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VNS Help
A MyEpilepsyTeam Member asked a question 💭

I need help and comments about how the VNS goes? I am so nervous for next month. But I know it will be worth it. How did everyone else's surgery go?

posted September 7, 2017
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A MyEpilepsyTeam Member

I had this done. But turns out im a non epileptic...so it basically was useless and had a lot of hard symptoms such as worsened seizures, difficulty breathing, a funny vibration in my neck everytine it turns on, sounding strained when talking, plus at obe point i had to keep the magnet taped ontop of my battery to keep it from sending me into repeated seizures. I also, when the doctor was adjusting my pusle width to a longer frquency, that my neck on the vns side, swelled up huge like a bullfrog. I felt like my neck was gonna pop. He turned it down and it slowly came back down. I dont know, hun, i still get cramps near and around the wire. Plus it isnt the most comfortable either. I had a bad experience. I wish i wouldnt have tried...too many complications for me...

posted September 8, 2017
A MyEpilepsyTeam Member

Driving Thats one reason im considering it, i have complex simple seizures, but its the occasional partials im worried about when im fatigued

posted September 8, 2017
A MyEpilepsyTeam Member

I LOVE my VNS. I would recommend it to anyone with epilepsy. The pain wasn't bad and the pain of the battery replacement surgery is even less. Even with 9 different medications I was still seizing multiple time a day. I was a medicine zombie for years and it was stealing my life. My doctor tried to talk me into it years ago and because of fear it took me 7 years to do it. I wish I could go back and get it then. I would have saved myself years of agony. I don't take any meds now and only have about 1 tonic clonic and maybe 1 partial a month. I am now married and have a beautiful and smart son. I still can't drive or work, but it had given me the chance too live life and be the best mother I can be.

posted September 8, 2017
A MyEpilepsyTeam Member

My surgery went well. And everyone was very helpful and nice to me. All it was is just in and out, but good luck next month!

posted September 8, 2017
A MyEpilepsyTeam Member

VNS latest model 106 AspireSR has 2 settings Manual and Auto detect. If its set to auto which is recommended for people who do not have Auras it will cut off a seizure before it happens. It goes off your heart rate. Ur heart rate increases prior to a seizure. Plus all VNS r implanted in ur left chest much like a pacemaker. Not ur neck. The leads go to the Vegus nerve in ur neck that stimulate the brain. I dont know alot about RNS, but VNS is recommended before RNS is tried because that actually is brain surgery VNS is more of an out patient procedure

posted September 8, 2017

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