I'm considering VNS

Re: Re: I'm considering VNS

Submitted by Holly Ann on Sun, 2006-12-17 - 02:57

I'm 37 and my seizures started when I was in labor {14 years ago}. My doctor said I wouldn't have another one and was wrong.My son is fine by the way. I kept having grand mal seizures {being medicated} the doctors said you must be having pseudo seizures.They did every test available and were never able to find anything wrong with me other than suspecting that the eclampsia I had while pregnant had caused me to continue to have seizures. I moved to Utah and saw the University doctors. Its much different from private hospitals. They have a variety of neuroligists along with residents that work together to figure out how to diagnose and treat you.I was soo frustrated that medication wasn't doing anything for me I asked my doctor if I could have brain surgery. Plus my seizures were getting worse. I had a PET scan and it showed that I had continous seizures all over my brain. He said it was like a fire works show that lasted 3-5 days.That meant that brain surgery was out of the question-I asked for a vns and got one in 1998.My seizures are called "status epilepticus", like a coma but you are awake they last as long as a week and I'm hospitalized for it. I usually spend a week a month in a neuro sac unit giving me from 4-50mgs of adivan to bring me out. Its a real serious type/life threatening mmost likely to die is how it is described. But I have them, can feel it coming/aura and the monitors show that I'm in status and yet I'm still alive. I have not suffered any brain damage from my seizures being so long either. Last year my doctor told me he wanted to turn my stimulator off because he thought it wasn't helping to control my epilepsy.You'd think with 3600mgs felbamate a day, 60mgs phenabarbitol a day,and 275mgs a day of dilantin would keep my brain from freakin out but it doesn't. The VNS was at a high rate also and I had a replacement put in at the first of last year cause I was afraid of the battery running low. I was scared at first because I'd gotten used to it coming on every five minutes. My voice was scratchy or hoarse while it was on. The magnets would turn it on but never helped stop a seizure for me. I was afraid to wear a seatbelt and have a letter from my doctor that a judge signed, plus the highway safety orginazation approved it also and recorded. After I got the replacement it seemed strange to me because you can see it under my skin. I showed this to a doctor and I almost turned it around {under the skin} I asked what would happen if it did turn over and was told it would be o.k. because they leave extra wire in. The first doctor being a neuro surgeon did a great job on my throat and I have to really point out the scar to someone. With the new one has created this extra skin at the top of my arm I have been scared someone might see it and think I have an extra nipple. A resident that I know had told me that I can have the stimulator removed but the wire stays in. He thought it was resonable since its turned off for so long. The wire looks like a vein in my throat. Iguess I'll have to live with that now. So my experience wasn't great with one and I had to get used to speaking in a normal tone {everyone said I was talking real loud after it was turned off} again. But everyone is an individual so it may help you. Do some research find out about the company, side effects, ect.. Then you can choose with the comfort of gaining knowledge about a decision that will change your body/life! Good luck, H