Is the VNS (Vagus Nerve Stimulator) the right solution for your Epilepsy? Here’s my story…

For those of us who can’t control all of our seizures with anti-seizure medications, and surgery isn’t a viable option, what’s left? It can be quite frightening. Once you get the ‘NO’ on surgery and you’ve experimented with multiple meds, is there anything left that will help you take back your life from a life of seizures?

I’m always honest with people when they ask me about my Vagus Nerve Stimulator, and I have received a few email questions about the device during the past couple of weeks. I thought I would explain a few things to help those who might be contemplating the implant.

But first, a story. I also had to laugh when we traveled to Washington DC last weekend. It was my first flight with my VNS which was implanted a year ago, and of course the first time I had to pass through airport security. I was incredibly prepared…I had my ID card which is signed by Dr. Shah, and a letter from him briefly explaining how the device works. As I juggled getting my 4-year-old through and all of our carry-on luggage set on the belt, I stepped up to the TSA person and handed over my information.

“I’ve never heard of this,” she said in a kind way (yes, we are kind in Detroit!). “Do you have to always carry that magnet with you?”

She was very polite, so I proceeded to show her my scars and briefly explain how the VNS works.

Courtesy: Cyberonics

Courtesy: Cyberonics

 

“I guess I’ve never met anyone with Epilepsy,” she said with a slight smile. I told her that I’m sure she had, but perhaps they didn’t want to talk about it!  So, I ‘beeped’ and continued on my way with Hayden and Andrew in tow.

Now for the first-hand information…First of all, it doesn’t ‘hurt’ when it activates. You get very used to the device in terms of feeling it go off. Is it effective? For me, it has been effective-about 60 %- but you can’t go into the process expecting to be completely seizure-free. If you do end up with that result, lucky you! The two scars are truly minimal, and my Mom bought me a product called Bio-Oil to rub on my scars, and that helped immensely.

My scar on my neck!

My scar on my neck!

Do your homework, just like you would if you are starting a new medication! There are chat rooms and websites where you can ask people questions who have had the device implanted (just like people have done with me)! And the Cyberonics people are wonderful, you can call and ask them questions too. What does it feel like when it goes off? For me, it’s a slight tickle in my throat near my vocal chords, but it’s brief and as I said before, you get very accustomed to it. There is a good piece on youtube from 2008 which talks about the process, and I’m a bit partial…because my surgeon and my neurologist are featured! And, like everything with Epilepsy, no two people are the same. So if someone has a negative opinion of the device, or even an anti-seizure medication that you are considering, review their thoughts and then ask your doctor what is right for you. There are solutions to your seizures, you just have to work hard to seek them out!

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Updates and New Information on a Friday…-
April 30, 2010 at 9:30 am

{ 14 comments… read them below or add one }

Belle Smith April 3, 2010 at 12:12 am

I have a VNS-I’ve had it for about 3 (?) years; I decided-quite quickly after I had it implanted to stop using the magnets because they EXTREMELY painful for me to use. I also do not get the ‘tickle’ of the VNS working; that only happens when I go see my neurologist and she adjusts it.
I am a VERY LUCKY VNS patient-my scars have faded pretty well…no one I know notice them.
So, good luck to everyone w/epilepsy!

AnonEMouse April 28, 2010 at 12:26 am

I just tell the airport screeners I have a “pacemaker”. Trying to explain to the TSA that I have a “Vagus Nerve Stimulator” is like trying to explain nuclear physics to a newborn baby.
Keyword: “pacemaker.” What do you have? A “pacemaker”. You need a patdown because you have a “pacemaker”.

medical assistant April 30, 2010 at 1:34 am

this post is very usefull thx!

pharmacy technician May 18, 2010 at 11:49 pm

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school grants May 26, 2010 at 11:15 am

I’ve recently started a blog, the information you provide on this site has helped me tremendously. Thank you for all of your time & work.

Jeremy June 27, 2011 at 3:53 pm

I have had my VNS for about 4 years. Prior to that I was experiencing a seizure about once every 3 months and I had tried so many different meds and med combinations I was beginning to get frustrated. My doctor, Dr. Lindholm asked me if I had given any thought to VNS, I was not quite sure what VNS was all about so she sent me to get further details. Boy am I happy I did. Just like when switching any medication there is always that “break-in” period before you notice any change. It took awhile to get everything dialed in to where it needs to be, but I can gladly say that for over 2 years now I have not had one seizure and things are going great. I also no longer feel the “tickle” from the device activating.
I have had some issues with airport screeners, it is obvious that some of them arent too bright! I typically have a pat-down conducted; yes they can be time consuming, but I still make my flight, and sometimes I get through the security faster than my wife.
A question that I do have, is whether or not anyone has heard anything about the new imaging scanners. Is is safe to go through the new scanners with the VNS or should I continue to use the pat-down? If anyone has any answers I would be glad to hear from them.

Anon August 21, 2011 at 1:47 pm

Trying to tell the TSA agent that you have a VNS is like trying to have a philosophical debate with your dog. Just tell the TSA agent you have a pacemaker, give the TSA agent your water bottle that you “forgot”, and move on with your life.

Hubert Maier II December 31, 2011 at 1:33 am

Hi, i had my implant put in about 3 years ago, and for the past year I have a problem. if i turrn my head to left side and the implant starts,i have a real problem with bad “twiching” on the left side of my chest and neck. Sometimes it can be real painful.My Doctor about it and the only thing she said was “Do you want to have taken out” That is the last thing i want do because the VNS has been the thing for me. So i told her no. Does anyone have another sugg. of what i can do??? Hubie

Jack in the box April 11, 2012 at 12:49 am

VNS from Cyberonics ia a gimmick

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