Brain surgery for epilepsy (neurosurgery)

Who can have epilepsy brain surgery? 

If you have epilepsy which has not responded well to at least two different anti-seizure medications (meds), your doctor may send (refer) you to a specialist surgery centre. This type of epilepsy is sometimes called drug-resistant or refractory epilepsy.  

At the specialist centre they will go through your medical history. They may also suggest doing some further tests or scans to help them understand if surgery is the right choice for you.  

Brain surgery may be an option if your test results show that: 

• the seizures start in a specific part of your brain  
• removing a part of your brain will not cause any further problems 
• you have other medical, social or educational problems due to your seizures 
• your quality of life is likely to improve after surgery 
• there are more benefits of epilepsy surgery than risks. 

Remember, your doctor should always involve you, and your parents or carers, in decisions about your treatment. If surgery is an option for you, your doctor should talk to you about the different types. They should also go through the benefits and risks of surgery, and any possible side effects. 

What is the aim of epilepsy brain surgery?  

The main aim of epilepsy surgery is to stop seizures. But it can also improve your memory, thinking and day-to-day life. For example, if you have less seizures after surgery, you may be better at solving problems and remembering things. You may even do better and enjoy school more. 

 What are the different types of epilepsy brain surgery? 

There are two types of epilepsy brain surgery (neurosurgery) – resective surgery and disconnective surgery. Read more about each of them below. 

Resective surgery  

The most common type of brain surgery is resective surgery. It involves removing only the part of the brain that is causing seizures. The aim of this type of surgery is to stop seizures completely. Types of resective surgery include: 

• Lesionectomy – taking out a lesion (damaged area of brain tissue), such as a tumour or a cyst. 
• Focal resection – removing of an area of the brain where seizures are starting. 
• Lobectomy – removing of one of the brain lobes.  
• Hemispherectomy – removing or stopping one side (hemisphere) of the brain. This is not a common type of surgery. It is used to treat very severe epilepsy in children who already have damage to one side of their brain. 

Disconnective surgery 

The aim of disconnective surgery is to reduce the number of seizures a person has. It does not cure epilepsy. Types of disconnective surgey include: 

• Corpus callosotomy – fibres that connect the two halves of the brain are known as the corpus callosum. In this type of surgery, the fibres are cut to prevent seizures spreading throughout your brain. This type of surgery is usually for children who have frequent falls and injuries from their seizures. 
• Hemispherectomy – surgery that disconnects the cortex (or outer layer) of one half of the brain (hemisphere) from the other without removing it. 

What are the risks of epilepsy brain surgery? 

Like any surgery, epilepsy brain surgery comes with its own risks. Your doctor should talk to you, and your parents or carers, about all the possible risks before you decide if surgery is right for you. 

For most people, brain surgery is safe. It works well and they don’t have any long-term side effects from the surgery. But it’s important to be aware of your risks. Some of the risks of epilepsy brain surgery include: 

• Side effects from anaesthetic. Most epilepsy surgery involves having anaesthetic. This is a medication to temporarily stop you feeling pain. Most children manage well with anaesthetic and don’t have any side effects from it. If you do have side effects, they don’t usually last very long. Side effects can include sore throat, being irritable after waking up from anaesthetic, feeling sick (nausea) or being sick (vomiting), and temporary changes in behaviour. 
• Bleeding. There is a risk of some blood loss during brain surgery, especially during long surgeries. 
• Infection. Risk of infection is slightly higher in young children. 
• Fever. Risk of fever, including a high temperature, is slightly higher in young children. 
• Serious risks, such as brain damage. The risk of having a serious complication after surgery, such as brain damage (injury of brain cells, which stops the brain from working normally), is very low.  

Remember, there are risks with any type of surgery. It’s important to understand the risks before surgery, but it does not mean that these things will happen. If you’re worried, talk to your doctor.

How successful is epilepsy brain surgery?   

For some people, epilepsy surgery can stop seizures altogether. After brain surgery, seven out of 10 people become seizure-free. For others, surgery can reduce the number of seizures and improve day-to-day life. 

How successful your epilepsy surgery is will depend on many different things. For example, the type of operation you’ve had, and which part of your brain was affected. 

After brain surgery, you may still have seizures. This can be common soon after surgery. But if seizures keep happening contact your doctor.  

Who should I talk to about epilepsy brain surgery?   

If you have any questions about epilepsy surgery, or want to know more about it, talk to your doctor. They will be able to explain the different options. They will also through the risks and benefits with you.  

If your doctor thinks epilepsy surgery may be suitable for you, they should send (refer) you to a specialist surgery centre. Here you might see many different health professionals who all specialise in epilepsy surgery, including other doctors and specialist nurses. It may take a while to get brain surgery – the process can sometimes take about a year.  

 What happens before epilepsy brain surgery? 

Before your surgery, your doctor may ask you to wash your hair. This will help keep infection risk low. You may also need to have part, or all, of your hair on your head shaved. Your surgeon (the doctor who does your surgery), or someone from the surgical team, will do this for you. They will explain everything to you before the day of your surgery. If you’re worried or have any questions don’t be afraid to ask them.   

Just before you have surgery, you may need to have another Magnetic Resonance Imaging (MRI) scan. This will give the surgeon the most up-to-date and accurate picture of your brain. They will use this as a guide during the surgery. Read more about the tests and scans you’ll need before surgery. 

If you’re having an anaesthetic (medication to temporarily stop you from feeling pain), you’ll usually meet the anaesthetist (a doctor who specialises in anaesthetics) before you’re surgery. They’ll explain what type of anaesthetic you’re going to have. You may not be allowed to eat or drink before your surgery as it could make you unwell after you’ve had the anaesthetic. 

Before your surgery, it’s normal to feel nervous or overwhelmed. Talk to someone from your medical team if you have any questions or worries. Remember, there’s no such thing as a silly question. Even if you’ve already been told something before, but you don’t remember or you’re not sure if you understand, ask again. The doctors and nurses are there to support you.

 What happens during epilepsy brain surgery? 

Brain surgery usually takes about four to eight hours. How long the operation takes will depend on the type of surgery that you’re having. Your parents or carers won’t be able to come into the operating room (theatre) with you. But they will be able to wait in the hospital and will be there when you wake up. 

Every hospital does things slightly differently. You should get some information about what to expect during your surgery before you go into hospital. What happens during your operation depends on the type of surgery you have. But most brain surgery involves making an opening in the skull. This is so the surgeon can reach the part of your brain that’s causing seizures. After, they will use staples or stitches (sutures) to close the cut (wound) on your head.

Don’t be afraid to ask questions or talk to your doctor about any worries you have before your surgery. Having surgery can feel very overwhelming. The people involved in your care are there to help and reassure you.

What happens after epilepsy brain surgery?  

After you’ve had epilepsy brain surgery, you’ll usually need to stay in hospital for about a week. But how long you stay will vary from person-to-person. When your doctor thinks you’re well enough to go home, they will talk to you about your recovery. For example, they will explain how to look after your surgery scar. 

The cut on your head, made during surgery, will usually be closed with stitches or staples. These are normally removed about a week after surgery. Your doctor or nurse should talk to you about how to keep the wound dry and clean until your stitches are removed. Not touching it will help to avoid infection. 

You may get some side effects soon after you’ve had brain surgery. Some common side effects include: 

• Feeling very tired (fatigue) 
• Feeling sick (nausea) or being sick (vomiting) 
• Headache 
• Low mood 
• Bruising or swelling on your face, eyes or head 
• Constipation (not being able to have a poo) 
• Pain when you yawn or chew food. 

If you get any of these side effects soon after your brain surgery, they can usually be managed well. They should get better within a few days. The health professionals caring for you at the hospital will give you regular pain killers to help with any pain. They will talk to you about any meds you may need when you’re at home. They will also tell you what to do if you have side effects after your surgery. 

After brain surgery, it’s important to rest and take things slowly. It can take a while for the effects of the anaesthetic to wear-off. You may feel very tired and not have much energy. Having lots of drinks, like water or juice, eating balanced meals and getting lots of rest, will all help your recovery.  

If you have any questions about your recovery after brain surgery, talk to your doctor or nurse. They can give you support and information that matches the type of surgery you’re having. 

When will I have a check-up after my surgery? 

After brain surgery, you’ll usually see your doctor and surgeon for a follow-up appointment. This happens about eight to 12 weeks after your surgery. Your doctor may also suggest doing some tests or scans after your surgery. This is so they understand better how the surgery went. But every hospital will do things slightly differently. Ask your doctor or nurse what the follow-up process is for your hospital. 

 How long will it take to recover from epilepsy brain surgery?   

How long it takes to fully recover after brain surgery will vary from person-to-person. Talk to your doctor about your own situation. They will be able to explain the recovery process. They will also talk to you about when you can start doing some of your normal everyday things again, such as school, work or driving.

Looking after yourself after epilepsy brain surgery 

Having brain surgery is a big deal. It’s normal to feel many different emotions, before and after your surgery. You may feel overwhelmed, relief, nervous, or even scared. These are all normal feelings. 

If people close to you haven’t had major surgery before, they might not fully understand what you’re going through. Talking to them about how you feel, and telling them what support you need, can be helpful for you and them. Sometimes, people want to help but they may not know how.  

If you’re struggling with your mental health after having surgery, talk to your doctor or nurse. They may be able to refer you to a psychologist – a health professional who is trained to listen and help you find ways to manage how you feel.

Other useful organisations  

Mind 

www.mind.org.uk 

A charity that supports people with their mental health. 

NHS website 

www.nhs.uk 

Information about epilepsy and different tests and scans. 

NICE website  

www.nice.org.uk  

Up-to-date guidelines for children and young people with epilepsy.