free & aiming to be 12 month seizure free.

Have you had a look in The Laboratory section of the forum where brain surgery is often discussed? Also if you ever get a chance feel free to look at my thread Almost Time (found in the Laboratory) which is where I posted all my updates on my surgery & my recovery.
 
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I had brain surgery to. First what kind of brain surgery? For me it was tough. But it helped me. Know your Dr.s . I brought somebody in all my apointments. They wrote everything down. Helped me asked questions. Mine was suppose to be a simple surgery. Blood transfers, later infection with B cells and coma. This is rare. But ask about it anyway. You deserve to have the answers. And again, always have somebody by your side or tape record its your right. Just let them know before you go in for an apointment so they can tape it to. Good luck Teresa
 

pedsneuro

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edepew151:

it's a scary idea to have surgery, but it's critical to ask your doctor these questions. The answers are so specific to the individual that others' experience (even though it's true for them) won't be relevant to you.

The main reason for this is because the effectiveness and side effects of the surgery depend on the location in the brain where the seizures start (see here: braininstitute.mch.com/wiki/Seizure_onset_zone). Unless you hear from people with seizures in the same location, it won't apply to you.

And your doctor might not even know where your seizures start, yet. The process of answering the question about seizure onset zone is called a Phase I evaluation (see here: braininstitute.mch.com/wiki/Evaluation_for_epilepsy_surgery)

It usually includes several tests (including video EEG, SPECT, PET, and/or MRI that will (hopefully) help your doctors pin down where the seizures start, and how to help them.

I hope that helps answer your question.
 
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Cint

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Hi edepew,

I had a left temporal lobectomy back in 1990 and was seizure-free for 14 months. The seizures came back worse than before surgery for me. Before surgery, I was experiencing 3-4 CP seizures a day. After surgery, I didn't have as many CP's a day, but I did have several a month that progressed into bad TC seizures. Not only were the seizure more intense, so was/is the depression! (Docs don't tell about this issue.) And memory issues. My damaged area is the hippocampus.

I had to have the WADA test done to determine where the seizures were starting. That was done a month before the actual lobectomy. Here are websites that explain it:

http://www.epilepsy.com/epilepsy/surgery_WADA
http://www.epilepsy.com/EPILEPSY/types_surgery

The surgery has improved since 1990 and my neurosurgeon(s) were going to do a 2nd brain surgery, but my damaged area is too deep and doing so would cause me to be an invalid and be like an Alzheimer's patient. Therefore, I had the VNS after trying 8 more meds. To this day, I still have a few CP's a year.

So, to answer your question, it all depends on where the seizures originate, how intense, etc. There is always a risk in all types of surgery. Good luck in your decision.
 
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I had a right temporal lobectomy in 2004, seven years after my diagnosis. I think I had taken six different meds at that time. There was no problem with neither the tests leading up to the surgery, the surgery itself or the recovery. And I got to see Minneapolis/St Paul for the first time because Salt Lake City was scared of me :) It left me without seizures for six months with no answers why they came back suddenly, but I decided they weren't quite as bad as they were before the surgery. Good luck with your decision!
 
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The doc wants me to do all the vns stuff. But I am doing or finnishing the suit I have agianst Alex
s school first. And get some more counseling on how to lose the wheight I gained when he was molested. Life goes on.
 

pita300

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Hi edepew,

Like Clint I had surgery about 25 years ago. I had 4-5 complex partial seizures a day. almost 6 months to the day my seizures came back.. Grand mals. They would start and keep rolling one after another. I spent alot of time in hospital emergency rooms. My doctor finaly found a combination of meds that controlled my seizures. I have been seizure free for about 15 years. Do I regret the decision to have surgery.. no I think it was the best option for me at the time. I drive a car and live a fairly normal life with out seizures. Good luck with your decision.
 

poppie948

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I suffered with seizures for 50 years.............18 different meds over the years...had petite mal... gran mal... absence...and complex partial sezs over those years FINALLY a Dr had me go to the Cleveland Clinic here in Ohio and go through a series of 8 test ...I was a candidate for surgery....had my left temporal lobe surgery 10 yrs ago and have not had a sez since
 
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I had three yes three brain surgeries. It started out with drop seizures so i had a right frontal lobectomy. it work for a while then i started looking into mid air and more drops. I was stuck in the house or wheelchair all day everyday for safety. I lost three teeth and damaged my skin with marks from falling all the time. so i had to have a hemisperectomy. They take half the brain and disconnect it from your other side of the brain. I am now partially paralyzed (yes they told me) on my left side but you cant tell unless you asked me to run or move my left hand. i walk with a small limp but i wouldnt change it for the world i can do anything now and i love it!!!!
 
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