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22 year old nervous about brain surgery

Tue, 09/27/2011 - 11:38
Topic: Surgery and Devices

Hi, this is my first post

I'm 22 and have had partial complex seizures my whole life. I've recently been looking into surgery now that I've graduated college and want to live out on my own and can't drive. Over the past 6 months I've had a variety of tests that I'm sure many of you have had...EEG's, PET scans, MRI's etc..and those were just to locate the seizure activity.

 I met with a neurosurgeon and he told me that through the tests they couldn't exactly locate where my seizures were coming from, but that it was the right side of the brain, and most likely it was the parietal lobe. They want to do 4 surgeries in a matter of 6 months, the first of which includes putting a GRID in my brain to possibly pinpoint exactly where my seizures are coming from. I guess I would just like to know if any of you have experience with this or have had this surgery before. I'm nervous trying to make a decision because of the risks..swelling of the brain, loss of cognitive function afterwards etc...I mean is it worth the 50/50 chance of being seizure free?

Comments

Re: 22 year old nervous about brain surgery

Submitted by bumbuldorf on Sun, 2012-01-22 - 14:45
I was 37 yrs old when I had a front lobe lobectomy (sp)(I was having any where from 15 to 25 seizures a month) although it took 6 hrs. I knew God was in control so I was't nervous because what ever happened He had a reason for it I just praise Him for allowing me to come through it with no complication. Now I am having about 6 to 9 seizures every 2 months depending on my stress level and the mood I'm in bumbuldorf

Re: 22 year old nervous about brain surgery

Submitted by Lee Anne on Mon, 2012-01-23 - 08:45

Good Morning,

I have har epilepsy for 48 years(since birth).  Ihave Gelastic, Complex Partial and Grand Mal. When I

was younger i just had  my Gelastic seizures, but when i got older i started to get my compex partial seizures, and at the time i had 3 little children.   In 1997 i was put into the Hospital For Joint Diseases in New York. 

my doctor was Orrin Divinsky and he found out that my epiiepsy went from my right side to my leftand back my right.  Also they found that  i did not need2 out of the 4 drug that i was on.   While i was there this was a video eeg with a grid on my brain. I was in for 2 weeks and they had me off of all meds and found out that i am prone to grand mal seizures.  Since then i have moved to Indy and found a really  good doctor.  Had a visit last monday and was told that i have tried every seizurre meds out there and it is time for brain surgery.  First they are putting in the hospital( IUPUI)here in Indy on Feb 6th at 7:00 am till Feb11th.  Then they  decussit and decide where i will go, i am nervous but my doctor feels that this is my best bet and i trust him.  I will let you know when i go ,where i am going and how it turns out.  

God Bless

Good Morning,

I have har epilepsy for 48 years(since birth).  Ihave Gelastic, Complex Partial and Grand Mal. When I

was younger i just had  my Gelastic seizures, but when i got older i started to get my compex partial seizures, and at the time i had 3 little children.   In 1997 i was put into the Hospital For Joint Diseases in New York. 

my doctor was Orrin Divinsky and he found out that my epiiepsy went from my right side to my leftand back my right.  Also they found that  i did not need2 out of the 4 drug that i was on.   While i was there this was a video eeg with a grid on my brain. I was in for 2 weeks and they had me off of all meds and found out that i am prone to grand mal seizures.  Since then i have moved to Indy and found a really  good doctor.  Had a visit last monday and was told that i have tried every seizurre meds out there and it is time for brain surgery.  First they are putting in the hospital( IUPUI)here in Indy on Feb 6th at 7:00 am till Feb11th.  Then they  decussit and decide where i will go, i am nervous but my doctor feels that this is my best bet and i trust him.  I will let you know when i go ,where i am going and how it turns out.  

God Bless

Re: 22 year old nervous about brain surgery

Submitted by kat908 on Thu, 2011-11-17 - 14:19
Hi--I started having seizures when I was 5 months old and always in my sleep, I am now 53 yrs. old. Noone knew about them until I was married. It started with my husband hearing moaning and he would wake me up at 5-6AM. I would wake, respond and go back to sleep. One morning I wouldn't wake up and had a grand mal right in front of him, woke up in the ambulance. Went on meds that I would become immune to quickly and would have more seizures as time went on. Doctor told me I was a prime candidate for surgery. Went through all those tests as well and they located the area. Took tests a few more times to verify that that was the only area causing seizures. Finally decided to go in for surgery January 2003 and came out feeling like a while new person. Yes, I still take meds but at a much lower dose. So what I am saying to you is to keep persisting to locate the area(s) where it's happening and go for the surgery. You will be extremely happy you did. You brydy23 andDnasty both have my support 110%!!!!

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