Epilepsy

Neurosurgery for epilepsy

Most people with epilepsy have their seizures well-controlled by medication. However, for a small number of people who have tried all suitable available anti-epileptic drugs and not achieved control, surgery may be an option. Because of the possible risks involved and the fact that surgery for epilepsy is not readily available, this option is only used when other treatments have been unsuccessful.

If a consultant believes that surgery might be an option, a number of tests have to be carried out. These will investigate, for example, whether there is an area in the brain which can be operated on, how safe this would be, and the likely success in terms of seizure control.

The people we interviewed who'd had surgery discussed the various tests used to decide whether surgery was an option. One person described some of the tests he had just before and during the operation, while another recalled her concerns at the time.

Discusses some of the tests he had just before and during surgery.

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Age at interview: 31

Sex: Male

Age at diagnosis: 12

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What they do is reduce your medication, while you're in there and then they sort of prompt you to have a seizure so they can pinpoint it. I then had one, I mean at one time, I think I had to go in there two or three times because I went in one time and I had only one in the night. And they said well they wanted to see if it was different in the day.

...Then um, then, other than that, the problem being where they had to operate was close to the part of the brain which controls the movements. And you, your speech and movement down my right side. So they had to um, anaesthetise sort of like half my brain and sort of get me to speak, to see whether, you know to see which side of it was. And it turned out that the actual part of the brain was quite central which probably accounts for the fact why I'm left handed in some things and right handed in others. I throw left-handed and I kick left footed and so on.

So anyway they did those tests you know, and then it was just basically down to pinpointing exactly where it came from and you know how close it was and which side it was. And consequently I had to be, I only had a local anaesthetic during the operation so that they could ask me questions and get me to say you know, they had sort of, where the area of the brain they had to remove, they said 'OK, I want you to,' - it was quite a weird experience. They say 'count to ten.' And 'One, two, three,' and then they'd press on that side, that part of your brain and then you'd go ' - I was trying to speak and I couldn't. And they'd say 'OK, move your hand,' and they would press it and it would twitch and stuff like that. So they could, so I was lying awake for five hours because, well my brain having no sensation anyway. But it, you know, that wasn't a problem. But it was different to be awake during a brain operation I must admit. Most people cringe but I find it quite an interesting experience.

Discusses her concerns before having surgery for epilepsy.

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Age at interview: 39

Sex: Female

Age at diagnosis: 25

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About '98 my mum decided that I'd been pushed around from pillar to post long enough, testing with all these different tablets and we weren't getting anywhere. And I can't remember exactly how it came about but she discovered that there was an operation suitable for people with epilepsy with a focus, but they had to have the focus, the part of the brain that could be operated on. So I started, I went down to see Professor X and I was at the [hospital] for two weeks. Had the video telemetry at the [hospital] and miracle of miracles they said 'Yes you have got a focus on the brain, and yes we can do something'. It was just fantastic.

Well I was worried because obviously with the brain, it's just a mass of electrical impulses isn't it, and I was a bit worried about, they were fantastic. Right from the word go they said 'These are the possible causes' and the main worry was damage to peripheral vision, which would have stopped me from driving. Luckily that didn't, touch wood, happen. And slight paralysis on the left side because it was on the right and left side might have been affected. Possible memory problems, speech, but I just looked at it as a whole and with my mum and we sat down and said 'Well I've got no sort of quality of life now, so I really haven't got anything to lose.' And I'd been given a chance to have, I felt so honoured to have been told you can have the op and so many people couldn't.

People also discussed their thoughts about the risks involved and their decisions to go ahead with the operation. For many of these people, surgery was a source of hope after years of poorly controlled seizures. One woman explained how a brain tumour was found during surgery and that having the operation was as much for her daughter as it was for her.

Explains why he wanted to have surgery and did not feel nervous before the operation.

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Age at interview: 43

Sex: Male

Age at diagnosis: 9

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What was bothering me most was, or the only thing that was bothering me really, was with it being my left temporal lobe. Fortunately I happen to be left handed, and I could have during the operation had a stroke, possibly, and lost my ability to use my right hand and my right foot. Or lost the sense of feeling down the right side of my body.

And also I think there was something about the possibility of losing the ability to speak or my eyesight I think came into it, if it was that area of the brain or something, which I was worried about of course, what I was mostly worried about at the time. But I was so sick and tired of the seizures, after forty years of them I just wanted to get that out of me, for epilepsy come to an end in my life. So I was ready to accept anything and to go ahead with the operation which, all I can say today is, I'm very pleased I did.

Yeah, did you feel quite at ease in the hospital, were you able to talk to the nurses or you know it was all happening so quickly that you didn't really need to?

Actually there's no place I feel more at home than in a hospital. It might be strange to a number of people but um, I think working all my working years, working for the National Health I, there's nowhere I feel more at home than in a hospital.

Good. So you weren't too nervous or anything, anxious?

I wasn't nervous at all, no.

Explains that a brain tumour was found during surgery and her reasons for having the operation.

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Age at interview: 30

Sex: Female

Age at diagnosis: 9

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As far as we knew all I had was scarring on the right temporal lobe. We found out that I was able to go for the surgery to remove a section of the scarring. If too much was removed then I could be disfigured in some way. Basically once they'd opened me up, they found a benign tumour which was wrapped in scar tissue. They didn't know it was there, they couldn't see it on the scans because it was covered in scar tissue, you can't see through it. Basically they removed as much of it as possible. And I'm happy to say now my seizures have lessened. I was having between ten and twenty seizures a week, now I'll have about eight a month' big difference.

They did actually say to me that there was a risk. I took the risk still because I believed it could improve my life and if not for me for my daughter, because at one stage I wouldn't go out, too frightened to take my daughter out in case something happened to her. First of all I was frightened, I must admit, then the more I thought about it the more I knew it was the right thing.

Another person explained why she decided to have surgery in the USA rather than the UK, although doing this is very rare. She also discussed her feelings before the operation. Other men and women, all of whom had their surgery in the UK, recalled how they felt immediately after the operation. Some people reported having severe headaches, but also recommended surgery for epilepsy.

Explains why she had surgery in the USA rather than in the UK and her feelings before the operation.

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Age at interview: 33

Sex: Female

Age at diagnosis: 21

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I was getting nowhere with the doctors in this country. They just kept saying medication and that's it. And because it was ruling my life I wanted to go on and be able to do things with it, and so I was lucky that I could go and do it elsewhere.

I was frightened going in for major surgery. But the doctors and the nurses made me feel comfortable. They kept you know coming to see me two or three times a day, so that was the nurses, the doctors I saw once or twice a day. If I had any questions I wanted to ask him, the nurses would contact him and he'd be down like a shot. Which made me feel more and more at ease with what I was going through. The day of the surgery I went actually deathly white, mum thought oh God now what's happening. But gradually I got to thinking things will, I'm going to expect in the future, not what I've been through now. It was frightening for myself and my parents who were there ready to support me. It was just nice having people round you when you came out of the surgery, you felt more at ease.

Recalls how he felt after the operation.

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Age at interview: 43

Sex: Male

Age at diagnosis: 9

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I certainly do remember yes, as soon as I regained consciousness, just as they were pushing me out of the theatre, I recognised straight away where I was and my head bandaged up. And I could see, I could still feel down the right side of my body. I was testing myself from top to bottom and nothing was, nothing, no damage at all. And uh, and the nurse, the theatre nurse had told me beforehand that she was going to carry out a test asking me, placing her hands on certain parts of my body and did I feel any pain here, here, and just say 0 to 5; 0 no pain at all, 5 a lot of pain. And there was no pain at all in any part of my body so it was, to me the operation had been a great success, it couldn't have been better.

That's excellent. You remember this quite clearly by the sounds of things?

Yes, I do.

So you felt no pain anywhere, you tested parts of your body and everything seemed fine. How was your head feeling?

Quite comfortable with the bandage wrapped round it, yeah.

When did they actually take the bandage off?

About, I had to stay in the hospital for a week as I lived some distance away from where, from where I was. It wasn't until the end of the week when the bandage was taken off and the stitches were taken out.

Yeah, and you felt fine?

I was fine yeah, I couldn't have felt better really.

Recalls her feelings after having the operation and recommends surgery for epilepsy.

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Age at interview: 35

Sex: Female

Age at diagnosis: 1

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Yeah well as soon as I woke up from it the most terrible headaches, very, very, very painful, you know absolute constant, you know every other hour. It was awful, I could hardly sleep at all, constant. You're so tender aren't you on the side of your head. You know embarrassing to look at yourself in the mirror as well. It was terrible when you're head was obviously all swollen out but it took some time you know to get used to it. But those were the main effects afterwards, but I do remember feeling better as far as the seizures were concerned.

Well I do consider it being a good idea, for anybody who actually has got it, to ask their doctor or you know if they've got a neurologist to ask if they can have some of these MRI scans to check and see if theirs is temporal lobe. And if it is, if theirs is temporal lobe epilepsy, then I'd recommend that they go ahead and have the operation. I really do.

People who became seizure free after having surgery noted the improvements to their lives. A few mentioned that, though they were now seizure free, they very occasionally experienced auras or panic attacks under stress. One man described how neurosurgery had changed his life although he was still having auras. One woman explained how she became seizure free two years after surgery and why she preferred to continue taking medication.

Recalls some of the changes in her life since having surgery.

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Age at interview: 39

Sex: Female

Age at diagnosis: 25

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People even now say to me 'You are so different.' You know I go out, I had to teach myself road sense because now I go out on my own, you know, I have to look both ways to make sure there's nothing coming. Before I would probably be holding on to somebody, which is strange. So you've got to teach yourself to live again, you have.

And the first time I went shopping on my own and I rang mum up when I got back and I just burst into tears, I said 'Mum, I've just been shopping on my own!'. And she burst into tears and so did I, and it sounds such a stupid small thing to anybody else, but its not, to walk round on your own trying on clothes. It took a lot for me to, to do it, but you know I make myself do it now. Just little things every day, you know little challenges, but I think I'm more confident. Definitely.

Describes the effects of surgery on his life although he still has auras.

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Age at interview: 43

Sex: Male

Age at diagnosis: 9

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My best way of describing it was I'd been born again. I was starting a new life and um, and that's just how I felt really. And the operation had been a great success, I had handed my life over to the surgeons and the team, and they had made a great success of it.

So that was the first week, you then went back home, how were things from then onwards?

As time went by it was just the auras, I had been told that with suffering from epilepsy for the first forty years of my life it would take a long time for the auras to wear off. But as for the blank seizures I didn't experience one, I still haven't until today

So you experienced no seizures but you still have the, the odd aura every now and then?

Yes, yes.

Is it the same as before, the same kind of sensations, smells and tastes or, or slightly different?

It is very much the same sort of smell that would bring on an aura, help to bring on an aura, I've always found that its either a perfume perhaps or a fatty meal being cooked. I was in a take-away shop in the street and um that, that could well have helped to bring on an aura.

Yeah. How long does the feeling of the aura last?

I would say ten or fifteen seconds.

Yeah, but you mentioned when we were coming here that now you just try to enjoy that don't you?

Certainly, since my operation I've not had one blank seizure. Um, I, I can enjoy the auras because there's no fear of it being a blank seizure or a blank seizure following on. So I enjoy them more if I'm not involved with anything, if I happen to be involved with something I just acknowledge the aura. But if I can enjoy it, such as sitting at home or I'm not involved with anything, then yes I can enjoy it now.

Explains that she became seizure free two years after surgery and why she does not want to stop...

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Age at interview: 33

Sex: Female

Age at diagnosis: 21

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Well I kept having seizures until sort of November, the year 2000, that's when they finally decided to calm down a little. In November I had like two seizures on one day and then I've been seizure free since then. So it's been four years since I had the surgery. But two years seizure free since then. I had been told it would take a while for the system to calm down, but you can never understand what doctors say.

Yes and are you on medication now?

I'm just on the Tegretol Retard, I was on others but my doctor I see in this country had just said "Let's leave it on the Tegretol and see what happens." I'm not on a high dosage but if I want to ever reduce it I can do. He's left it up to me to making that decision.

And do you think you'll reduce it over time?

May be over time or may be I'll just stay put like it is because I feel happy with it, because you can get very stressed out changing your medication dosage, everything about it.

I'm still on medication, I'm not going to come off it because it frightens me the minute I stop medication that I'll have a major seizure. And the doctor that I see he's willing to leave me on the medication for as long as I want to. I could decrease it if I want to, but I can get my independence with driving round if I want to. And I'm feeling stronger in myself.

For some people, while surgery improves the frequency and intensity of seizures, it does not stop them completely. This man explained that, despite having two operations for epilepsy, he was still having seizures. Several people also discussed the effects of surgery on their memory.

Explains that, although he has had neurosurgery, he still has seizures.

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Age at interview: 31

Sex: Male

Age at diagnosis: 12

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The seizures, they've been better, not sort of dramatically better but they have been better. Obviously there was always the danger, because of scar tissue, that there would uh, you know still be seizures. And whilst the diagnosis, I had more MRI scans afterwards you know, the diagnosis was 'yes they'd removed the problematic area of the brain'. But there was always the danger of scar tissue. So uh, they have been better, they would probably be better if I didn't touch a drop of alcohol, but you know they've been better but not completely. I'd have say six to eight weeks is probably tops. On a good spell its probably six to, a good spell is sort of like every eight weeks.

Explains that she is slowly regaining more of her memory after having surgery.

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Age at interview: 33

Sex: Female

Age at diagnosis: 21

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Okay I lost a bit of memory after the operation, gradually I'm getting sort of memory back. I can remember things of when I was a child more than I can say yesterday, but because I'm not having the seizures so much now I've got more of the memory back there. But they say we can always go through further tests to see how much memory loss you have. But I think I'll just leave it and let it calm down on its own.

...I had problems with the speech which I'd been warned about and memory which they did tests on, they said it will take time for it to calm down. I'm certainly seeing more now, I can remember things of when I was two, three years old more than I can the things yesterday. But it doesn't bother me, it's nice to think of things when you're that size.

Last reviewed May 2016.
Last updated May 2016.