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.)
You can find Natasha Tracy on Facebook or @Natasha_Tracy on Twitter.
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
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
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
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
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.
Hmmm, yes, a medal. I’ll look into that.
- Natasha
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
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
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?
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
I had a VNS put in 7 days ago. My neck still hurts and iam have some difficulty swalling. Is this going to last folr ever?
Hi Vicki,
No, it will not last forever. In my experience, it lasts longer than they say it will, but you will get better and adjust to having this new item in your body.
That being said, if you are at all concerned I recommend contacting your surgeon (or sometimes a surgical nurse can help you).
- Natasha
I had my vns implanted 9 months ago. It is set to go on every 3 minutes for 30 seconds. I get chest wall pain, choking feeling, upper back and neck pain, trouble breathing, and still some seizures. I am still on two seizure medications. My doctor told me it came with mild discomfort. Like many of you have found, it isn’t so mild. I wish it would work better. I am still hoping to reduce some of my medications. It does limit me by not allowing me to do many of the physical activities I use to do. I cannot breathe, even getting up a flight of stairs is hard. Still hoping for improvement.
Hi Michelle,
I‘m sorry to hear you are having such troubles with your VNS. Not everyone experiences that but I certainly know what it‘s like.
I just wanted to encourage you to look at the settings of the VNS. I‘m a little rusty now but if memory serves there are three settings that control the strength and a change in any of them may affect the side effects you‘re feeling. You may want to look into that, if you haven‘t already because it sounds like it might be hard to live like that long-term.
You could also consider a slower increase in dosage. (In other words, go back down to something that is more bearable for you and try this dosage at a later time once your body is more used to it.)
Not being able to breathe when you walk up a flight of stairs doesn‘t seem to be very reasonable.
Good luck.
- Natasha Tracy
wow. i’m glad i had a really good neurologist and neurosurgeon. They didn’t guarantee it would work but because of how bad i am suggested it along with my other meds. My scar barely shows, my surgeon did a good job and he told me to put vitamin E oil on it right after the surgery until it looked the best it could. (it helped ). My doctor slowly raised the level. of course right after the surgery it drived me nuts like i was choking and my voice would be hoarse but the doctor got that adjusted. It helps me a little bit, but i didn’t get my hopes up before the surgery because I knew that it didn’t work for some people. But I get some help with it especially when I need to use the magnet. I know it can cause apnea with some people. Good luck and it sounds like if it is bothering you that much maybe you should get it taken out when the battery runs out. Did they give you a sleep apnea test after it was put in? They gave me one. of course my neurologist is also the head of the sleep disorder clinic as well as the epilepsy dept. I had one done before and afterwards to check for apnea. They don’t like putting one in if you have apnea unless they think the risks outweigh the benefits. Sorry to hear about your situation.
To Judy:
I have a problem with getting really cold then having a headache afterwards. I know if you have a problem with your vagus nerve you can get cold and even faint sometimes so I am going to ask my neurologist when I see her if my vagus nerve implant could be causing this. My other doctor has no idea why I feel this way and has done blood work and tests to see if he can find a problem and he said my blood pressure is fine. but i was wondering if it could cause me to get cold and a headache when it goes on and off by interfering with the vagus nerve. any one know?
Hi Heidi,
Now my scar barely shows too. It takes a long time but these things to heal. Yeah, I would just get the thing shut off because of how it doesn’t help but there’s no one around here that has VNS equipment (I’ve moved since I had it done).
- Natasha
Hi Heidi,
I don’t see any reason why vagus nerve stimulation would cause a headache, but I’m far from a neurologist.
You can see the vagus nerve effects here: http://en.wikipedia.org/wiki/Vagus_nerve
- Natasha