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!