Epilepsy in Young People

Brain surgery and VNS for epilepsy

We spoke to a few young people who'd had brain surgery or Vagal Nerve Stimulation (VNS) and here they talk about their experiences.

Brain surgery

Different types of brain surgery (also called neurosurgery) can help some people with epilepsy. Surgery might be considered if anti-epileptic drugs (AEDs) haven't stopped or significantly reduced the number of seizures and the physical cause for the person's epilepsy is found in only one area of the brain (localised cause).

To see if people are actually eligible for surgery, they have to have various important tests. This can be a long process and involves having EEGs, Video - EEG telemetry, MRIs, memory and psychological tests.

Donna describes the various tests she had to find out if surgery might help her. The type of...

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Age at interview: 28

Sex: Female

Age at diagnosis: 3

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I've got a basic standard programme, surgery for epilepsy frequently asked questions, I was given just the basic leaflet, which is sort of what the procedures are, what you have to have done. Out of these procedures I had them all done, I had the video telemetry done, which is the EEG machine sat in hospital. I had the neuro psychology tests which test your memory, language and the effect epilepsy has on your quality of life and your emotional wellbeing. And I had the Wada test, the side of your brain is anaesthetised for a few minutes, and then they do simple memory and language tests. And then they do the other side. I had that done.

The next step would be to have the inter-cranial, the electrodes, have that done because I presume it's more to the core, you know more focussed to the point. I sat in hospital again for three weeks, waiting for it to happen again, and it did eventually, happened in the last week that I was there, I had some seizures. Then I think it was about six months after that they wrote to me and said that they'd found what they want, they could see where it was coming from, it's very localised. That's when they said that I could have the surgery, then I started having the neuro psycho-pyschology tests. That was like being at school. Ooh, that was awful. Having to sit in a room and it was very educational, you know seeing what I could remember and what I could retain and what I couldn't remember. Faces and that sort of, them sort of tests. Asking me could I put a name to the face, and so that was quite difficult. And after I'd had all the neuro psychology tests done, they said there wasn't enough information from the written side, and that's when they told me I'd have to have the Wada, and that's where they put one side of the brain to sleep. It goes straight through your vein I think, it's a bit gruesome really isn't it. Straight through your vein into your brain, they put one side to sleep for a minute I think, or something like that, or a few seconds, I don't know. Ask me what day of the week is it, and who's the prime minister, only very basic questions, and then they did the other side.

The neuro psychologist said I was one of the best candidates that they've ever had. She said, 'You was very calm, very, very relaxed' and she said the results was very good, very positive. I always remember her saying, she said, 'It shows what a perfect candidate for surgery you are.' So, that was really positive, the Wada test 'cos it just showed that what they was gonna do was gonna be good. It was going to benefit me. She said a lot of people get stressed about it, but I'd got past the point of being stressed, after I had the electrodes, now if you can have that done you can have anything done. 'Cos that was blooming awful. The pain was horrendous afterwards, you know coming out, and it was so uncomfortable, for three weeks having these things in, in the surface of your skull. That was really uncomfortable so I thought well, I've had that done so you know bring it on, I don't mind any more. I did get to that stage through the programme where I thought well now I've had the electrodes done I think I can cope with anything. In fact, I felt less pain after I had had the main surgery that what I did when I had the electrodes. I was in more pain when I come out of the surgery with them in, than what I did when I'd had the main surgery.

Deciding to have surgery

Having any kind of surgery on the brain is a big decision and people may have lots of questions or concerns that they want to discuss before making up their mind.

The people we spoke with said that their doctors suggested the possibility of surgery because they hadn't been helped by any of the AEDs.

Donna's consultant suggested brain surgery because none of the AEDS had controlled her seizures...

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Donna's consultant suggested brain surgery because none of the AEDS had controlled her seizures...

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Age at interview: 28

Sex: Female

Age at diagnosis: 3

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I was under a consultant, you know here, went to the consultant like I did every six months or so. He said I, he said I don't really know what I can do with you anymore Donna. He said, 'I'm a bit stuck' he said, 'We've tried this, we've tried that, we've tried such and such,' he said, 'I think you'd be a good candidate for surgery, and I'm going to pass you onto one of my colleagues.' 'Oh, okay.' So I was a bit shocked really. My daughter was only about six months old, and, as I say, and we just took it from there., went to see another consultant to another hospital where I had the surgery, and obviously he had all my notes and all my background and such like and he told me what it involved and then I met the surgery programme co-ordinator, and she gave me you know one of their leaflets and said what's what, and it just sort of went from there.

To help them decide whether to have surgery, young people had received a lot of information and leaflets from the hospital. The decision also involved their parents and the rest of the family. One woman with a baby daughter said she decided to have the operation partly for her daughter's sake, so that she would have a healthy mum.

People had also been informed about the risks of surgery so that they could make a fully informed decision about whether to go ahead or not. One man said his parents worried more about the risks of surgery than he did.

Before his surgery, Nick wanted to get as much factual information about the operation and risks...

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Age at interview: 21

Sex: Male

Age at diagnosis: 15

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To be honest they [doctors] were never ever like, what the word would be. Well if anything actually they were a little bit blunt perhaps, the professor, with him being a surgical professor, a surgical consultant, perhaps wasn't as used to dealing with people. And he perhaps was a tad blunt for my parents' taste. But for me he was just honest you know. He said, you've got a 3% chance of dying from this every year, you have to get this out. This is the chances of what happens if you go to surgery, we'll do this and we'll do this and then we'll get rid of it, and for me that was what I wanted to hear. Perhaps for my parents it wasn't what they wanted to hear. They thought it was a bit too much information, but I mean, it's never really, as I say, it's always just been sort of I get the facts, and I deal with the facts.

They always gave me loads of information and pamphlets and how about epilepsy, I had an epilepsy nurse sort of, I was assigned to an Epilepsy Nurse I suppose, and she gave out more pamphlets and was always there, 'Here's my number, any time you wanna ask questions.' It was actually quite good because I never asked about alcohol consumption, you know and how I should be careful with drugs, and stuff like that and they were always very, they were very stressed on how I should be limiting my alcohol consumption, not do anything like drug wise. And I suppose fair enough.

You felt you had enough information?

Oh yes definitely. Definitely for me.

And that's what you wanted?

Yes, I wanted to know, when I get the facts then I can deal with them.

People said they'd been 'worried', 'scared' and 'anxious' about having surgery but, once they'd made the decision, they were determined to go through with it. They had very poorly controlled epilepsy, with several seizures per week or even a day, and felt that epilepsy restricted every part of their lives. Surgery seemed the last available option and they wanted to take it. One woman said:

“It was an escape route from the epilepsy. It's like a “Get out of Jail” card isn't it. If that's my only way out, I was gonna grab it with both hands. I'd be stupid not to. You know you'd spend your life thinking, “Well what if?” and I might not have had that chance again.”

Darren decided to have surgery because he 'had to take the chance to get rid of epilepsy'. He was...

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Age at interview: 19

Sex: Male

Age at diagnosis: 11

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I was told that it was very risky. I remember sitting in the room with mum and dad just this, it was the day before I think, I had the surgery. Just been told about it, you know, how they'd like cut a piece of my brain out and like all the risks like getting paralysed on one side, even death or, all these different risks and, you know. I was really scared. But I was, you know, we had to take a chance just get rid of the epilepsy. But they said that there was a good chance that it could work as well, so that did kind of boost my confidence a bit. So yeah I did I was gonna go through with it no matter what. And I did.

Was it a difficult decision?

No I was gonna do it.

Okay, do you remember the surgery, the day before being in hospital, how you felt?

The day before, yeah, I remember walking down the corridor, mum being more scared than I was, then going in, I don't really remember staying in the actual room the day before, I remember the morning before. Like getting ready for the operation and how they had to' and now I was really scared, just before and how they had to give me what's it called? Pre-med yeah? How they had to give me the pre-med, how then I weren't scared, I was really happy then. Then I just remember trying to climb onto another bed, and that's all I remember. Oh yeah and I remember throwing up [laughs] just before and then that's it.

The surgery and staying in hospital

Neurosurgery for epilepsy is performed in specialised hospitals and units in the UK. For most people this meant going into a hospital some distance from home.

People didn't know - and didn't want to know - much about the details of the actual surgery. One man, whose epileptic seizures were caused by an arteriovenous malformation (AVM) in the brain, needed a series of operations to treat it. AVM is a tangle of blood vessels in the brain or elsewhere in the body, where bleeding can cause serious damage. AVMs are very rare. He said his doctor had been really understanding of other factors in his life and scheduled the operation after his GCSEs so he could focus on his exams first.

Nick describes the surgery he had to treat the AVM on his brain.

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Age at interview: 21

Sex: Male

Age at diagnosis: 15

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Well, initially they had the embolization, it's when you have an option. That was when I had an option I suppose, usually it's done under local anaesthetic, but I'm not comfortable under local anaesthetic, not when they described the procedure to me. Because it's where they take a really long tube and they take it from the groin in a large artery 'cos that's where the largest artery is, what's that vein' Well whatever, largest vessel, and it goes all the way up your body and into your brain and like they guide it in with I dunno how they guide it in but they do. And they put it in all the correct places and they get little dabs of glue in and they take as many as they can without irritating anything, and then they just take it out.

Then you know a couple of months later they let everything heal up a bit, and they just come in and do it again really. I mean I had an option where I could have a local anaesthetic, and go in and do it like that. But to be honest I don't wanna be lying on a table with tube all the way up me, up into my head and glue, putting glue in there, I don't want to have to think about that, so I said, 'No, no, I don't care if I don't have to eat for a day, just knock me out and do it.'

And did you have that many times as well?

Three times, not too many times because it was quite a large one they did it three times but they probably got several blood vessels each time, it was a very good very good series of procedures, very successful. So it was lucky that way.

Yeah. And then followed the surgery?

Yes, and then the first embolization, and then about two or three months the second embolization, two or three months third embolization, and then it was about two days because they kept on having to delay me going into surgery. They had emergencies coming in, I remember we got a little bit agitated but you can't say someone's just been in a car crash, forget them, get me done, I've been waiting ages for this. I mean they're gonna, they will die so, they go into surgery first, they take priority, understandable, so you wait two or three days. Then you go into surgery after the third embolization, so there's no time to grow anything back and they just take it out really.

After brain surgery, people stayed in an intensive care unit for a few days and were then transferred to a general ward for a few more days.

Everyone we spoke with said they'd experienced very bad headaches after the surgery and been given painkillers both by mouth and directly onto the scar on the head.

Robert describes how he felt just before the operation and the pain he had straight after.

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Age at interview: 17

Sex: Male

Age at diagnosis: 6

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But the day when the actual op was coming I was pretty nervous for that. And I was like Oh God I just like didn't know what to think. I was like thinking shall I turn back round [laugh] not go for it or shall I go for it. I think to myself I am gonna be free from these fits if I have this op. I just carried on walking forward, went in there, in goes the needle and then just like I was put to sleep. Later on I was just like woke up with needles in my foot, one in both hand and some massive plastic bottle on the side of my head and I couldn't turn my head that way, so I had to either lie that way or that way. And I just like wanted it out and they said, 'I am afraid you are gonna have to wait till tomorrow.' I was like, 'Well if I need to go to the toilet you are going to have to go there.' I couldn't sleep through the night because there was some kid opposite crying a lot. And I was just like 'oh I can't cope in this room. I want to get out of here'

Morning comes. They take every needle out my foot. Now the plastic ones weren't painful, but the one in my head I had to lean aside and, 'We will take this out. It won't hurt.' Bang it comes out and they stitch it up really quickly and it was actually quite painful, it was. Then I just like fainted. Woke up a couple of hours later, all fine just feeling all dizzy I did and that was it. Just like I couldn't think straight. It was quite hard.

Donna describes the first few days on the ward after her surgery. Back at home, she didn't want...

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Age at interview: 28

Sex: Female

Age at diagnosis: 3

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I remember going back onto the ward. And obviously being a bit groggy for a few hours, but must have took me by the next, I was sat up. I knew what had happened, 'cos I remember the surgeon coming to see me, I think, the day after, and I remember him saying to me, 'God you look well considering what we've just done to you!' 'Cheers, thanks.' And he said, 'You look really well.' I was sat up in bed and I was chatting away. I remember my husband and my mum coming to pick me up, I had the surgery on the Monday, went in on the Thursday. I remember mum and my husband coming to pick me up, and they walked, they'd just walked in as the nurse was changing my dressing, and I saw my mum's face and I saw my husband's face and I went, 'What? Is it that bad?' And I thought, well I've got to have a look because I saw the shock on their faces, so I went to have a look, oh it was awful! They'd put metal clips in, obviously I had no hair this side, it was all shaved off, and I must have had about 25 stitches from here to here, ooh it looked awful. But it just looked awful, because of the staples. The staples are just not very nice. So poor old, poor old mum and my husband walked into that, my mum's face and my husband's face, that thought, well I've got to have a look, and it weren't very nice. I think because of where it was, whatever went through their mind, the thought of it, and seeing the scar and the staples.

They come out within a week, they did, and I was walking about on the street. I wasn't ashamed of it, I didn't walk around with a hat or anything on. I don't do hats! My mum brought me a hat; I said I'm not going to wear that. And the mother of my husband's two daughters said, 'God you're so brave, walking about and doing your normal,' but that's just me. I should've been in bed but I was walking about doing my normal stuff and doing my shopping the following week. But I wasn't ashamed of what, 'cos I couldn't help it. It was one of those things you know I couldn't sort of stay in the house until my hair grew back, it took about 7- 8 weeks until it grew till so it covered it. I mean it's took a year, this side it's still a bit thinner than that side, but 'cos I've got thick hair, it don't matter does it. I said to my hairdresser this is the only time in my life I've been grateful to have thick hair. Cos it's covered it all up.

A lot of people wouldn't have gone out of the house, but I wasn't ashamed. I remember going shopping and you know what kids are like, I remember seeing this little boy staring, I said to [husband's name] I bet he's wondering, 'What on earth's happened to her?' But, because I'm not a vain person anyway and I don't do hats, mum said, 'Are you sure you don't want a hat?' I said, 'No, I don't, I don't like hats.' And I just carried on doing my daily stuff. Well it gave people something to look at didn't it?

Life after brain surgery

For some people 'successful surgery' means completely stopping the seizures; for others it means fewer or less severe seizures. After a pre-surgical evaluation the neurosurgeon/neurologist would be able to give an idea of the likely odds of a seizure free outcome. Usually it takes two years after surgery to fully assess how successful brain surgery has been.

Donna has been seizure-free since her surgery. Her memory and concentration are much better and...

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Age at interview: 28

Sex: Female

Age at diagnosis: 3

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My concentration is better, I'm getting sharper. I'm so much sharper I can retain information more, what people say to me I can remember. I can remember numbers, I could never remember things before. The information that I'm learning now each day I can remember and that's great. I can see myself the improvement, whereas people used to tell me bank numbers, or any sort of number, a phone number, I couldn't remember. I couldn't remember what I did yesterday, what I remembered yesterday with the epilepsy. Now my brain is so much sharper, that just to me shows what the epilepsy has done, through the years. It's slow, it definitely does slow your brain down, your memory, your concentration, everything. I have improved so much in a year it's unbelievable, I mean I've had the neuropsychology tests done five months after my surgery, and there was a slight improvement in all my memory functions. My numbers was better, everything was better, so that's great. So that is good. I know that the epilepsy's just slowed me down you know, but now things that my friends, things that I wanted to do when I left school, and I couldn't I'm still young enough to do.

I'm hoping to go to college at some point. I want to work with people with disabilities. I'm very good with people anyway, that's just something that comes natural to me. I've lived with a disability myself all my life, I've been working voluntary with adults with learning difficulties, and that's great, yeah. So yeah, like I say, I've got to tell people the bad bits but I've also got to tell them the good bits because you know, it really is good. I can sit here now and say yeah it's great. The twenty five years that I lived with the illness wasn't great at all, I can't really say there was anything nice about it. Epilepsy is not nice, it's like any chronic illness it just puts everything on hold.

After the surgery, Robert can pick up the sounds when he's playing music much better than before...

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Age at interview: 17

Sex: Male

Age at diagnosis: 6

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I am into all the heavy metal music and like every time I'd listen to a song or something, I couldn't really hear the lyrics that well. The words that they would sing out I can't really hear them that well or couldn't. And also like I play guitar, I am trying to train my ear to like pick the sounds instead of like reading tabs and all that, just like listen to it, and really pick the sound up. The drugs may, did muck my hearing up a little bit they do. They were like made things sound totally different. Nowadays when I listen to songs on my MP3 player or on the radio I can hear the lyrics more and I can hear what chord is being played more. And what fret it's being played. I am also not as nervous as I used to be 'cos I was like really, really, nervous and' too worried, a lot. I would like get worried, really nervous.

All the people we spoke with emphasised how hard both physical and emotional recovery from the operation had been. However, one man's doctor had reminded him that, being so young, his body was at 'the best age possible to recover'. One person had several seizures shortly after the surgery and the other half of his body was paralysed (hemiplegia) but he gradually recovered from it.

Recovery from the surgery was physically and emotionally 'tiring' for Nick and progress was slow....

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Age at interview: 21

Sex: Male

Age at diagnosis: 15

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It was tiring. I think that's the main word I can say for it, physically it was always a challenge; emotionally it was always a challenge. I suppose not being able to do something with your arm especially, with my arm. That was the most annoying, but like every time I could move it was like a little triumph you know? It was always working on it, and it was distressing I suppose emotionally, less physically I suppose it wasn't really too much of a physical stress, but it was emotionally it was tiring. Sort of like going to work and doing an office job tiring, rather than doing manual labour sort of tiring. it was always concentrating, always like, 'Oh I've lifted my finger, oh I've moved this finger, and oh I've done this.' But then I had nurses and people around you who go, 'Wow that's great, you're getting this back.' It's always encouraging. And then everyday it gets that little bit better maybe, or like that one day when the morning the nurses would come round and said could you move your arm for me please, and you go, 'Eergh, eergh, grunt grunt grunt, no, nothing.' And then the nurse comes round that evening and the woman goes, 'Can you just try to move your arm for me?' Grunt grunt grunt grunt grunt, arm moves, finger moves a little bit, and then it's like you know, you've just won first place in a race you know. And sort of little triumphs that make the effort worthwhile. But yeah, it's very tiring; I think is the first thing that I would say.

A couple of people said that emotional recovery from surgery was a lot harder than the physical. These young people experienced severe depression after their surgery. Depression is a recognised complication of epilepsy surgery but only occurs in a small minority.

Recovery from the operation was hard for Darren. He was severely depressed and stayed in a...

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Age at interview: 19

Sex: Male

Age at diagnosis: 11

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Well emotionally it was okay whilst I was in there. Physically, I had to stay in bed most of the time which was okay, three days I think it was before I could come out. Just watched TV most of the time, just stayed in bed, watched TV, no video games, and that was it really, three days. Little by little taking off the wires, getting up and walking, just slowly recovering until I could go out again. And they said, they warned me that there could be side effects, which there was. There was the major depression, as soon as I come out of there, until which I went back into hospital for, that was another three months.

How soon did you go, after the operation?

About a week.

So you were basically recovering from the operation in another hospital being treated for depression. Is it a stupid question to ask how that time was for you?

Horrible. I just, remember, going into that hospital and just crying and, 'cos it was so bad. I've never felt so down.

One woman said she hadn't been prepared for the massive emotional impact the surgery would have on her and says she would've liked to have been better prepared for it.

Donna found it difficult to adapt to a seizure-free life. After 25 years, she felt epilepsy was a...

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Age at interview: 28

Sex: Female

Age at diagnosis: 3

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It [epilepsy] becomes such, it becomes such a part of me, it was me. I had it from three to the age of 26, 27, so when I lost the epilepsy I felt like I'd lost part of me. So it's like I went through a grieving process, it's very difficult to understand see. When I said about my surgery I thought I was gonna come out and I thought I would be on the top of the world and I'd be feeling great, and everything would be fine. For one I did too much too quick, I was told I should've paced myself and I didn't. And for two I just thought, 'Oh, well what am I gonna do now?' It was, it's been so strange, I went through the stage where I thought Oh, well this isn't happening, I'm gonna have a fit soon, because I'd got, my life was so used to having the epilepsy. I've struggled to sort of come to terms without it. I spoke to various people from the hospital where I had my treatment, and, they said that anybody that's had the sort of epilepsy that you've had for a lot of years does, will go through this process after the surgery. She said it's not unusual for people to' I was very, very depressed, I was really really depressed, and she said it's not unusual at all, she said you're not an unusual candidate. She said, 'I have a lot of people coming back to me,' this is the neuro psychologist, 'Coming back to me saying that they can't cope, they're tired, you know they're depressed.'

I'm coming through that now, I'm still taking tablets for the depression but I'm coming through it. But it is all just how my life's been I think. It's the lifestyle I've led. And I didn't think I'd ever come to this stage whereas somebody would take the epilepsy away from me, I didn't think I'd ever be in this position. I mean it's great; don't get me wrong, it's great. I'm so much more independent than what I used to be, I am independent anyway, 'cos the epilepsy has made me strong, strong minded and independent. But just getting on a bus, and not having to worry about having a fit, those sort of things I appreciate more now. I can go the shops, just do the normal, I can just do the normal things, without worrying. I used to live my life on a knife edge, worrying when's it gonna come next? When's it gonna come next? You know where am I gonna be, what, am I gonna end up in the middle of the road, and like just going upstairs. My husband could be down here and I'd be upstairs and that's it. I can't walk around with somebody joined to my hip all the time. I had to have some independence. That was always quite difficult. So I had to adapt to sort of life afterwards you know, without it, which has taken me a year and I'm finally now seeing the light at the end of the tunnel.

Through all my bad times I had over the last year, I've always said that having the surgery was the best thing I ever did. It was the hardest thing I've ever done, it was the hardest thing I've ever done. The actual process of it, the physical healing was nothing, it was the mental healing that I struggled with, the mental side of it, not the physical side of it. Physical pain goes away easier than what mental and emotional. See it's 25, 26 years worth of pain built up and it's all just poof, it's all sort of come to an end. It's great, but it's not been easy, it's really really been so difficult because you know it's just been such a part of my life for a lot of years. And now I can, I mean, like I say it's all good now, but it's taken me a year to find that good.

Of the people we spoke with, two had been completely seizure-free since the operation (ten months for one, and nearly two years for the other) whereas for two of the young men the seizures had come back. One started having seizures pretty much straight after the surgery and the other's seizures came back two years after surgery. Both said that the seizures have been different from those they'd had before surgery.

Two years after surgery, Darren's seizures came back and he's been having them ever since. He...

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Age at interview: 19

Sex: Male

Age at diagnosis: 11

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Well the first one [seizure] I had, when I told my parents they just said, 'Oh probably weren't anything.' You know, like the very first one I had, I believed them. Then after that I knew that I was having fits, because it was at night time. It was different as well so I didn't really know and then, like I said the second one, I knew it was fits and 'cos it was at night time it weren't as bad but it's still fits. And it just felt horrible to know that I've been that long without seizures, and they just come back again. And, just, it was horrible.

After the operation when I weren't having them, like a year or so after I thought, you know, 'Ah, you know, they're fully gone', you know. It's worked, and then two years went by I thought, 'Yeah they're definitely gone for good now'. Then, I think it was like two years, few months and then all of a sudden I just had a fit, I don't know, okay they're not gone, and now they've been back ever since. But just get used to the fact that they're gone and then they come back, it weren't, weren't nice.

And is that the main difference is they happen at night now?

Night and day now. At first it was just night, and then, two months ago it just suddenly happened at day, I just had one during the day and now they happen night and day.

One man's seizures had become less severe but more frequent since surgery.

Donna says surgery was 'the hardest but the best' thing she did. She advises others to pace...

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Age at interview: 28

Sex: Female

Age at diagnosis: 3

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I was out of hospital within a couple of days of having it done cos I was ready to come home and everything had gone fine. And I just found it very difficult to pace myself. I've got a young daughter, you know I've got family so, I just found it difficult. Physically I thought I was okay. But I wasn't, I'd gone through a big major surgery, two year programme and then I had the surgery at the end of it. I was told just to pace myself, do a little bit of this, a little bit of that, but of course, me being me, well that's a women thing isn't it. You think you can just do everything, and I just did too much, too soon. I wanted to put right 25 years in six months. If that makes any sense.

I just wanted to do everything that I hadn't had a chance to do, straight away, that's what it was. I wanted to go out and do this, go out and do that, not thinking that of course I've got the rest of my life ahead of me. I wanted to do 25 years in six months, that's what my dad said to me. He said you can't do 25 years in six months, and that's what I wanted to do. And that's where I struggled, I was going out doing voluntary work, far too soon. I was looking after [daughter's name], looking after the house, although my husband was trying to say you know just rest, take it easy, I wouldn't. Because I needed to keep myself busy I think to keep my mind off it. To keep my mind focused off from what I'd had done. Through all that, going through all the bad, I can see the good now.

After I had my surgery I was all over the place, I didn't know whether I wanted to go to college, I was phoning up for different courses. I went and started doing my voluntary work only seven weeks after I had my surgery, which was probably far too soon. I was, doing stuff, silly obsessional things like cleaning the kitchen from top to bottom. I must've just been trying to focus away from feeling so poorly, so you know I was walking for miles and miles, and taking the dog for miles and miles, because I just felt so, so low, and I just felt so poorly continuously for weeks and weeks and weeks and weeks and weeks. Just to be, everyday I thought I'm gonna get up and I'm gonna feel better tomorrow. And I didn't.

I think that brought the depression on as well. The actual recovery from the surgery, the headaches and everything, I was trying to sort of black it out by going off and doing my voluntary work, doing my voluntary work at the charity shop, I'd started doing that. then I was coming home, like as I say I was cleaning the house top to bottom and I was taking on too much, at the time I think, you know I was trying to sort this place out. I was filling forms in to try and get a move, which was ridiculous really. Now thinking about it, I must've filled about ten council forms in. This is where all the strain came from and this is where I got all the depression because mentally I was wearing myself out, mentally and physically I was doing too much. I can see it now, but at the time I couldn't, instead of just relaxing, my brain was just so active and it was all over the place, trying to do this, trying to do that. Trying to sort this problem out, trying to sort that problem out. When really I should've been just putting my feet up and taking it easy, and saying, 'Just sit back Donna and think God what, what have you been through, just take your time.'

Vagal Nerve Stimulation (VNS)

VNS is a treatment for epilepsy where a ‘pacemaker' is implanted under the skin on the left side of the chest almost under the arm. This is connected to a lead with three coils at one end. These coils are wrapped around the vagus nerve in the left side of the neck in a small operation. The generator sends impulses from the vagus nerve in the neck to the brain at certain intervals to reduce the frequency and intensity of seizures.

The side-effects of VNS include change in voice tone when the stimulator comes on, sore/tickling throat, shortness of breath and coughing.

VNS aims to reduce the number, length and severity of seizures. Very few people treated by VNS become totally seizure free, and most people continue to take anti-epileptic medication. How and why VNS works is not fully understood, but it is thought that stimulating the vagus nerve alters the chemical transmissions in the brain.

The battery for the VNS device typically lasts up to 10 years, after which time a further procedure will be needed to replace it.

Morven explains how VNS works and the side effects she's had with it. It hasn't helped her and...

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Age at interview: 21

Sex: Female

Age at diagnosis: 8

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Well the first thing they did was they gave me an operational test on my brain. It's much the same as an EEG but it goes under the skull rather than just on top of the head. so it can get more detail in the seizures. So they gave me that, and then they worked out where it would be best to be putting the wires in the brain. Then they gave me another operation where they inserted the actual battery of the stimulator, just underneath my arm, and they've got the wire just coming up my neck here, and into my brain. So it does make my voice go a bit kind of croaky every five minutes when it does come on. A lot of people think I've got a cold quite a lot of the time but it doesn't actually hurt me or anything like that. And it does kind of make my head kind of jerk a bit if I'm sitting in the wrong position. When I did actually get it at first, I found it really quite annoying when I was lying in my bed 'cos I'd find I just could not actually get myself comfy 'cos my head kept on like jerking like that every few minutes, it'd be really annoying but I've got used to it and now I can sleep perfectly normally it's really just when I'm singing that I find it a bit awkward 'cos the impulses it makes my tone of voice not go quite right. I've got a magnet that switches it off, so I just need to shove that underneath my arm on top of the battery and that's switches off.

Well it comes on automatically roughly every five minutes for about I think it's 30 seconds, like there's six pulses that will go up to my brain. If I did have a seizure that I could maybe, like if I had them during the day, the magnet that I've got to switch it off, if I actually like swiped it over the battery that would switch it on, and it could get the pulse going up to my brain straight away. So if I had a seizure during the day, that was long enough to need that sort of thing, I could switch it on and it might make a difference. The thing's just coming on just now can you hear my voice going funny? It goes a bit tight on the nerve there. So sometimes I can get a bit dry-toned, yeah.

Do you get a sensation with it?

Yes, it kind of gets a bit tight feeling there, and if I'm lying or sitting and my head's like that I can sometimes feel you know the jerk, the feeling a bit that I've got. I find it quite hard to swallow as well when I've got it, so if I'm drinking something it's really quite hard to like take a drink. Or if I'm needing to take my tablets I find when that comes on I just can't swallow it, and it always has to just sit in the back of my mouth until the pulses have gone away. But I just have to make sure that the pulses have just finished before I take my tablets and then just take them all before it starts again [laugh].

Has it helped at all?

No it hasn't made any difference with mine. 'Cos I mean we thought it might make a difference 'cos there was another girl that had it done in [city name] before myself, and it did make a difference for her. I think it almost completely removed the epilepsy from her, but it didn't do the same with me. But it's the same with a lot of people, it's the vagal nerve stimulator works for some people perfectly well, but other people it doesn't make a difference at all, so I was just one of the unlucky ones.

A couple of other people we spoke with had VNS suggested to them by doctors and were thinking about this option. If a consultant believes that VNS might be an option there are a number of criteria a person has to meet:

For Focal-Onset Seizures:

The person has seizures that occur in spite of the correct levels of anti-epileptic drugs or
seizures cannot be treated with anti-epileptic drugs because of intolerable side effects.

And

The patient has failed or is not eligible for surgery.

And

At least 2 complex partial seizures per month OR recurrent life threatening status epilepticus
3 first line anti-epileptic drugs have been tried over a period of at least 2 years.

For Generalised Seizures:

The person has seizures that occur in spite of the correct levels of anti-epileptic drugs or
seizures cannot be treated with anti-epileptic drugs because of intolerable side effects.

And

The patient has failed or is not eligible for surgery.

And

At least 1 generalised seizure per month OR recurrent life threatening status epilepticus
3 first line anti-epileptic drugs have been tried over a period of at least 2 years.

Last reviewed May 2016.

Last updated May 2016.