I had a VNS implanted about three years ago. The surgery involved two incisions, one under the left arm and one on the left lower front of my neck. My neurosurgeon promised a scar between 1-3 inches but it’s probably closer to four. Of course, I would much rather he get the surgery right and have a bigger scar than the other way around. Someone messes up your vagus nerve and you know about it, pretty much forever.
VNS Effect on Self-Image
Perhaps oddly, I found having a large scar on the front of my neck rather damaging to my self-image. It may seem shallow but I felt like a freak for quite some time. It really didn’t help having a device implanted in me either. I felt like I wanted to claw the foreign object out with my fingernails. It just all felt so wrong.
Turning On the VNS
A month after implantation the VNS therapy device was turned on. Only doctors who are certified by the manufacturer can do this and they are the only ones with the equipment. There are very few of these doctors around.
So I saw a new doctor, one of the special ones, with the special device that could communicate with the computer now in my chest.
Alas, my doctor made a mistake when he turned it on. He ran a diagnostic that was four times the dose that should have been given to a new implant. The pain was beyond, well, pain. It was instantaneous, excruciating agony with accompanying choking, coughing, screaming and an inability to breathe. I felt like I was being strangled to death from inside my throat.
It was probably the longest, worst 30 seconds of my life.
Rest assured, this is atypical.
What the VNS Feels Like Today
Once set correctly well, it still hurt as it electrocuted my vagus nerve. It’s not surprising, really. Electrocution doesn’t really have fun overtones.
The electricity was turned on for about 30 seconds each hour. Over time the “dosage” is increased by manipulating several variables available on the device.
During what is laughably termed stimulation, there is still pain in my throat, my throat still constricts, and it hurts to talk, that is if you can understand me and I’m not coughing. This isn’t exactly, or anything like, what they describe in the brochure.
Now don’t get me wrong, some people find the device unnoticeable after a time, I’m just not one of those people.
And Now, VNS Magnets ‘R’ Us
And perhaps most annoyingly, I have to carry around a magnet (just looks like a black plastic rectangle) that can be used to turn the device off, should it malfunction. I also have to use it if I want to talk when the device goes off, like, say, during an interview or a big fancy presentation at work.
Much to my chagrin, people at my last job assumed it was for my heart and assumed that if I had the magnet over my chest it was because I was so stressed it was causing heart problems. They, then, perceived me weak and incapable. No, I didn’t find this out for quite some time.
Does VNS Work?
And as to whether VNS works? Well, for me I would probably say no. But it’s really tough to tell because it actually takes a full year of having it on to really assess it, and it’s impossible to tell exactly how this year is compared to the last between the 10+ medications that have happened since now and then. But again, other people react differently to VNS.
Would I Recommend VNS?
My advice is this: don’t get stuff implanted in your body unless you’re really, really sure you want it there for the rest of your life. It’s expensive, it’s painful and really, there are things about it you won’t anticipate, and all the doctors will make it sound easier than it is. It is easy for them. They don’t have to wear it for the rest of their lives.
(FYI, the VNS device can’t be explanted. The computer can be surgically removed, but the wires can’t be due to risk of vagus nerve damage.)