Community Forum Archive

What is a VNS like?

Sun, 04/21/2019 - 16:51
My epilepsy specialist and my neurologist have both been introducing me to the idea of a vagus nerve simulator since they have a 99% success rate with it. Although they have said I need one yet they want me to think about it. I have taken 4 medications now, none have worked on their own and two of them have failed. I just started on a new medication so there is no true indicator on how well it is going to work for me so I am not sure if I need it yet. I was wondering, can anyone tell me what it is like to have one? How much does it change your voice? Does your voice go back to normal? Do you feel it? Any experience you had would be helpful :) Thank you!


Prior to my VNS implant I had

Submitted by birdman on Mon, 2019-04-22 - 21:28
Prior to my VNS implant I had tried a dozen medications and brain surgery to remove a portion of my right temporal lobe.  The seizures continued so I gave VNS a try.  I was on in for five years.  It did not stop the seizures, but I did recover more quickly from them.  It also had a wonderful impact on my mood.  I felt more confident.  Since I sang in choir I did not like the fact that it tightened the voice up and I had to wear the magnet in order to sing.  Maybe by now they have made it more convenient to shut off the device as the magnets have become lighter.  If I were considering the implant today I would ask my doctor about the trans-cutaneous VNS, or t-VNS, device.  I do not know if this newer version bypasses the vagus nerve in the neck.  Maybe it does not have the impact on voice as the original model does.  Ask your doctor.  

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