My son is Dx with Lennox Gustaut syndrom. A VNS is part of the treatment protocol. Hes done fine with it.

@A MyEpilepsyTeam Member Did you doctors tell you a reason they can’t remove it? because the VNS is something that can be taken out, there will still be some of the wire around the nerve but they can take the rest out. I’m getting mine taken out because it has not helped

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A MyEpile...

Hi, how are you and your son doing? I had the VNS for about 2 years now. I have problems with mine. The Dr's always have to change the settings on it because it would be to strong to the point where it hurts Sometimes it feels like it's goin off more then it should.So that makes it hard for me to talk,its hurts my throat alittle. Later on we found out that it doesn't work for me. My Dr's ended up telling me that it was pointless of getting it. Now I still have it, because you can't remove it, just shut it off, which the lady that helped me with it wouldn't shut it off.

My son has one. The side effects lessened over time but I can tell when its working because his talking isn't fluid sounding.

I understand. I thought I had made a big mistake when mine was inflated. My throat was affected. But now it works good. My seizures last only about 10 to 15 seconds. The only thing my husband tries to do is record it so the neurologist can see some or all of the seizure. It helps me and them a lot.