Epilepsy surgery is the name for the different types of brain surgery (also called neurosurgery) that some people with epilepsy have, to stop or reduce their seizures.
There are different kinds of epilepsy surgery. One kind of surgery involves removing a specific area of the brain which is thought to be causing the seizures. Another kind involves separating the part of the brain that is causing seizures from the rest of the brain.
On this page when we use the word 'surgery' we mean epilepsy surgery.
When would someone have surgery?
For some people surgery can stop or reduce the number of seizures they have. It might be considered if anti-epileptic drugs (AEDs) have not stopped or significantly reduced the number of seizures a person has.
Can I have surgery?
Surgery may be possible for both adults and children, and might be considered if:
- you have tried several AEDs and none of them have stopped or significantly reduced your seizures; and
- a cause for your epilepsy can be found in a specific area of your brain, and this is an area where surgery is possible.
Whether you are suitable for surgery is something that you may like to talk to your GP or neurologist about. If you meet these criteria and are considered for surgery, you will need to have further tests before you can have the surgery.
How do I know if my epilepsy has a specific cause?
One of the tests sometimes used to help diagnose epilepsy is a brain scan. You may have either an MRI (magnetic resonance imaging) scan or a CT (computerised tomography) scan. Although they use different technology, both produce an image of your brain which may show a specific cause for your epilepsy.
Known causes can include scarring on the brain, malformations of brain development (problems in how the brain forms), or damage to the brain from a head injury, or following an infection such as meningitis. If a specific cause is found, it is called the 'epileptogenic lesion'. The epileptogenic lesion can be different in each person.
The tests used before surgery
If you are referred for surgery you will probably go to a specialist centre for tests. There are many different pre-surgical tests you might have before you can be given the go-ahead for surgery. This could include further MRI scans, an EEG (electroencephalogram) and video telemetry (an EEG while also being filmed). Other types of scans may also be done, which trace a chemical injected into the body. This can show detailed information about where seizures start in the brain.
Memory and psychological tests are also used to see how your memory and lifestyle might be affected after the surgery. These types of tests also help the doctors to see how you are likely to cope with the impact of having this type of surgery.
The tests will confirm whether:
- the surgeons can reach the epileptogenic lesion during surgery and can remove it safely without causing new problems;
- other parts of your brain could be affected by the surgery, for example the parts that control your speech, sight, movement or hearing;
- you have a good chance of having your seizures stopped by the surgery; and
- you have any other medical conditions that would stop you from having this kind of surgery.
The results from the tests will help you and your neurologist decide whether surgery is an option for you, and what the result of the surgery might be.
For some people the results show that surgery is not an option: the majority of people who are recommended for surgery, and have these tests carried out, are unable to have surgery.
Based on the results from the pre-surgical tests, your specialist will talk with you about the possible risks and benefits of having surgery.
Deciding whether to have surgery
Having any kind of surgery on the brain is a big decision and you may have lots of questions or concerns that you want to discuss before you are able to make up your mind. The doctors will be used to this because it is an important part of deciding about, and preparing for, surgery.
To give you the full picture when deciding about having surgery, your doctor will explain to you about the potential risks of the kind of surgery you are having. Although your doctor can give you information and advice, the final decision is yours. To give you time to talk about how you are feeling about having surgery, you may be offered some form of pre-surgical counselling.
You can read the personal experiences of people who have undergone epilepsy surgery or who are considering it.
What are the possible risks of surgery?
For any type of surgery, there are possible risks relating to how the person responds to anaesthetic, or to any complications that happen during the operation.
Risks for epilepsy surgery will vary depending on what type of surgery a person has. The most common type of epilepsy surgery is removal of part, or all, of the temporal lobe. Possible risks of this type of surgery include problems with memory, a partial loss of sight, depression or other mood problems. These risks will vary from person to person, and may be only temporary in some cases. For some people, their memory and mood could improve after epilepsy surgery. Therefore the chance to ask your medical team questions before surgery is very important, to help you understand what the specific possible risks are for you.
Can I change my mind?
You may feel very excited about the surgery and the positive effect you’re hoping it will have on your life, or you might be feeling nervious about it. This is absolutely normal and is to be expected. You might also feel that you’ve changed your mind about having surgery, for whatever reason. This is ok – it is a big decision and you have the right to say no to the surgery if you don’t want to have it.
Immediately after the surgery your doctors will monitor your recovery. For the first few days you may feel very tired and need to sleep, as it can take a while for the anaesthetic to completely wear off.
Some people who have brain surgery will have seizures within the first week of surgery - but this doesn’t mean the surgery has not been successful. Seizures after surgery can happen because of the direct stress the brain experiences in surgery, rather than because a person has a history of epilepsy.
How long you may need to spend in hospital will depend on the type of surgery you have had and how the doctors feel you are recovering. Generally your doctors might expect you to be back to your normal activity about six weeks after your surgery.
Reviews after surgery
Following surgery most people will have reviews with their doctors about their recovery and any seizure activity. How often you will need a review will be something you and your doctors will decide together.
How will I know if my surgery has worked?
Before your surgery your medical team will have talked with you about the aims of your surgery and how successful they expect the surgery to be. For some people “successful surgery” may mean completely stopping all seizures, for others it may mean reducing the number or severity of their seizures. Usually it takes two years after surgery to fully measure how successful your surgery has been.
How successful is epilepsy surgery?
Around 70% of people (7 in 10 people) who have temporal lobe surgery find that the surgery stops their seizures and they become seizure-free, and for a further 20% (1 in 5 people) their seizures are reduced. Around 50% of people (half) who have temporal lobe surgery are still seizure-free 10 years after their surgery, but most of these people will still take their AEDs for some time.
You can talk to your neurologist about when might be the best time to start to slowly come off the AEDs.