This page is about vagus nerve stimulation in the UK. If you are looking for information in other countries, please contact your local epilepsy group who may be able to help.
Please note that this information is currently under review. The revised version will be available shortly.
Contents
- Introduction
- About vagus nerve stimulation therapy
- About the operation
- Living with vagus nerve stimulation therapy
- Availability of vagus nerve stimulation
- Support organisation
Our thanks
Epilepsy Action would like to thank Lynn Greenhill, Epilepsy Nurse Specialist and Honorary Lecturer, Birmingham, UK, for reviewing this information.
Introduction
This information explains what vagus nerve stimulation therapy is (commonly known as vagus nerve stimulation or VNS) and how it can help some people with epilepsy.
About vagus nerve stimulation therapy
Vagus nerve stimulation (VNS) therapy uses a small generator that is implanted under the skin below the collar bone. This is connected to a lead with two coils at one end. These coils are wrapped around the vagus nerve at the side of the neck, under the skin, during a small operation.
The generator sends electrical impulses, at intervals, to the vagus nerve and then to the brain. This helps to lessen how often the seizures happen and how severe the seizures are.
How vagus nerve stimulation works
The generator is programmed (during the operation) to send electrical impulses, at intervals throughout the day. The electrical impulses are sent through the lead, to the vagus nerve in the neck and then to the brain. This will help to prevent electrical activity that causes seizures.
If necessary, the generator can be adjusted after the operation, or at an outpatient appointment, by the doctor, or epilepsy nurse specialist.
While in hospital the person will be given a magnet that can also be used to activate the generator to send extra impulses through to the brain. The magnet works by passing it over the implanted generator.
This would be used if the person feels a seizure starting, or during a seizure. This can stop the seizure, shorten the seizure or lessen the severity of the seizure, in some people. The magnet can also be used by a carer, or family members, if they witness a seizure.
Seizure control with vagus nerve stimulation
After the VNS is implanted, it can take from a couple of months to up to two years to notice a difference in seizure control. Reported benefits include fewer seizures, occasionally seizure freedom, shorter seizures, quicker recovery after a seizure, feeling more alert and improved mood.
People who could benefit from vagus nerve stimulation
Vagus nerve stimulation is for people, of all ages, with difficult to control epilepsy. It’s suitable for any type of epileptic seizures. Around 55,000 people worldwide have been implanted with vagus nerve stimulators.
About the operation
What the operation involves
Two small cuts are made, one to implant the generator and another for the lead. This involves:
- an operation that lasts about one to two hours
- a cut in a natural crease on the left side of the neck for the lead
- a cut on the left upper chest near to the armpit for the generator
- a stay in hospital of around one or two days.
The risks of having a vagus nerve stimulation operation
The vagus nerve stimulation (VNS) operation is straightforward and is now commonly done. However, there are risks for anyone who has any type of operation.
The VNS operation is usually done under a general anaesthetic. As with any type of operation, there is a slight risk of reaction to the anaesthetic. There is also a small risk of bleeding and infection with any type of operation. There can be other rare complications and the surgeon would give more information about the risks, before the operation takes place.
There may be some pain after VNS surgery, from the area of the implant. The doctor can prescribe something for this.
Living with vagus nerve stimulation (VNS) therapy
The side-effects
The most common side-effects reported from the vagus nerve stimulation (VNS) implant are:
- temporary hoarseness/change in the voice tone
- sore/tickling throat
- shortness of breath
- coughing
- prickling feeling in the skin.
Anti-epileptic drugs after the implant
Anti-epileptic drugs (AEDs) should be taken as normal, for several months after the operation. The doctor will then give advice on any possible changes to the AEDs.
Replacing the generator
There is a tiny battery in the generator that can last for around six to 11 years. At some point, the battery will need replacing. The higher the frequency and output of the stimulation, the faster the battery will run down. Your doctor or nurse can tell when the battery is running down by reading the VNS therapy device. They will then arrange for a new battery in the generator to be implanted. This involves a small operation, which lasts less than an hour. It doesn’t usually mean an overnight stay in hospital.
Availability of vagus nerve stimulation
In the UK vagus nerve stimulation is available to patients who are referred on the NHS, or privately. Details of implant centres and programming can be found on the Cyberonics website, www.cyberonics.com, or from your family doctor or specialist.
Support organisation
F.A.B.L.E.
305 Glossop Road
Sheffield
S10 2HL
UK
Telephone 0114 2755 335
Freephone Advice Line 0800 521 629
Email fable@btconnect.com
http://www.fable.org.uk/
Conflict of interest declaration
Lynn Greenhill has declared that she has received sponsorship from Cyberonics in the past. She attended the International League Against Epilepsy Congress representing Cyberonics in 2010.
We can provide references and information on the source material we use to write our epilepsy advice and information pages. Please contact our Epilepsy Helpline by email at helpline@epilepsy.org.uk.
This information has been produced under the terms of The Information Standard.
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Updated October 2010To be reviewed November 2012
Comments: read the 14 comments or add yours
Comments
I found this article very informative.My son, who is 27, is going to have this procedure done this coming friday (Sept.2).
how did your son's operation go?
the article is very helpful, i too maybe getting the implant.
i maybe havin the implant but i was wondering if any1 knows if it affects people flying, as i no pace makers do ???
Hi Ross. As far as we know, there’s no reason why you shouldn’t fly if you have a VNS implant.
Advice from FABLE says that: ‘Anti theft devices and metal detectors should not affect the Pulse Generator or be affected by it. As a precaution, however, move through them at a steady pace: do not linger in the area.’
It may be a good idea to follow this advice when you’re going through airport security scanners. It would also be a good idea to carry some proof that you have a VNS, such as a letter from your doctor.
Advice and Information Team
I had this surgery in February of 2007. I have not had any seizures since the surgery. It has totally changed my life.
to Kim, glas to hear that it has changed ur life
my sister has epilepsy and the medicine is not helping her fits.
i am very worried about her and wish it stops.
how severe were ur fits before u took this procedure?
I've had VNS therapy for two years and my seizures have reduced, but I still have them (complex partial/focal). I started off with 30 seconds on and 5 minutes off, 30 seconds on 3 minutes off etc - I'm now switched off for 18 seconds and on for 7 seconds. I've not found this a problem except when it makes your voice sound as if you've had a bad cough. I'd rather have that than endless seizures (used to have about 10 a month) and some seizures used to be really bad - always fall over, confused terribly after, would do purposeless movements and try to re-organise things, although I didn't have any recollection. I'd recommend VNS to anyone who has uncontrolled seizures. I've been through 18 different drugs and none of them controllled me. So hello VNS and cheerio to so many seizures. I still have seizures - about 90 per year, they're now about 60 and some of them are so quick and not so confusing after. Be careful when you go through security in airports - always tell them you have VNS and skip the security instead they'll just you a frisk over instead. Don't ever go through their security system as this can heat up the connection leads and damage them. Bless VNS I don't know what 'd do without it!
Iam thinking and hopefully going to suggest to my specialist if I can have one, last time I saw him he gave me the option of doing a special diet which would cut out all the carbs etc and I could only eat fatty foods. But if I was to waonder of the diet and take a bite say of a biscuit I would be straight back to square one. The other option was to do nothing and stay as I was because I had tried all the meds available. Thats why I would like to try the VNS does anybody know of any side effects and the cost if I had to go private. I have a mixture of Tonic Clonic, Complex Partial Seizures etc..
Hi im due to go into hospital within the next 6-8 weeks to have my VNS how bad does the temporary hoarseness/change in the voice tone and the
sore/tickling throat get?
I have had a VNS for 10 Plus years and it has completely changed my life. I still have to take medication and some of the side effects are a bit unpleasant. I would recommend this treatment to anyone, lets face it you have got nothing to lose. I have even been to university which is something that I did not think that I would ever be well enough to do. It is worth remembering that it does take time for the DRs to find the correct setting on the implant to suit you and this is not very nice. But I have found that the longer my implant has been in, the more controlled my seisures have been. Personnaly I could not go back to the quaility of life I had prior to having the implant, as now I know what it is like not to have seizues everyday of my life. Hope your operation goes well.
I have had a VNS for quiet a long time now approximately 10 plus years. I have found that although I still have some restrictions on my life, taking drugs, still some petimal seizures ect... I can take a bath without somebody waiting for somebody to be at home or go out without somebody. The implant is not perfect and can have some unpleasant side effects, however, compared to what life was like prior to my surgery the operations every few years and side effects are worth it. My life changed dramatically, I even went to university which I did not think that I would ever be healthy enough to do. If your DR recommends a VNS take my advice, and go for it after all you have nothing to lose and it will proberly change your life for the better.
Hi
We think it affects different people in different ways. If you want to ask other people who have had the VNS, you could join our online community, forum4e. There are several thousand members of forum4e, so you have a good chance of people who have had VNS surgery getting back to you.
Kathy
Advice and Information Team
My doctor put in a referral yesterday for me. I've had seizures all my life.....After a referral does anyone know whats next?
and to hear,,..someone say they had a bath!!
Smiles
Dee
Hi Dee
If you contact FABLE they should be able to advise you on what to expect at your appointment. They may also be able to put you in touch with people who have already had the procedure done.
We hope all goes well and you are able to have the VNS done. Hopefully it can help to lessen how often you have seizures and maybe lesson the severity of your seizures. As the VNS doesn’t necessarily fully control someone's seizures, you will still need to be safety conscious if you have a bath.
Regards
Diane
Advice and Information Team