Community Forum Archive

I had VNS implanted in 1999 (two years after it was approved).  After it was turned on I noticed I seemed to recover more quickly after my seizures.  Other than that I didn't notice a great difference in seizure frequency.  I knew before I had the surgery that it was prone to causing changes in the voice.  But I also understood that the treatment could be stopped by using the magnet.  This was important to me since a favorite pastime for me was singing in choirs.  Well the magnet they had at the time was a block about as heavy as a chicken egg.  I had to create a garment to hold the heavy magnet in place or else it would move and set the device off at a higher setting and make singing more difficult.After five years of treatment with VNS I decided it was not worth it anymore.  The seizures didn't stop, and it wasn't worth the trouble trying to manage the unit to be on when I wanted it and off for several hours a week when singing.If I wouldn't be a singer I imagine I may have kept the treatment up for a little longer.  Maybe by now Cyberonics has updated their equipment and it has greater potential than it did twenty years ago.  Also if I had more frequent seizures the continuous cycling on and off of the treatment would have been less disturbing.  Mike 

Hi, Thank you for posting. It is important to remember when preparing for epilepsy surgery that every individual experience and path is different As Michael shared with his experience with the VNS device, the efficacy and side effects varies for each individual. Your healthcare team will review what options are possible for you and will help guide you through the proper evaluation and testing, prior to making a decision about surgery.Working together with your epilepsy team is the key to understanding your epilepsy and the best treatment options for you. Review our list of commonly asked questions about epilepsy surgery, learn more about the recovery process and common themes for people living with epilepsy & family members during their journey through epilepsy surgery,here: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgeryTo learn more about the VNS device please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns It’s also important that you to express any concerns you may have and talk with your doctors about your personal goals and expectations for epilepsy surgery. https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/surgery/goals-and-expectationsAdditionally, you may always contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline   Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates  to find support groups, events, and programs in your community.

I'm following this I too want to know first hand experience with vns

15 month since the surgery, still trying to adjust. ruined my sporting career! and still doesn't do me any good. maybe worth it if you have 20 seizures a day, otherwise...

I have had drug-resistant simple partial seizures as long as I can remember and endured a few grand mal seizures as an adult.  I had VNS implanted in 2015 and my simple partial seizures went away instantly.  I still feel an occasional sensation similar to an aura, but there is no partial seizure that follows.  When the VNS is on, I feel a little of this "ghost aura" sensation also.  I have used a bullet analogy when I describe it to my doctor.  The primer still fires but the VNS has removed the gunpowder from the casing so I no longer have to worry about the bullet firing.  I still take medications because they do seem to control the amount of the "ghost auras" I have.Now for the negatives:The first time it was turned on during implantation surgery, my heart went into asystole until the doctors turned the VNS off.  My doctors took a very cautious approach to activating VNS therapy and I have had no other heart effects since.The VNS turns on with sudden increases in heart rate as this can be a sign of an impending seizure.  During physical exertion like hiking and swimming, the VNS will cycle more often and it can really make it feel like you are on the edge of suffocation.  It forces you to take a slower pace sometimes.With that said, the positives far outweigh the negatives and I am very grateful to have found a therapy that finally treats my epilepsy.