Epilepsy & Seizures Support Group

I know how you are feeling with the seiz. getting out of control and husband getting mad and really how the memory is. After 30 yrs. of epilepsy, my Dr. said it was time to start thinking of surg. Last march my husband and I started getting the testing done. For some reason things started to happen.My son ran away, my daughter broke her leg, I hurt my shoulder at work...etc...Our medical bills began to pile and we couldn't afford to do it right then. Things began to get worse. The year ended with my daughter getting hit by a semi-truck on dec. 30. Then this year came on and my seiz. were coming more often. The Dr. was really serious about the surg., but my bank account was running low. One night while doing dishes, I seen something on the news about a young later with epilepsy in the same condition and decided to find a clinical trial research project who did things for free. I decided to get on the internet and found one for myself and actually qualified for it. It is a research project comparing radiosurgery to temporal lobectomy. They have not started recruiting yet, but I am on the top of the list. It is also done professionaly. I can't wait.

Hi There!

My name is Kim ! Back in 2003 I went through the whole ordeal !
Yes, I was frightened like hell ! I must say the operation paid off
in the long run ! I suffered with seizures for 33 1/2 years, and now
I've been seizure-free over 6 years now ! I know you're scared and
nervous, but go for it ! I've become a stronger person out of it !
Imagine how you'd feel, by not suffering the seizures ! I'll be glad
to help give you strength !

Kim

That sounds great kim. It makes me feel more at ease. I am a little nervous, but I have heard so many good things and how much this surg. can help, that I am actually very excited about it. The rest of my family is very excited as well.

G'Day, I just actually had Right Temporal Lobectomy surgery done in May this year and I haven't had a seizure since. I know what you mean about the fear in such an operation, but what they did here was let me have a chat to someone that had the operation prior to my decsion....Also what I did is carry a pocket size notepad & pen around with me which helped as my memory was having problems before the operation as well. If you need anymore questions answered don't hesitate to ask me and I will tell you what I experienced myself which may help.
Good Luck

Hi, I understand how you feel having Epilepsy. I'm in my fifties and have had seizures since I was eleven years old. It wasn't easy but I never gave up. If anything having Epilepsy made me stronger. Yes, I had a (Left Temporal Lobe) Surgery in August of 2000. and have had only 10-12
seizures since then. In Spring of 1999 I had the vagus nerve stimulator and since it wasn't helping in controlling the seizures I had the Brain Surgery. Regarding medication I was taking over 30 pills a day. I was scared but I was also excited in knowing that I might not have another seizure (Seizure Free) again.

Hi, I'm still learning how to use the computer and apparently I must have hit something by mistake where I didn't finish my reply,. When I was thirty yrs. old I almost died, I survived second and third degree burns over 40%
of my body. I had to have three skin grafts. This happened when I had a seizure while taking a shower as the water scolded me. I summoned the raw strength to get through the time of trial, as this made me so much stronger because I didn't give up when the pain was at it's worst. After being scheduled in having the surgery. Every time I thought of the burn accident and what I went through ,how I always prayed and asked God to help me and to relieve me in having seizures.Even though I was under alot of anxiety and stress before having the surgery. How thinking of what I had to go through after having the burn accident helped to be positive and how I wanted to have the Brain Surgery.

Oh gosh, I so know how you feel epi. About 11 or 12 yrs. ago was the last time I ever drove because of an accident I had by having a grand mal while driving. I woke up surrounded by police and firemen with my car crashed into someones trailor house. The fact that no one was hurt made me so extremely thankful to god. I have also had one in the shower. I was not burned and again thank you god. One time I woke up from one and noticed I had a cigerette burn in my shirt. Again no one was hurt. About 5 yrs. ago I had an angel tattood on my shoulder as a way to show how I must have an angel looking over my shoulder. I myself am waiting to have surgery done. I am very nervouse, but near as excited about getting rid of this. I've been dealing with epilepsy for over 32 yrs. and have to take 3 different meds. (26 pills) a day. Nothing could make me more happier than getting rid of this.

Hi,
Besides having the Brain Surgery. I also had the Vagus Nerve Stimulator . Ihad it on for about 9 months and was on alot of medication (5 different types of pills a day - was taking 30 pills a day). I was working at the time and at times I fought with myself to stay awake. Now I take 5 -6 pills a day. What a difference! Until last year after I lost my 19 yr old cat (had to have My Pusscat put to sleep) I was seizure free for over eight yrs. Since then I've had about 10-12 seizures. 7 of them I had since I was having trouble ( where I was not able to turn it down. There were times the temperture was as high as 80 degrees. Luckly , I was able to get a maintenance person to fix it and I haven't had any seizures since. I never tried going for my drivers license especially since it's not safe to drive here.Between the drivers and the town people working on the roads. I'd rather take a public bus . Even thou I had a a few seizures I stll consider myself "Seizure Free". My father died when I was only10 yrs. old and I feel that his my angel whose watching over me. Especially after having the burn accident and there also were times I had seizures and hurting myself so bad where I had to go to the hospital. So I understand what your going through.

I just got a card for a appointment for my next test, when I have not recieved the results from my last test. What does that mean? Am I a canidate? Can somebody help me?

dont be nervous..........go for it..................will probably get rid of a lot of your seizures...............had the vns surgery done some time ago....was scared a little , now i am proud that i had it done..........less seizures.... : ) all will be fine for you...........praying for you as well..........tc...god bless..........love........hx