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Vagus Nerve Stimulation (VNS) side effects and outcomes

Wed, 04/24/2013 - 11:14

Topic: Surgery and Devices

Hello all,

I recently had the vagus nerve stimulator (VNS) implant procedure completed, and now one month later, after the second increase in "impulse intensity", I am starting to develop very negative side effects. For me this is a hoarse (reduced to a whisper) voice that continues for the entire 30 seconds that the stimulator is on. For me the cycle is 30 seconds on, 3 minutes off, so this has become quite a nuisance, especially since I am a teacher and talking all day. I have heard of other people experiencing pain or tingling on their neck, head, or face, sometimes so severe that they have had to have the stimulator turned off and/or removed alltogether. However, I have also read that most side effects fade over time, and there is even the possibility of positive side effects such as increases in mood.

I am interested in hearing the stories of those who have the VNS implant and their experiences with side effects and how they manage those side effects. I would also be interested in hearing the outcomes, both good and bad, of having the implant for several months and years. Did the side effects eventually go away? Was there a strategy you used to help deal with the hoarse voice?

Were these side effects worth any positive results?

Thank you for your stories and opinions,

Comments

Re: Vagus Nerve Stimulation (VNS) side effects and outcomes

Submitted by hschauss on Wed, 2013-04-24 - 15:17

JW, My daughter had the vns implanted in July of 2012. At first,she coughed a sputtered almost every time that the device went off (same as you 30 sec. on 3 min. off). After awhile she was able to adjust to it, but each time it was increased she had several days of increased irritation. Her seizure activity has dropped from 4-7 times per week to less than 1 every 2 weeks. (She has tonic clonics just before waking), so we are feeling like there is a big improvement on that front. I hope that the severity of your lost voice diminishes over time and that it gets easier for you. HS

Re: Vagus Nerve Stimulation (VNS) side effects and outcomes

Submitted by french022000 on Thu, 2013-04-25 - 19:33

Thank you for all the information. I am looking into having the vagus nerve stimulator implanted in the next couple of months since all the medications they have tried me on have failed. I understand that there are risks as with any surgery but it is also nice to hear from people who have had the surgery that the surgery has helped. I would be lying if I did not say that I am a little nervous about what to expect but I know it has to be better than a seizure every 3 months or sooner depending on the stress levels.

Re: Vagus Nerve Stimulation (VNS) side effects and outcomes

Submitted by laura2paul on Wed, 2013-04-24 - 16:19

Paul & Laura Hogg Our Son had the VNS implant in November of last year and for the first few months had a cough and hoarse voice for the full 30 seconds of stimulation!! With each increase these side effects return before he becomes accustomed to the stimulation. These side effects are such a small price to pay for the huge reduction in his seizures and in how much more generally aware and happy our little boy has become!

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