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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.

I Just Need To Know If Anyone With This Device Has Had This Hardcore Feeling Before

A MyEpilepsyTeam Member asked a question 💭
Powhatan, VA

it’s a hard core burning feeling from the device in your chest up ur neck where the wiring goes. it’s like a vibrating burning, just a really really bad pain, my family said they could see the device in my chest popping out:/ i just donnnttt know what to do mannn

March 29, 2023
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I never had a burning feeling that hurt when I had the Vagus Nerve Stimulator (VNS). I just felt vibrations that would tickle my throat. The device always stuck out of my chest to where you could see the outline. So I would tell them about the burning feeling. It shouldn’t do that. It didn’t help with my seizures so I got it completely removed from my chest. So it is possible to get the VNS taken back out.

March 29, 2023 (edited)
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member That’s great that the removal went well. Hopefully it’s an option for @A MyEpilepsyTeam Member since her seems to be causing her more harm than good.

April 1, 2023
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
I have had my VNS completely removed. It didn’t cause any pain or damage. I’ve now had the RNS for 4 or 5 years.

March 31, 2023
A MyEpilepsyTeam Member

I think your device is defeated. Your Stimulator isn’t supposed to give out and burn feeling. You may want your Dr. Know

I’ve done the VNS in 2005. By 2010 the stimulator was dead.

August of last year, I had the DBS ( Deep Brain Stimulator) done. It’s still working and and I’m not feeling any burning feeling in my chest , from that stimulator.

March 30, 2023
A MyEpilepsyTeam Member

I have a friend with a VNS implanted that had those exact same feelings. I was going to go with the VNS before my neurologist recommended the RNS, which I have now. Depending on what type of seizures you have, that could be an option. I’m not too familiar with any risks removing the VNS but I’ll look into it for sure. I hope all goes well with figuring out a solution. Thank you for adding me to your team by the way. I returned the favor. Take care, stay strong 💪🏻

March 30, 2023

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