Is a Vagus Nerve Stimulator (VNS) for Me?
After half a century on medications to control my epilepsy, I've had enough "cocktails" to stump a bartender! Haha!
Kidding aside, no mixture of medications or juggling the amounts or number of doses satisfied either my neurologists or me. A week in the hospital for an EEG simply showed that my affected brain had grown from the right temporal lobe of my youth to include both hemispheres of my brain so that I am now inoperable.
The early days of epilepsy surgery
In 1994, I met some surgical survivors at a support group. Surgery was then rising in popularity, particularly for people with the worst seizures that were uncontrollable with medications. The "kinks" were being worked out with this new concept.
One person I met had gone from having seizures daily to having one weekly – except it had left him unable to turn his neck and back. A woman was delighted that people wouldn't think she was "strange" when surgery reduced her from having 5 or 6 a day to once a week. But my impression was otherwise, because after surgery, she was unable to lift one ear from her shoulder and was continuously twitching.
Refusing to consider surgery as an option
No, siree! If that's what people called relief, I wasn't going to let anyone cut anywhere on me. Besides, I'm a writer. My right temporal lobe is the haven of emotion, creativity, and social communication, and if Truman Capote, Lewis Carrol, and Dostoyevsky – to name just a few – had been able to become famous with epilepsy, I was determined to do so as well!
But such was the "Iron Age" of surgery. I frustrated my epileptologist of 5 years by 2013. He was very accredited, and I was stubborn, naive, and didn't do my homework. Therefore, he kept trying pharmaceutical cocktails at my insistence. After a scary seizure experience caring for my infant daughter, I followed his suggestion and got hospitalized for tests.
Learning what VNS really was
I still didn't understand what a vagus nerve stimulator (VNS) was about. The vagus nerve runs from the lower part of the brain, through the neck. When it is stimulated by electrical impulses, they travel to certain areas of the brain, altering its activity to certain conditions. (It had been approved years before by the FDA to treat severe depression.)1
Fortunately my sister, a pharmacist, had me speak to a friend who had gotten a VNS. It did mean surgery, but was an outpatient procedure that was only 3 hours long, like a dentist's trip. Nothing at all like "butchering" my neurons like I'd erroneously assumed.
VNS is like a "pacemaker" for the brain
It only has 2 parts, neither of which is in the head. One is an electrode that wraps around the vagus nerve — a "service tunnel" into the brain – and the second being an implant in the chest, beneath the collarbone. The incisions are small enough that no one else would notice unless they were scoping me out to be a male model!
As it was explained to me by doctors, the VNS is something like a "pacemaker" to the brain. Every 5 minutes, a 30-second burst of electricity is sent into my brain. It helps my brain's circuitry run at a steadier, more even pace.
What is VNS like?
I am provided with a magnet, smaller than a matchbox that I prefer clipping to my bel, while some people wear it on a bracelet. If people feel an aura, they touch the magnet to their skin above the implant. That immediately sets off an "unscheduled" burst of electricity that will hopefully stop the aura from exploding into a seizure.
Can you feel the VNS?
No doubt you're wondering if I feel all these electrical charges? When I first got it in 2013, I was aware of it firing whenever I was thinking about it, but not uncomfortable, and only in my throat area. The best thing I can think of comparing it to might be to a momentary feeling as if you inhaled some dust when you're house cleaning. Usually, if I'm not reading a book in my lap so that my chin is doubled onto my neck, I'll feel nothing at all.
An epileptologist can raise the power of the implant based upon whether there is a need to do more, as in my case. He did that by laying a hand-sized device upon the implant for less than 5 minutes.
My seizures were reduced
No one should get a VNS with the notion it will cure their epilepsy, because barely 8 percent will become seizure-free. However, a 60-percent majority found the frequency and/or severity of their seizures lessened.2
My seizures reduced from every 8 days to 3 weeks, and their severity lessened. Astonishingly, my wife and daughter haven't realized my VNS stopped auras or made seizures unnoticeable until I told them later.
Effects of VNS on my voice
The electrodes in the neck are adjacent to the larynx ("voice box"). In my case, once we substantially increased the power to my needs, my voice might be wispy, like a sore throat, but only for the duration of the stimulation. You must realize, that is only 10 percent of my time. Unless you’re a radio host or professional singer, you don't need your voice to be 100 percent all the time.
I enjoy that my friends, who know I love movies, told me I sound like Marlon Brando from "The Godfather." My Alexa and Google Drives don't respond to my "VNS voice," so I just wait a few seconds before giving them my instructions.
The inconveniences are worth it
If I'm immersed in a serious conversation with strangers when it goes off, I ask them to excuse my voice because of a medical implant and everyone accepts it without asking embarrassing questions. Friends don't care either. I often read scriptures at church for which I need more than 5 minutes. If I hold my magnet on it for about 10 seconds, it automatically shuts off for 10 minutes.
The only other "inconvenience" has been when airport security officers question me what the magnet is for. I flip it on my chest so they can hear it, and they see my device when they X-ray me. So really, the biggest inconvenience is taking off my shoes for them!
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