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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

Natasha Tracy is a renowned speaker, award-winning advocate and author of Lost Marbles: Insights into My Life with Depression & Bipolar.

Find Natasha Tracy on her blog, Bipolar Burble, Twitter, Google+ and Facebook.

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

  1. I have a 16yrs old daughter she got the vns when she was 3yrs old they never told me i could not remove it and said that it will stop her seizures well she still having seizures and i had it turn off because i didn’t see the difference in her seizures and it had her coughing all the time and i always wounder did it hurt her because she can’t talk but it seem like every one post it hurts my heart is heavy with the thought of she hurting and can’t tell me doctors will sell you a dream but never the truth i really want to know is there anything the doctors do when yall tell them it hurts.

  2. I’ll bee 55 in June of 2017. I had Epilepsy since
    I was 4 years old. I’ve like many people been on many medications. The thing I worry the most is how hard is it to swallow pills? How well dose it work on treamors? I’m wondering since I have those daily. Can anyone help me PLEASE! I’ll be getting my VNS the 1st week of June of 2017.

  3. I have had vns for years now. After the surgery you are sore for a while but the neck scar is barely visible in my case. The chest one is obvious but not dreadful. I used to be able to time an egg by the device. But I hardly notice it anymore. Apart from when its triggered with the magnet to double the voltage temporarily. Feels weird kinda tight like some electric worm or something when triggered. Makes you cough. Doesnt work for everyone. Some people it doesn’t help at all but with others it helps alot, personally its simply reduced the severity of my seizures when coupled with my meds. Hope this helps 🙂

  4. I had the vns implanted in 2001 had pain so bad in neck and chest had it turned off then in 2003 my box came out of its place in my chest and it pulled on my wire a bit so i went and had surgery right as free that to remove the box wire still in neck as they cant be removed since then my neck hurts all the time if i move a certain way if i yawn to much or to big wire gets stuck and i have to wait for it to release so i can close my mouth. I cant do alot of dancing or exercise as my neck will hurt so bad i have to lay down. If i sit up straight for long periods my neck hurts so bad i have to lay down or put a neck brace on for it to relax cause it gets stiff and throbbing pain. After 15 years of complaining to doctors a nice doctor who listened and checked everything found that now i have deterioration on the opposite side of my neck after having many x-rays from so many providers and i went to physical therapy to try to get relief from The pain and they say i dont know what you should do about that. It has been very annoying and irritating for the last 15yrs and it didnt take away my seizures eaither. As of last month i lost my great doctor and trying to find a good one who listens again but so far nothing, as they look at me like im crazy for the pain i say i have.

  5. Brian I am so sorry you have been through so much with the VNS, and I’m hoping my brother doesn’t go through any of this that you are talking about. He is non-verbal and has Autism and other disabilities and we thought we were doing the right thing for him as he has about 8 or 9 seizures a month and he is 59 years old and they are slowly killing him. This was a last resort thing for him. We had it put in last month and he has had 2 adjustments. Our question is, the pressure that builds up prior to a seizure, what happens to that when the VNS stops the seizure. Apparently my brother is having horrendous headaches and we don’t know if it is from the VNS or what. Nothing we give him helps this headache. I’m calling his doctor today to see what he thinks. I thought I’d done all the research but apparently I hadn’t. I spent weeks of all day and all nighters doing the research and was assured that even though my brother is non-verbal, the pain would be very little. I doubt that now especially after the week he is having. He’s been having “episodes” and it seems to be brought on by head pain. Since he can’t tell us, we don’t know. We’ve had very little sleep and neither has he. I wish I had someone who could tell me more. I do have someone I talk to but his experience is a lot different and I know everyone does have different experiences. Still, this man has helped us above and beyond and has gone the extra mile and then some to help us with the questions we have. I’m very grateful to him and don’t know what we’d do without his advice and help, but I would like to hear different opinions. On top of everything else, my brother got pneumonia after having this VNS put in and was hospitalized for several days. Hospitals are nasty places and they won’t clean them up for some reason. They won’t make sure the germs are all killed.

    Brian, you seem like a smart guy. I am assuming that in your quest looking for an attorney, even though you said you had very little money, I’m sure it’s probably too much for a legal aid attorney. My advice is to do the legal case yourself. I can see you are good at research and if it’s at all possible, try it yourself. See if your state will allow you to file your own case. I’ve done it three times now, all on my own. The first one was a Guardianship case. I won it, no lawyer. The second was a probate case to get someone removed as Executor of an estate, no easy task, really nearly impossible. I did it on my own, and I got the person removed. I’m now suing this person and her lawyer. I’m doing it on my own. As long as you have evidence, receipts, etc. – undisputed evidence, it’s hard for the person you are suing to win. A lawyer will only take your money and delay hearings so he can make more money. That’s how the system works and when they feel enough guilt because they’ve taken all your money, then they will “settle” the case for you and you will lose even more. You are great at research. You have nothing to lose by inquiring at your local court house if you can do it. It doesn’t cost much. Try it. You will be surprised to find out how much you can do on your own. Really and truly the best advice I can give you or anyone is to pray first. Pray all day and all night. That has what has gotten us this far with my brother. God truly has been good to us and we’d never made it this far without prayer and a few miracles thrown in. It would have been a lot worse on us all the way around if we hadn’t prayed and had others to pray for us as well. We continue to pray and continue to ask for prayer. God is good to us, He really is.

  6. I’m a 52 yr. old male, have been having full Gran mall seizures since age 18, have tried every medication in all sorts of mixtures, also Acupuncture, Acupressure, diet, exercise, etc. In Dec. of 2011 we gave everything up, and went for the VNS! After we turned it on in Feb. 2012 we have tried most adjustments for seizures, but never showed any loss of the seizures in amount or strength to this day (Jan. 2016). Well here’s the great news, just over 2 yrs. ago I took-on Chronic Diarrhea in the most constant insane way! I have been working very hard with doctors all over the state, doing 2 full colonoscopy’s, 1 endoscopy, 100’s of blood/urine/stool tests, 1 cat-scan, diet changes, etc. ALL say I’m in fine health, and the doctors are very lost with my case. I also gained 55 lbs. in the last year, and most think this is fluid retention. Of course my neurologists say this can’t be caused by the VNS, but my own research is finding TONS of side effects caused by the VNS. 1 example is the FDA site saying they have over 151 cases of the VNS causing problems with the guts & Diarrhea, where some dropped the problems with turning the VNS fully off, but a large amount of them had to remove it! Even the Epilepsy foundation site talks about the “Tugging Effect” the VNS “Spiraled wire” can cause all by itself! Please note that just in 2015 I went to 122 full doctors appointments, have been so down and depressed that I can’t get drive or energy to do much, and in Dec. 2015 I watched my only home of 18 yrs. get auctioned off in Maui, HI.! With Epilepsy on my med. reports, and little cash I never found a good lawyer out here, this BofA loan has shown to be fraud, many legal pros say this looks like a great case to win this $1mil. home back, and if you can help win this I will give you HALF of this Oceanfront beauty that has 2 homes on it’s 12k’ lot! Note; I moved here in 96′, org. from CA., never had kids due to all the meds, have no family to fall back on, have great records, and I’m willing to bend in any way to beat these banks, and get my health back with a VNS removal to! Brian Steffen

  7. i had the implant a month ago it still hurts but i needed it my sezuires were bad well nothing like trying something new i hope this works for me

  8. I have now had my vns for a year and two months. Granted the scars I have are much larger than I was told and the effects on my voice are way worse than I thought, I loved to sing at church & can no longer do so due to it messing my voice up. But my main question is has anyone experienced pain where the implant is? Also it is now got my whole left arm hurting all the time! But like where the vns in my chest is feels bruised.. I’m wondering if I need to contact my doctor?

  9. Im trying to decide whether to have the vns. Im going off the idea more and more. I’ve had epilepsy for 31 years and its not easy to control. But I don’t think I want something like that in my body. It seems like a load of hassle to me and very uncomfortable. Its probably best to have something like that when your older and your kids have left home. It might scare my 5 year old.

  10. I have had a vns for 10yrs now. I’ve had it replaced once. My old neurologist left state so I found another one and thought I was in good hands but wasn’t. After four years with her I found another one. The first visit with him I let him know I was going on 2yrs of my implant not being checked. He checked it that day and told me it was still on a kids level. I am now up to being on for 30 seconds off for 5 min. We are gradually increasing the stimulation also. I am so scared each week I go back of what it will feel like because of the pain. My implant also flips out when I lay down and I have to push it back in and keep my hand on my chest til I get comfortable. It has helped with me seizures though. 11yrs ago I was on 21 pills a day at 17 now I am on 2. Sometimes I have problems with the area around the vns going num and have to massage it. My voice has started going in/out again as we increase the stimulation. I am sorry about your experience.

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