For Anyone Who Has A VNS Implant Or Knows Someone Who Does. | MyEpilepsyTeam

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For Anyone Who Has A VNS Implant Or Knows Someone Who Does.
A MyEpilepsyTeam Member asked a question 💭

How well is it working for you? Or is it at all? I had a VNS implanted July of 2017 & we haven't seen any progress. I'm just curious to how other people react towards this. Whether or not the outcome is worth it. I was told there's a possibility of getting mine removed once I need to get a new battery, but that won't be for awhile.
P.s. I have grand mal seizures every 2-3 weeks still.

posted April 9, 2018 (edited)
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A MyEpilepsyTeam Member

That doesn’t seem like much time. Can you have it adjusted much more? Also can you have a second opinion on the settings?

posted April 14, 2018
A MyEpilepsyTeam Member

I had my implant July 2017 also! I was having seizures daily and now I am doing great! Maybe a seizure every 6 weeks and even those aren't nearly as bad. If I am able to swipe the magnet, sometimes I don't have one at all or if my husband is able to swipe it during the seizure it only lasts a few seconds. I wake up feeling more with it and not confused and near death, lol. My stimulator is going to be turned up at least another couple of times and we are hoping that will stave off the seizures I'm having now. Has your doc mentioned how far he's planning to turn it up? Maybe a stronger setting will eliminate your seizures or at least lessen them in frequency. Good luck VNS sister!! :) :) :)

posted April 14, 2018
A MyEpilepsyTeam Member

I was told today that it is a two year commitment you are making when you decide to get one. That some see improvement sooner and others see improvement closer to a year/year and a half.

posted April 10, 2018
A MyEpilepsyTeam Member

Mine works. I hate the auras. But at least I know what to do when I get one.

posted April 10, 2018
A MyEpilepsyTeam Member

I have a VNS & it's my 3rd since 2007. It works great until the battery starts to die down. Then of course I start having more seizures. Least w/ this in mind, I know when the VNS has to be replaced.

posted April 30, 2020

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