Epilepsy and Surgery

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Last updated 05 May 2010, review date due 05 Mar 2011

Acknowledgement
Epilepsy Action wishes to thank Dr John Paul Leach, consultant neurologist, Southern General Hospital, Glasgow, UK, for reviewing this information.

Contents

 

Introduction

This information looks at what epilepsy surgery is, and what types of surgery are available in the UK. It also gives some information about who might benefit from surgery, and where you can find further information.

 

Epilepsy surgery

Epilepsy surgery is done to help to stop your seizures, or reduce the number of seizures you have.

 

Kinds of epilepsy surgery

There are many different kinds of epilepsy surgery. The type you might have would depend on the type of seizures you have, and where they begin in your brain. Here are some of the most commonly used.

  

Temporal lobe resection

This is done when the surgeons are sure which part of the brain your seizures start in. The surgery involves having a small part of your brain removed. (Although this sounds worrying, the surgeon will only take away damaged parts that you don’t need.)

Around nine out of 10 people having this surgery have temporal lobe epilepsy. Many people stop having seizures after this surgery. If they do still have seizures, they usually have a lot fewer than they had before the surgery.

  

Multiple subpial transaction

This is used when it’s not possible to remove the part of the brain that’s causing the seizures. The surgeon will make a series of cuts to help separate the damaged part of the brain from the surrounding area. This stops seizures from moving from one part of the brain to other parts of the brain.

Around seven out of 10 people who have this type of surgery find it improves their seizure control.  Between five and seven out of 10 people will be seizure free after multiple subpial transection.

 

Corpus callosotomy

This surgery is used to separate the two sides (hemispheres) of the brain. It’s usually done in children who have severe seizures that start in one hemisphere, and spread to the other side.

It’s difficult to say how many people will become totally seizure free after corpus callosotomy. However, between six and eight out of 10 people will have fewer seizures than they did before surgery.

 

Hemispherectomy

This is major surgery, which involves removing the outer layer of half of the brain (hemisphere). It’s used in children who have seizures because one half of their brain is damaged. Children who need this surgery usually have a rare condition that is present at birth, or appears in the first weeks of life.

After hemispherectomy, between six and eight out of 10 people will become seizure free. The chance of a full recovery is best in young children.

 

Who might benefit from surgery?

To benefit from epilepsy surgery, you will need to meet all of the following requirements.

  • You must have tried several anti-epileptic drugs (AEDs), and they have not stopped, or greatly reduced the number of seizures you have.
  • You must have a specific cause for your epilepsy that can be taken away, without harming you in any other way.
  • The doctors treating you must feel sure that you will have a better quality of life after surgery than you had before.

Tests before surgery

If you’re being considered for surgery, it’s likely you will have lots of tests. This is called a pre-surgical evaluation, and the tests might include the following.

 

EEG

This test tells the doctors about the activity of your brain. During an EEG, a technician places harmless electrodes on your scalp, using a special glue or sticky tape. The electrodes are then connected to the EEG machine that records the electrical signals in your brain on a computer. A video is often done at the same time so that, if you have a seizure, doctors can see exactly what happens.

  

CT scan

This is a type of X-ray that shows the physical structure of your brain. It doesn’t show if you have epilepsy, but it may show if there is an abnormality that could cause epilepsy.

MRI scan

The MRI uses radio waves and a magnetic field, rather than X-rays. Like the CT scan, it can show if there’s a structural cause for your epilepsy.

The MRI is more powerful than the CT scanner, so it can pick up abnormalities that the CT scanner can’t find. 

Functional MRI scan

This is similar to having an MRI scan but, during the scan, you will be asked to perform a task. For example, you may tap your thumb against your fingers, look at pictures or answer questions on a computer screen. This increases the flow of oxygen-rich blood to a particular part of your brain.

This type of MRI scan can help to show exactly which part of your brain handles critical tasks such as thought, speech, movement, and sensation. This information may be important when epilepsy surgery is being considered.

PET scan

This is an imaging test that uses a radioactive substance (called a tracer) to look for information about how the brain is working. It can also show any abnormalities.

SPECT scan

This scan shows different parts of the brain in different colours. The colours show how much blood flow is in each part of the brain. Usually, blood flow is higher in the part of the brain where seizures start.

For some people, a combination of these tests will be needed to show whether surgery is possible.

 

What happens during surgery?

What happens during surgery depends on the type of surgery you have. Usually you will be put to sleep with a general anaesthetic.

The surgery involves making a small opening in your skull to get to the brain. Rarely, your surgeon may wake you up during part of the operation to help the operating team locate the part of your brain that controls language and movement. Your surgeon will be able to explain this to you.

After the surgery, the bone is replaced and fixed to the skull for healing. Most epilepsy surgery takes at least four hours.

 

After epilepsy surgery

When you wake up, your head will be swollen and painful. You will need to take painkillers for a few days. The pain and swelling will get less over the next few weeks.

You will need to rest and relax in the first few weeks after epilepsy surgery, and gradually become more active. It’s usual to stay off work or school for around three months.

Generally, you will continue to take anti-epileptic drugs for a year or two after surgery, but you may be able to reduce, or even stop them, after that.

Risks of having surgery

The risks depend on the type of surgery you have. The following are possible.

  • Memory problems. The temporal lobes handle memory and language. This means that any surgery on these parts of the brain can cause difficulties in remembering, understanding and speaking.
  • More seizures than before. Cutting the connections between the two sides (hemispheres) of the brain in corpus callosotomy stops seizures spreading from one hemisphere to the other. However, it doesn’t stop the seizures. In fact, some people have more, but they are less severe.
  • Visual symptoms - reduced visual field or double vision. After hemispherectomy (where the outer layer of one half of the brain is removed) a person’s area of vision is often reduced or they may have double vision. 
  • Partial, one-sided paralysis. After a hemispherectomy, you may have limited use of one side of your body. Physiotherapy can help with this.

Despite the tests before surgery, it’s not always possible to know exactly what the risks are. However, following the pre-surgery tests the doctors will be able to make an educated decision.

Doctors will only go ahead with surgery if the tests show that the benefits are likely to be higher than the risk of complications.

 

Further information and support

If you would like to find out if surgery could help you, please contact your epilepsy nurse or specialist, or contact the Epilepsy Helpline

If you have already been told that surgery could help your epilepsy, the centre where your surgery is being planned, will be able to tell you more. They will also be able to answer your questions. 

Epilepsy Action’s online community, forum4e, has some members who have had epilepsy surgery.


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.

Comments

It was so nice reading your story Anthony and it gives me hope that my son will get a life back, if he has surgery, at the moment he is on a lot of medication for rasmussens and may have to have a right hemisherectomy. He is very low and depressed, he missed the last year of school, but got back to do his GCSE and went to his prom. He tried to attend college but it was to hard for him. His friends have moved on and he does not have anyone to talk to. I just wished we could find someone who understands what he is going through

He is a fighter and he would love to have a job and just go out with friends and have a bit of a life.

Are you able to drive ?

You have done so well I only hope my son can see the light at the end of the tunnel soon.

Kay (Lewis's mum) oh by the way Lewis will be 17 soon.

i had surgery a year ago and still recovering, my memory and concentration are worse, i lost all my confidence at the moment i am under a psychologist and they are now wanting me to see a psychiatrist, i just wish i had never getting the surgery. my life is worse.

I am having the same simptoms,it is harder to remember things.I have emotional feelings I never had before.I can drive a car now,but I experierence emotional feelings.I take more meds.now than I took when I had seizers.

I also have negative thoughts witch affect my life.My memory has decreased.I wonder if I would have been better now without the surgery I no longer have seizers but ny mental life is worse.reply

I disagree with the part about post surgery depression due to their reasons...My post surgery was due to my inability to concentrate, my short term memory deficits, my inability to control my emotions, my inability to learn new things, etc. My IQ also was reduced 10 points. Until you have expierenced before and after...you couldn't imagine how those little things make such an enormous difference in day to day living. I will never alow my head to be worked on ever again, no matter what the problem....sad to say. -Mike

My son, who is 15 now, has Sturge Weber Syndrome and at 2 and a half had a full right hemispherectomy due to the severe nature of his seizures. We have never looked back. Admittedly he has lost the use of his left arm (but great at putting on socks with one hand!) and his left side is a bit weaker, but he is doing really well. Due to his condition he does have learning difficulties, but is doing extremely well in his special school and having a go at 4 GCSEs. We never thought that would be the case as he could not talk until after the operation or walk. It has been a long journey, but he's learning to play the drums with one arm, has had two girlfriends already and wants to work with children! The operation for us, although risky, was the best for his future quality of life and if anyone reading this has a young child with Sturge Weber and their epilepsy is not under control, don't be afraid to find out all the options. For us, having the surgery as young as he did, meant he can't remember and has a great and happy quality of life.

Hi I had my surgery just one and a half months before my 29th birthday and I've never looked back, also I know people as old as 40 when they had their surgery who have also never looked back so in my opinion your at the perfect age.
Right from the start of my 20s life as you've read about was a complete disaster, no employment, constant seizures, couldn't go out on my own etc, etc.
Now I have a good job, lots of friends, no seizures and even my own house which I've completely funded myself which at one time was something I never thought I'd ever have so yes a complete turnaround.
If there is anything I can do to help you please do stay in touch.
Anthony

I am so glad to read your story I have been looking for someone to talk to that has had the surgery I am looking at. I am 27 years old and I have a right temporal lobe hemangioma that causes complex partial seizures and in the past 3 years has caused a few GradMal seizures, the surgery frightens me and I am just scared of coming out of the surgery still having seizures or having memory loss or personality changes. Do you feel like you made the right decision having the surgery and would you have done it at my age if you were given the option?
Thanks for your time.

Had Right Temporal Lobectomy 7 years ago, had 1 seizure in post operation period before reducing medication and coming off it completely having had no seizures since.
you can read full story via www.justgiving.com/anthonywilliamsway and see for yourself how much it has improved my life.

My son who is 15 has had surgery 2 weeks ago having found a lesion so far no fits was having 20 plus per day. Is now able to hold a conversation and follow what everyone is saying hopefully will go from strenth to strenth.

I had temprol lobe surgery nearly four years ago now due to my epilepsy and although my daytime siezures have improved 90% I now suffer from nocturnal siezures although they are only happening approx every 6 weeks or so.I am still on 1600mg daily of epi medication and also 1000mg of painkillers as I suffer from a constant headaches from the time I get up to the the time I go to bed.My GP has told me to face it, I will never work again which unfortunatly prompted me to have realy negative thoughts and I am now having to take antidepressants as well.My consultant says she intends to change my medication soon,to what I dont know?but unfortunatly I have started to rapidly loose weight recently so she wants my GP to carry out varios tests fo that before any decision is made.I am due yet another MRI scan in the next few weeks touch wood nothing shows out of order.

I am 51 an I had a surgery to remove a cavernous hemangioma in the right temporal lobe of my brain which was causing epilepsy, two years and a half ago. I was having simple and complex partial seizures and occasionnaly absences.
Medication was not controlling my condition and my memory was getting poorer and poorer. I had to take a leave of absence from my work of Occupational therapist.

I had a MRI and WADA test before the surgery. Since that time I am seizure free. The neurologist reduced a lot my medication. And, what is wonderful, my memory got a lot better. I still have problem learning new things, but I remember what I did yesterday. And I can read a novel and remember what I read the day before, what I could not anymore before the surgery.
I am back to work. It is still hard, but I cope.