Epilepsy Talk

Vagus Nerve Stimulation…Is it for YOU? | March 13, 2011

Having a Vagus Nerve Stimulator implanted can be a tough decision.  Is it right for you? Will it work? What are the side effects and consequences?

I did some research and got the low-down on what it is, how it works and some interesting statistics.  (If you are already acquainted with the VNS and are on the fence, you might want to just skip down to risks and benefits sections.)

How it works

Vagus Nerve Stimulation (VNS) has been used to treat more than 30,000 epilepsy patients worldwide. It’s designed to prevent or interrupt seizures or electrical disturbances in the brain for people with hard to control seizures. Used in conjunction with anti-seizure medications, the VNS uses electrical pulses that are delivered to the vagus nerve in the neck and travel up into the brain.

The good news is that the vagus nerve has very few pain fibers, so it’s an excellent pathway to deliver signals to the brain without the need for direct brain stimulation.

It’s sometimes referred to as a “pacemaker for the brain,” because it’s part of the autonomic nervous system, which controls functions of the body that are not under voluntary control, such as the heart rate.

What is the surgery like?

The surgeon first makes an incision along the outer side of the chest on the left side, and the device is implanted under the skin. Then a second incision is made horizontally in the lower neck, along a crease of skin, and the wire from the stimulator is wound around the vagus nerve in the left side of the neck. The brain itself is not involved in the surgery.

The device (also called an implant) is a flat, round battery, about the size of a silver dollar, about an inch and a half across — and half an inch thick.

The procedure usually lasts about 50 to 90 minutes while you are under general anesthesia. Sometimes a hospital stay of one night is required. Some surgeons have performed the procedure with local anesthesia and the patient has been discharged the same day.

The VNS device is usually set at a low frequency, then progressively raised over several weeks, until the perfect setting is achieved individually for you. Initially, the electrical stimulation is set for 30 seconds every five minutes. Your doctor will then adjust the timing based on your tolerance and seizure response on follow-up visits.

Meanwhile, you also have some control over the VNS. You’ll receive a magnet that activates the device. When you “swipe” over the device with the magnet, the VNS turns “on” and delivers a stimulus. This actually creates an aura to warn you of an oncoming seizure…

The Vagus Nerve Stimulation doesn’t guarantee that you will be seizure free. But it’s scientifically proven to reduce the frequency and length of your seizures. If you do have a seizure, additional current can be given via a magnet, in the area of the vagus nerve and you will often snap out of the seizure within seconds.

An added bonus can be the improvement of mood swings and memory. And some people can eventually discontinue seizure medications. Doctors are also using the VNS surgery to help some people with depression.

The Vagus Nerve Stimulator is approved by the FDA for use in those with refractory partial epilepsy, those with refractory depression and in people with primary generalized epilepsy, Lennox-Gastaut syndrome, Landau-Kleffner syndrome, and other seizure disorders.

Risks and side-effects

The risks of VNS implantation are low and mostly include the minor surgical risks of bleeding or infection (about 1-2%). At first, you may notice a tingling in your neck during the 30 or so seconds that the stimulator is “on.” In addition, when the Vagus Nerve is stimulated, about one third of people experience some degree of hoarseness which you can reverse by reducing the amount of stimulation. Even without any change in the level of stimulation, the hoarseness and any changes in voice quality tend to diminish and resolve themselves over several weeks or months. Rare side effects include change in swallowing, coughing or shortness of breath.

One thing you need to know after having the device installed: you should contact your doctor before having any new medical treatment, like X-rays, dental work or any type of surgery.  (Who knows what airport screening machines will do!!!)

Benefits

Studies have shown that about:

1/3 of people have up to a 50% reduction in seizure frequency…

1/2 had a 75% reduction in hospital admission days…

1/3 have had no worthwhile benefit…

Case Study

13-year old female experienced intractable seizures, developmental delay and multiple seizure types. The seizures were both nocturnal and included drop attacks and daily absence seizures.

An MRI of the brain showed shrinkage of the left temporal lobe. A positron emission tomography (PET) scan did not show focal cortical abnormalities. But she had failed multiple trials of anticonvulsants because of allergic reactions or lack of efficacy.

Vagus Nerve Stimulation was recommended and the device was implanted without any complications.

One month after her VNS implant, she continued her anti-epileptic medications but was much brighter and interactive. Six months later, she had over a 90% reduction in the frequency and intensity of her seizures, with great improvement in the quality of her life.

As one person says: “I had a VNS implant in April 2010.  My seizures are 80% improved at this point, no more clusters of grand mal seizures and hitting my head on the floor.  Now I just have small seizures (usually absence) and recover very quickly, instead of sleeping for hours afterward.  The VNS works for some people, not all, I think it’s like a 60% chance of success.  I would say it depends if you’re willing to take the risk that it may not be effective for you.  It does take time to adjust and to see seizure control improve.”

Other articles of interest:

A Vagus Nerve Survival Guide to Combat Fight-or-Flight Urges

https://www.psychologytoday.com/blog/the-athletes-way/201705/vagus-nerve-survival-guide-combat-fight-or-flight-urges

TNS vs. VNS – NO SURGERY! 

https://epilepsytalk.com/2013/04/01/tns-vs-vns-no-surgery/

The Gamma Knife — Non Invasive Surgery

https://epilepsytalk.com/2012/09/12/the-gamma-knife-non-invasive-surgery/

Laser Surgery — New Breakthrough Epilepsy Treatment! 

https://epilepsytalk.com/2011/07/19/breakthrough-surgery-for-those-with-epilepsy/

Responsive Neurostimulation (RNS) Shown to Reduce “Untreatable” Seizures

https://epilepsytalk.com/2013/05/05/responsive-neurostimulation-rns-shown-to-reduce-untreatable-seizures-3/

Trigeminal Nerve Stimulation — A Breakthrough Technology Reducing Seizures by Up to 66%   

https://epilepsytalk.com/2013/03/24/trigeminal-nerve-stimulation-a-breakthrough-technology-reducing-seizures-by-up-to-66/

To subscribe to Epilepsy Talk and get the latest articles, simply go to the bottom box of the right column, enter your email address and click on “Follow”.

Resources:

http://my.epilepsy.com/epilepsy/vns

http://www.med.nyu.edu/cec/treatment/vns/

http://www.cpmc.org/images/epilepsy/vNS.pdf

http://www.vnstherapy.com/epilepsy/hcp/forsurgeons/default.aspx

http://www.vnstherapy.com/Epilepsy/hcp/forsurgeons/implantprocedure.aspx

http://www.wisegeek.com/contest/what-is-vagus-nerve-stimulation-or-vns.htm


42 Comments »

  1. Hello Phylis! Thank-you for all the information. Currently the vagus nerve stimulator that i have implanted is malfunctioning. Have been sick for awhile and we finally found the source. The lead is reading ‘high impeadence’and there is scar tissue between the vagus nerve and the lead. Possible micro break. Will be going to U OF M soon to see the 3rd neurosurgeon. Cyberonics is willing to replace the device with there latest model they say,although having a surgeon do it is another story. They need to be paid.They need to be paid to help me even if i don’t want the new model put in. Insurance is claiming the device malfunctioning has nothing to do with the car accident. What a mess.Its in my body and i’m in the middle. Medically damage has occurred as a result. The first surgeon said it was to high risk and another would have to take a look at me. The next surgeon said he won’t help with out insurance confirmation.The reversal is not common and not easy to have,as the device is meant to stay put once installed.If I understood this possibility before,my decision would have been different.They say less than 1% of patients this happens with.If your in this percent,it is very real and extremely difficult. In a hard time right now. Lots of prayer and remembering all the other positives around me. Enjoy your information.Thank-you for all you give to us all.

    Like

    Comment by cr — March 13, 2011 @ 6:40 PM

  2. First of all, WHAT car accident? If it happened AFTER the VNS was installed, it could have an impact on the VNS’s success.

    I researched this and all I found was that the VNS leads in the neck could occasionally break. The Patient’s Manual says that there have been very rare instances in which the Pulse Generator or Lead has moved or “come through the skin.”
    http://www.georgeaugustkoch.com/Writings/EpilepsyVNS.htm

    But, quite honestly, that’s all I found. 😦

    As for the money, I sincerely feel that Cyberonics should pay full boat..for the surgeon..for the malfunctioning…and medical damage.

    Like

    Comment by Phylis Feiner Johnson — March 13, 2011 @ 7:22 PM

  3. Phylis,
    I am curious if you have a VNS and if so why not. I am considering one for my adult daughter and have done extensive reading on all the technical and community web sites. I find this to be a most difficult decision and wonder how you personally process the decision. Would you be kind enough to share.

    Like

    Comment by Kathy Hubbell — March 14, 2011 @ 1:48 AM

  4. Hi Kathy,

    No, I do NOT have a VNS because my epilepsy is well controlled. Basically, I’ve done a lot of research (see above) and since I’m on 5 five forums, I’ve read a lot.

    But quite honestly, I agree. It IS a tough decision to make.

    Are her meds working? Have you tried the various anti-epilepsy diets?

    https://epilepsytalk.com/2009/10/04/eating-well-is-the-best-revenge/

    Have you discussed this with your neuro and/or a neurosurgeon?

    I think you’re very smart, making an informed decision. But, unfortunately, I can’t help you. I’m sorry. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — March 14, 2011 @ 1:28 PM

  5. Thanks to a wonderful woman (smart, too!)at Epilepsy.com, I found a VNS bulletin board:

    http://www.vnsmessageboard.com/index.php/board,5.0.html

    I hope this helps rather than confuses you…

    Like

    Comment by Phylis Feiner Johnson — March 14, 2011 @ 2:53 PM

  6. Thx for putting more info on the VNS. I made my own decision, and for me it has been a great addition to my treatment. It has decreased the severity of some of the seizures, and the numbers of other types. The true unexpected benefit was the element of depression. If only for depression the VNS has been a major improvement in my status. I did not believe that i was depressed until after the VNS was placed. Two or three days after the activation, the unseen haze was lifting, and my attitude became more hopeful. The biggest issue before the decision was making sure what my own expectations were. I did the reading, understood the risks and questioned the docs. My expectations were reasonable, and have been exceeded. the fine tuning of the VNS and meds have made a great difference in my life.

    Like

    Comment by Rikk Smith — March 16, 2011 @ 4:50 AM

  7. All great news: you did your homework and got a “two-fer!”

    Glad the VNS is doing double duty. You know some docs insert it just for severe depression?

    Like

    Comment by Phylis Feiner Johnson — March 16, 2011 @ 2:25 PM

  8. Ok I got the VNS implant in 2001 and it doesn’t work at all! My brother and I were both implanted with it and his malfunctioned but didn’t work anyway and mine just didn’t work at all as far as reducing or totally controlling my seizures. We were implanted when they were trying to help people who don’t have severe seizure’s I am sorry I did get the implant but having another surgery to remove it is not in my future.

    Like

    Comment by Laura Brunner — March 21, 2011 @ 6:42 PM

  9. Hi Laura,

    I’m real sorry to hear about your combined VNS failures. Supposedly, the VNS was in its “infancy” then…and has reportedly improved. Not that it does YOU any good. 😦

    Would it be worth it to contact Cyberonics?

    Like

    Comment by Phylis Feiner Johnson — March 21, 2011 @ 7:38 PM

    • I’d probably have a VNS, but a Cyberonics rep scared me away by calling my house repeatedly. She kept bothering and pushing me about when I was going to get it put in. Thankfully, I got a second opinion, was a candidate for surgery and I’ve been seizure free since Oct 2009.
      I do have a friend in Tx who is satisfied with his VNS. He still has seizures, but less frequently.
      We’re all different and I wish anyone with a VNS only the best.
      God Bless

      Liked by 1 person

      Comment by Charlie — April 3, 2011 @ 4:45 PM

  10. Hi Charlie,

    For some the VNS works. Others curse it’s existence and wish it was never invented.

    There’s a lady on this thread who wants to have it removed but can’t afford the surgery. (At least,I think it’s on this thread.)

    It certainly sounds like you were getting the hard sell and I would have been very suspicious.

    But I’ve heard (not seen) that the second generation is supposed to work better…???

    Like

    Comment by Phylis Feiner Johnson — April 4, 2011 @ 3:06 PM

  11. My daughter is getting her VNS out this week. She was hit in the chest and it is now malfunctioning big time. Over heating, buzzing and she says it hurts. We actually use the magnet to get it from heating up. The VNS hasn’t worked for her. We have actually increased her meds since implanted in 2008. Too many side effects for her as well.

    Like

    Comment by Linda — June 5, 2011 @ 6:30 PM

    • OUCH! Being hit in the chest AND having a faulty VNS! Has it been removed? Have her meds been changed? Has her condition improved?

      Let us know how she’s doing, please.

      Like

      Comment by Phylis Feiner Johnson — June 6, 2011 @ 7:35 PM

    • I was one of the first couple hundred folks that had the devise implanted. I did notice a reduction in seizure activity but the device was brutal on my throat, in fact so painful I had to have the settings reduced to a point it was no longer effective. Eventually I had it turned off but to my surprise on several occasion while participating in sports or a friend smacked my on the chest messing around the device activated at a very high setting and every 30 seconds it would light me up like a Roman candle. After one particular incident while out of town working with no magnet on hand I took a hit from a football center mass on the devise and it lite me up big time. Funny thing as we raced to a store to get a magnet I ended up pulling the light bar off the roof of the vehicle and putting it on my chest (large magnets. The whole time Cyberonics denied this was able to happen and had “never had a case of it”. I had the devise removed and kept it, lucky my insurance covered it procedure entirely.

      Like

      Comment by LH — January 27, 2013 @ 12:13 PM

      • Oh my gosh ! I am going to have to print your response and show it to a person in my support group who is considering it. We do have a person who is having success with it though. It is always good to have 2 points of view before a decision. Somewhere above this post in the comments I related my experience with
        Cyberonics. The choice I made was surgery, thankfully I’m seizure free for 3 1/2 years so far.
        Good luck

        Like

        Comment by Charlie — January 27, 2013 @ 4:04 PM

  12. […] https://epilepsytalk.com/2011/03/13/vagus-nerve-stimulation%E2%80%A6is-it-for-you/ Share this:TwitterFacebookLinkedInLike this:LikeBe the first to like this. […]

    Like

    Pingback by Vagus Nerve Stimulation…Is it for YOU? « epilepsyconnection — July 11, 2012 @ 12:01 PM

  13. Wonderful article! This is the type of info that
    should be shared across the internet. Disgrace on the search engines for now not
    positioning this put up upper! Come on over and talk over
    with my site . Thank you =)

    Like

    Comment by arjun kanuri — May 15, 2013 @ 9:34 PM

  14. LOL! Thanks for the compliment, and yes, sometimes the algorythms of the search engines work in strange and mysterious ways.

    Anything else coming up on your website after Coral Gables?

    Like

    Comment by Phylis Feiner Johnson — May 16, 2013 @ 8:41 AM

  15. Thanks in favor of sharing such a nice thought, paragraph is fastidious, thats why i have read it entirely

    Like

    Comment by Jacklyn — October 9, 2013 @ 9:35 AM

  16. Jacklyn,

    I’m happy any time I can help.

    Like

    Comment by Phylis Feiner Johnson — October 9, 2013 @ 10:07 AM

  17. Good information Phylis you always keep us well informed

    Like

    Comment by jennyme3062015 — March 6, 2016 @ 4:14 PM

  18. Jenny, thanks for the compliment!

    Like

    Comment by Phylis Feiner Johnson — March 6, 2016 @ 5:23 PM

  19. how much it cost the surgery?

    Like

    Comment by Karla — March 13, 2016 @ 3:42 PM

  20. It could cost around $40,000 if you don’t have insurance.

    Like

    Comment by Phylis Feiner Johnson — March 13, 2016 @ 7:22 PM

  21. Phyllis, I took part in the test studies when they were first started. I played “lab rat”, having nothing but seizures to loose.
    I have gone from an average of 8 a day to maybe three a month.
    They happen mainly that “time of the month”, if I have stress going on or no sleep.
    I can’t tell people enough how much the stimulator helps. It is worth looking into. Everyone needs different levels of oxygen and it does take time to get the correct level.
    Tell people not to give up, it doesn’t work overnight and doesn’t cure the seizures.
    I believe the stimulator is worth looking into. Good luck and best wishes to all who are looking into getting one!!

    Like

    Comment by Nicole Koloski — March 18, 2016 @ 7:11 PM

    • That’s great news Nicole. And very encouraging.

      It you are having seizures around the time of your period, it might be “Catamenial Epilepsy”.

      Catamenial Epilepsy — or hormone sensitive seizures — are when increased seizures are related to your menstrual cycle.

      The causes of catamenial epilepsy are not totally understood.

      It could be an imbalance between your two female sex hormones, estrogen and progesterone, or you may not be producing enough progesterone during the second half of your menstrual cycle.

      It is also possible that the amount of antiepileptic drug (AED) circulating in your bloodstream may decrease before menstruation.

      This article explains it in full:

      Catamenial Epilepsy – Do You Have It?

      https://epilepsytalk.com/2011/08/07/catamenial-epilepsy-%E2%80%93-do-you-have-it/

      See if it relates to you.

      Like

      Comment by Phylis Feiner Johnson — March 19, 2016 @ 9:41 AM

  22. Phyllls I was the worlds first implant in 1988 by Doctor J. Kiffin Penry. It has stopped my seizures since 1990. But once your battery dies seizures will return. I was in Dr. Penry’s drug studies and medications would not work for me. I am very thankful for this device.

    Like

    Comment by Toney Kincaid — March 18, 2016 @ 8:10 PM

  23. A pace maker for the brian,I should would have needed one when I was taken 14 different pills at 27,then I would had so much trouble with my seizures.

    Like

    Comment by michele metzger — March 18, 2016 @ 9:46 PM

  24. Maybe so. But wouldn’t they have recommended it?

    Like

    Comment by Phylis Feiner Johnson — March 19, 2016 @ 9:15 AM

  25. I have a VNS, take 3 medications, intractable seizures due to a traumatic brain injury and spine issues, so I wear a felbenate patch….for severe pain. I have 7 lesions on my brain; probably more now from all the falls due to drop seizures and grand mal seizures, and I now suffer from chronic anemia among other things…I am thinking about trying the marijuana program. Is this dangerous for me?
    April Zimmermann
    zimmyruns@yahoo.com

    Like

    Comment by April S. Zimmermann — June 12, 2016 @ 4:03 PM

  26. I really don’t know, but there are lots of sights on Faceboook (trying looking up Cannabis Unlimited: Medicine and More) where you can talk to people with actual experience, plus get some real facts.

    Like

    Comment by Phylis Feiner Johnson — June 13, 2016 @ 8:42 AM

  27. Have you research VNS and using Charlotte’s web. Is it a good idea to use both treatments together? It’s hard to research myself because some of my medications leave me in a cloudy state and memory issues.

    Lisa

    Like

    Comment by Lisa Pulley — September 23, 2016 @ 4:33 PM

  28. Gee Lisa, what a good question. I have no idea. But it’s a great question to post on Facebook which talks about Charlotte’s Web a lot.

    Especially Mike Robinson, an expert and advocate in the marijuana field.

    Like

    Comment by Phylis Feiner Johnson — September 24, 2016 @ 8:57 AM

  29. I have a vns implant but my battery is dead, has been now for a few years but I am worried it will hurt me to leave it inside me or should I have it removed. Have new doctor and he wants nothing to do with it, he put me on new meds and my seizures are pretty much controlled now. Any thoughts or knowledge on this would be greatly appreciated. Thank you.

    Like

    Comment by Tracy Harp — October 17, 2016 @ 7:24 PM

  30. First of all, I would seek a second opinion, because there’s an improved version of the VNS battery called Aspire.

    It offers the ability to provide automatic stimulation in response to increased heart rate, in addition to its other stimulation timing.

    AspireSR® expands the use of VNS Therapy to a new responsive type of stimulation.

    VNS…Exciting News!

    https://epilepsytalk.com/2015/06/20/vns-exciting-news-2/

    See what you think and that may influence what you want to do.

    Like

    Comment by Phylis Feiner Johnson — October 18, 2016 @ 9:16 AM

  31. Hello Phylis I have a question about the VNS, I had breast cancer where they had to remove the left breast & also left Lympnodes out in 2006 now is it still safe to have this done in the left side? what do you think?

    Like

    Comment by Sandie — January 25, 2017 @ 5:46 PM

  32. Sandie, I found an article about inserting the VNS on the RIGHT side…

    “Vagus nerve stimulation (VNS) was introduced as a novel method for the treatment of patients with medically and/or surgically refractory epilepsy.

    VNS typically involves placement of the electrode on the left vagus nerve.

    However, there are some patients who cannot be implanted on this side because of complications related to the surgical procedure or side effects or infections forcing the left side VNS (L-VNS) explant.

    Because right side VNS (R-VNS) implants have shown similar effectiveness compared to L-VNS in reducing the frequency of seizures in animal models, treatment with R-VNS should be considered in patients who may not tolerate L-VNS.”

    Treatment of refractory epilepsy in adult patients with right-sided vagus nerve stimulation

    https://www.ncbi.nlm.nih.gov/pubmed/20488666

    Like

    Comment by Phylis Feiner Johnson — January 25, 2017 @ 6:36 PM

  33. I had a VNS put in on St. Patrick’s Day in 2008. Since I have had my implant I havent had any seizures. They have also been able to cut my medications in half.
    Vickie Roy
    Berlin, NH

    Like

    Comment by Vickie Roy — March 17, 2017 @ 10:37 PM

  34. I was one of the studies to let you know I feel mine goes off more than 5 mins. But I can say this the VNS has changed my life.

    Like

    Comment by Danielle — May 8, 2017 @ 2:23 PM


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

    View Full Profile →

    Enter your email address to follow this blog and receive notifications of new posts by email.

    Join 2,298 other followers

    Follow Epilepsy Talk on WordPress.com
%d bloggers like this: