Is There Anyone In Here That Has A VNS? | MyEpilepsyTeam

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Is There Anyone In Here That Has A VNS?
A MyEpilepsyTeam Member asked a question 💭

I have one but I have yet to meet someone who has one and I was wondering if anyone knew more about it

posted March 26, 2015
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A MyEpilepsyTeam Member

I have one, and I love it. It was the best decision I ever made. I would have up to 150-200 absence seizures a day, grand mals, and complex. My nuerologist is the best in the state. He tried medication after medication. Nothing was working. Now that I have the surgery I have maybe one absence a month. The main goes away fairly quick. It's so worth it though.

posted March 31, 2015
A MyEpilepsyTeam Member

I've had one for 10 years. I'm getting ready to go into surgery pretty soon to have the battery changed for the very first time.
My advice I'd give you would be to get a set of extra magnets to keep, in case you lose one or both.

posted July 5, 2017
A MyEpilepsyTeam Member

I have one. They can change the intensity without changing the level of that makes sense. There's a setting they can turn down to make it less shocking and painful without turning down the level f stimulation. These are two different settings within the machine. Once they adjusted that, I was feeling much better

posted June 7, 2017
A MyEpilepsyTeam Member

ChantelWolf, I just posted almost the same exact question! I have a VNS and feel almost alienated because of it. I've had it for like 8 years now. Maybe a few more. I have never met or talked to anyone else who has one. My situation is different than most in the fact that my VNS was implanted on the right side of my chest instead of the usual left side. This is because I had a Power Port on the left side of my chest, so they couldn't put my VNS there. However, they still attached the wires to my left Vegus nerve.
Maybe we should start a VNS Q&A/support type group or something like that.

posted March 6, 2017 (edited)
A MyEpilepsyTeam Member

Hello Rita, don't be scared just know it is a new experience though for all... If you want to talk more we can... :-)

posted May 1, 2016

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