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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

His Awaiting An Appointment For Vagal Nerve Procedure Has Anyone Had It Done And Does It Work

A MyEpilepsyTeam Member asked a question 💭
Galway, IE
March 13
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A MyEpilepsyTeam Member

I got the Vagus Nerve Stimulator (VNS) when I was 17 years old. It turns on every 4 or 5 minutes and vibrates like crazy. It messed up my speech and tickled my throat to the point where I would cough. Eventually I got used to it. That is until they raised the power. Then it would drive me crazy again. We never saw any improvements in my seizures so I opted to have it removed. Now I have a Neurostimulator (RNS). It has a better outcome.

March 13
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , Our team member, @A MyEpilepsyTeam Member, felt the VNS wasn’t helping him much & so he had it removed & got the RNS. He could give you some info on his experience with both devices. Your friend in Texas, Becky

March 13
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member , Our team member @A MyEpilepsyTeam Member use to have the VNS & he could share his experience with y’all. He felt it wasn’t helping much & so he got it out & got the RNS & he feels it’s reduced his seizures a little but he still has them. Good luck with the VNS. Your friend in Texas, Becky

March 13
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I chose to have my VNS completely removed when it didn’t help me. I could have just had it turned off too.

March 19
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member

My son got his DBS 8mos ago. We're still trialing different programs. His seizures actually got worse, but his neurologists think it's not related to the surgery, but the progression of his epilepsy.
His VNS is also still turned on. I think we'll leave it for now, I don't want his seizures to get even worse. Did they actually remove the vns, or just turn it off when you decided it wasn't helping your daughter?

March 19
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