Epilepsy & Seizures Support Group

Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...

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Brain & Nervous System
/ Epilepsy & Seizures Support Group

anything about VNS?

zackary3
zackary3
I am trying to deside whether to have my VNS surgery or not,to help get rid of these partial seizures that will not stop. I keep finding good and bad things about it and need to personally talk to someone who has had it done.
deleted_user
deleted_user
I've had the VNS but I really can't be a spokesman. It definately has not cured my szs. I think I got it implanted in 2002 it has changed my voice and after you get it you can't have MRI's so if you do have it done get an MRI first. Other than that it doesn't bother me. When they first turn it on (or up) it makes you feel like you have a tickle in your throat and makes you cough, but that goes away pretty quickly. It may work for you. The docs say it may be working for me by reducing the power of my szs. Who knows...
Either way good luck
deleted_user
deleted_user
I had it done 2006 its the best piece of epilepsy equipment made.M fits used ti last over 1 hour having 9 fits at once now when you put the magnet across your vns my fits last 10 mins and only 1 fit. love shirl
deleted_user
deleted_user
I'm letting you know that I'm not a fan of stimulators. I first tried the VNS and it had no effect on my recovery. I moved up to an experimental treatment call the DBS (Deep Brain Stimulator)which also was a failure. My doc. actually informed me while on the operating table that the VNS would never completely stop seizures. Take caution in your choice.
deleted_user
deleted_user
I got my VNS in 1999....I recommend being sure you have a good doctor and that there are other doctors VNS qualified around. I am one that had an odd side effect that could have been avoided with correct programming but when I had this problem...my doctor was on vacation and I was on my own....trying to make sure I had a strong enough magent to keep it off and tape it to me was my only option since this doctor was the only doc around.
It took me a full year of it being off for me to totally recover. Now there are multiple docs qualified to choose from and programing is going slower and better.
I had been on 3 meds and still not seizure free now I am down to 1 med and seizuring less. I also suggest that if you have it and the feeling in your throat hasn't gone down don't allow the doc to up the programming. Since I spent years with it off because of the problem I am still with the same one I got in 99 but otherwise I would need a new battery by now...so you know that things like that are part of things.

For all the odd side effect which is listed in the pamphlet was left hemi diapgragm paralysis...it was painful, scary, and left me soar there. The doc that programmed me wanted to deni it was because of the implant but I have had every other doctor say yes that was because of the VNS and they could tell by my programming what went wrong.