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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
@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.
@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.
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.
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 💪🏻
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