Has Anybody Used VNS, If So, What Are The Pros & Cons? | MyEpilepsyTeam

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Has Anybody Used VNS, If So, What Are The Pros & Cons?
A MyEpilepsyTeam Member asked a question 💭

My son yesterday was recommended VNS Therapy. I'm very nervous and also skeptical about any kind of surgery these days. Plus it will assist me in speaking to him about it and if he wants to do it. Thanks

posted August 19, 2020
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A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member so one of the cons of the VNS is hoarseness voice changes and coughing so sometimes just to make sure that I don't end up coughing which doesn't happen often I just turn it off and my dr. is aware of that

posted September 12, 2020
A MyEpilepsyTeam Member

No. I’ve accidentally. sparked mine. Mine came with 2 magnets. One on a wristband and a loose one that has a belt clip. Wearing it on my wrist was sparking it, bc my wrist would pass over the area, not thinking about it. I now have it hung on a nail in the bathroom. I keep the other in my pants pocket when I’m awake.😊

posted August 26, 2020
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member I just looked through resources on this site and there is the topic of "Is VNS right for you" that might give Brad and yourself a little more insight

posted September 9, 2020
A MyEpilepsyTeam Member

I had a VNS in the past. Pros are that it is reversible! It isn't open brain surgery. That is why I went for it. My neuro tried to discourage me from it, but my thoughts are why not? It if can be undone it is worth a shot. Brain surgery can't be undone, VNS can. It works for a lot of people. Does it cure seizures? Generally no. I've only heard of a few cases of that happening. Cons are that it can be a little uncomfortable. After a few weeks though you get used to it and don't even notice it. At least that was the case for me. I didn't know when it was "firing" unless I was speaking (because it changed my voice a little). It stopped working for me after a while, but I was so happy I tried it. It is definitely worth a shot!

posted August 25, 2020
A MyEpilepsyTeam Member

I'm in university and in a year and a half I will be able to graduate with a BS in physical conditioning and minor in Management but I turn my VNS when I have to give oral presentations.My doctor said I can have it off for 15 minutes I don't know if your sons doctor will say the same but I have permission from my doctor to turn it off for that amount of time. I think the VNS really has changed my life in a good way.Also if you travel when you pass security be careful with the body scanners the usual on which is the metal detector will turn on the VNS.You have to let the security guards that your son has a VNS.

posted August 21, 2020 (edited)

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