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Vagus Nerve Stimulation: How Does Vagus Nerve Stimulation Feel? (Pt. 2)

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.

electrobrainSo 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.

spark

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.)

You can find Natasha Tracy on Facebook or @Natasha_Tracy on Twitter.

Author: Natasha Tracy

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28 thoughts on “Vagus Nerve Stimulation: How Does Vagus Nerve Stimulation Feel? (Pt. 2)”

  1. Nastasha:
    That sounds absolutely horrible! My understanding was that you tried the VNS if it had been found that none of the medications worked for you. Perhaps taking so many medications in addition to the VNS negated any positive effects it might have had?

    Leah

  2. Hi Leah,

    well yes, not my favorite thing.

    Honestly, it was a serious long shot. If you look at people with my history you’ll see that vns works almost none of the time according to research. True a very big-time doctor gave me extremely positive numbers, but I would say they vary tremendously from real people in my situation.

    Regarding other meds, vns is actually an adjunct treatment and only approved for use in conjunction with meds. Theoretically vns should increase the impact of the drugs.

    – Natasha

  3. Natasha,
    Thanks for that info. I am beginning to wonder if the doctors can really be trusted. Afraid they are in-the-dark as to what to do. Now with all the negative info coming out about the psychiatric drugs, I am relying on large doses of fish oil and vitamins, and seem to feel better than I did on any antidepressant with zero side effects. I am so sorry for your pain. Hopefully, you will find some relief soon.

    Leah

  4. Hi Leah,

    I think when you choose the right doctor they can be as trusted as anyone else. In the defense of this particular one, I did hear more of what I wanted to hear – hope.

    But you have to understand, for people in my position, there is nothing _but_ long shots. This guy wasn’t offering anything better or worse than anyone else.

    – Natasha

  5. I applaud you, on your efferts & pains that you have & had to endour for better outcomes on the medical to go with the hope given or your faith. You should get a medal of some sort like a soldier gets for being tortured almost.

  6. i was just scanning around for negatives about the VNS, and the sites only said “minimal discomfort”.
    i have one for epilepsy (might also be helping the depressiong that comes along with it), and it goes on for 30 seconds every 5mins,
    i’ve had it for 7 years now and the batteries are due to be replaced. doc would just leave in there, turned off for a while, and if it shows no difference without it, want to leave it there, i dont like when it turns on, sometimes i lower my chin to help relax it. i tollerate it but dont like it. the thing in my chest is also uncomfortably when lieing on my side trying to sleep, the thing flops around inside and stretched
    anyways… just felt like mentioning it, now i am just waiting for the batteries to run out.

    thanks, miki

  7. Hi Miki,

    Yeah, that’s what I found too. “Mild discomfort” was obviously written by people who had never had one implanted.

    I hear that for epilepsy it only reduces seizures by a small percentage, statistically. Something like 15%. That’s an unfortunately small number but I’m sure for some completely worth it.

    I don’t feel the leads tug too often, just the strangulation and inability to talk. That’s enough, really.

    – Natasha

  8. I’ve had the vns for 5years now, of course it has affected my voice. But, also I have been diagnosed with severe sleep apnea. Could this be a complication of the vns? Also chest wall discomfort, increasingly difficult to swallow meds. Extreme body temps. for instance breaking into a sweat and feeling hot. I feel very weak when this happens. It is becoming unbearable and also feel very cold when there is no reason for it. Sometimes while eating the hot spells and sweats will occur. I have night sweats also. Very low energy. The smallest effort leaves me very tired. I am trying to find if others have these issues or where I can find a comprehensive report about complications and or patient complaints. Can anyone help with this or had similar experiences?

  9. Apparently, you should have done a little bit more research on your neurologist. If you had ten years of seizures with no hope with mess., you would be desperate for anything to help. I did the research. With a great plastic surgeon, I have a 3 inch scar that can’t be seen and a small bulge where the implant is. Mine goes off every two minutes. I would never want to go back to the way I was; never knowing when a seizure was going to occur. It hurts from time to time, but I am so happy I have it and the key is do the research on the doctor who is pushing it and the surgeon performing it.
    Good Luck

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