If you would like to talk to someone about epilepsy, our trained advisers are here to help.
The Children’s Epilepsy Surgery Service (CESS) in England is a specialist service that aims to improve access to epilepsy brain surgery for children with difficult to control epilepsy.
It does this by working with other NHS services to ensure children who could benefit are referred. The service then assesses each child’s suitability for epilepsy surgery.
Each CESS centre has an expert team of children’s epilepsy specialists, neurosurgeons, and other healthcare professionals. These teams have the specialist knowledge and skills needed to assess and treat children who are suitable for epilepsy brain surgery.
The CESS is funded by NHS England for children with epilepsy in England. There are 4 specialist CESS centres that will treat children from all over England, not just those in their local area.
Here is a video of some children talking about their epilepsy surgery.
Find our more about CESS
The CESS centres
- Birmingham Children’s Hospital NHS Foundation Trust
- Great Ormond Street Hospital for Children NHS Foundation
- Trust and King’s College Hospital NHS Foundation Trust, London
- Department of Paediatric Neurology, Bristol Royal Hospital for Children
- The Northern Children’s Epilepsy Surgery Services (NorCESS) Alder Hey Children’s NHS Foundation Trust (Liverpool) and Royal Manchester Children’s Hospital (Central Manchester University Hospitals NHS Foundation Trust)
Although CESS is funded by NHS England, it will also treat children who live in Wales but are registered with a GP in England. And they will provide services for children or families in Scotland, Wales or Northern Ireland if their child lives or goes to school in England.
Other children from Wales and Northern Ireland will be referred to the CESS centres for assessment. This is arranged on an individual basis by the local consultant paediatrician or neurologist.
This information looks at what is involved before, during and after epilepsy brain surgery. If your child is already being considered for surgery, the CESS centre will be able to give you more information and answer any questions you have.
Contact details for the CESS centres
Tel: 0121 333 9999
Department of Paediatric Neurology
Level 6 Research & Education Centre
Upper Maudlin Street
Tel: 0117 342 0897
Great Ormond Street
Tel: 020 7405 9200
Tel: 020 3299 9000
The Northern Children’s Epilepsy Surgery Services (NorCESS) is a joint service between Alder Hey Children’s NHS Foundation Trust (Liverpool) and Royal Manchester Children’s Hospital (Central Manchester University Hospitals NHS Foundation Trust)
Tel: 0151 228 4811
(Central Manchester University Hospitals NHS Foundation Trust)
Tel: 0161 276 1234 or 0161 701 5072
Types of epilepsy brain surgery for children
There are many different types of epilepsy brain surgery. The type your child has depends on their type of seizures, and where the seizures begin in their brain. Here are some of the more common types:
This is done when surgeons know which part of the brain the seizures start in. Children having this type of surgery have a small part of their brain removed. Although this sounds worrying, the surgeon will only take away damaged parts that aren’t needed.
If the part of the brain causing the seizures is in the temporal lobe, the surgery is called a ‘temporal’ resection. If the part of the brain causing the seizures is in one of the other lobes, it is called an ‘extra-temporal’ resection.
During this surgery the 2 hemispheres (halves) of the brain are separated. It is mainly used for generalised seizures, particularly frequent drop attacks (tonic and atonic seizures), and myoclonic seizures that affect the whole body. It is also used for severe focal seizures that start in one hemisphere and spread to the other.
Hemispherectomy / hemispherotomy
This is major surgery to remove or separate (disconnect) one half of the outer layer of the brain from the other. It is for children who have seizures because one half of their brain is badly damaged or not working properly.
Removing one hemisphere is called ‘hemispherectomy’. Sometimes the hemisphere is not removed, but completely disconnected from the rest of the brain. This is called hemispherotomy.
Tests before epilepsy brain surgery for children
To find out if your child will be suitable for surgery, the epilepsy team at the CESS centre will thoroughly assess them.
As part of the assessment, they will ask for your child to have a number of tests, which could include:
Electroencephalogram (EEG)/video telemetry
The EEG tells the doctors about the electrical activity in the brain. During this test, your child will sit or lie down. The person doing the test will attach the electrodes to your child’s head with a sticky gel.
They may ask them to breathe deeply for some minutes and also to look at a flashing light. These activities can change the electrical activity in your child’s brain, and this will show on the computer.
In video telemetry, a video recording is done at the same time as the EEG. This means that if your child has a seizure, doctors can see exactly what happens. It will help to show exactly which part of the brain the seizures are coming from. An EEG/video telemetry can be done while your child is awake or asleep, or both.
Invasive EEG telemetry
Some children might need to have more detailed EEG telemetry. This is called invasive EEG telemetry. This can be done with subdural grids/strip electrodes or stereo-EEG. Stereo-EEG is more commonly used.
Subdural grids/strip electrodes
These are placed directly on the surface of the brain. They are good for showing seizures starting on the surface of the brain, but not as good for showing seizures in deeper parts of the brain. They are also good for ‘cortical mapping’. Cortical mapping shows which part of the brain controls a person’s speech and hand or leg functions. Cortical mapping is done to reduce the risk of any complications after the surgery.
This is good for looking deeper into the brain, and also for seeing what is happening in both sides of the brain. After some careful planning, the neurosurgeon identifies the areas of the brain where stereo-EEG electrodes need to be placed. They then place the electrodes in the brain, through small holes in the skull.
The information from invasive EEG telemetry will be reviewed and a decision made about whether epilepsy surgery should go ahead.
Are there any risks in having invasive EEG telemetry?
There are some risks from both types of invasive EEG monitoring. These are rare but can include a loss of speech or paralysis down one side of the body.
Magnetic resonance imaging (MRI scan)
MRI stands for magnetic resonance imaging. An MRI scan uses a strong magnetic field and radio waves to create pictures on a computer, of tissues, organs and other structures inside your child’s body.
Functional MRI scan (fMRI)
This is similar to the MRI scan but, during the scan, your child will be asked to do something, such as:
- Tap their thumb against their fingers or do other more difficult finger movements
- Look at pictures
- Answer questions on a computer screen
These activities increase the flow of oxygen-rich blood to a particular part of the brain. From these activities it will be possible to see which part of the brain manages important tasks such as thought, speech and language, movement and sensation.
Positron emission tomography (PET scan)
This scan uses a radioactive substance, called a tracer, to look for information about how the brain is working. It can also show if there’s a structural cause for the epilepsy.
Single-photon emission computed tomography (SPECT scan)
This scan shows different parts of the brain in different colours. Your child will be given an injection of a radioactive dye, which will go to their brain. The different colours show how much blood flow is in each part of the brain. Usually, blood flow is highest in the part of the brain where seizures start.
There are 2 sorts of SPECT scans: one is the inter-ictal and the other is the ictal. ‘Inter’ means between and so the inter-ictal SPECT scan is done between seizures. Ictal means seizure, so the ictal SPECT scan is done just after a child has had a seizure.
Magnetoencephalography (MEG scan)
This is a newer type of scan, and is only available in very special circumstances. The scanner sits outside your child’s head and measures their brain activity.
It can tell which parts of your child’s brain are active during a certain task. It can also help show where in the brain your child’s seizures happen.
These are tests that show if your child has any memory or learning problems. They can take up to 6, or sometimes 8 hours, split into 2 or 3 different sessions, and involve a number of games and puzzles.
The results of the tests may help the surgeon to plan the type of surgery your child might need. They can also show whether the surgery will affect any functions that can’t be taken over by other parts of the brain.
This is to try to make sure your child will not have any problems after surgery that they didn’t have before.
Your child will see a psychiatrist with experience of epilepsy brain surgery as part of their initial assessment. They will check whether they have any emotional and behaviour problems, as these can affect some children with epilepsy. And they will be able to suggest any treatment your child needs.
The psychiatrist will also be one of the people who checks with you and your child what your aims and expectations are for surgery.
Your child might have some other types of assessments, depending on the type of epilepsy, and problems they have. These assessments might include some of the following:
- Speech and language
- Vision, particularly peripheral vision (side vision)
- The need for occupational therapy
- The need for physiotherapy
What happens after the tests?
After the tests have been carried out, the epilepsy team at the CESS centre will look at the results and decide whether surgery is possible. They should make one of the following decisions:
- Surgery will be offered without needing to do more tests
- Surgery may be possible but further tests are needed
- Surgery may be possible in the future but not at the present time
- Surgery is not possible
If surgery is not appropriate, your child will be referred back to the local epilepsy specialist with a plan for managing their epilepsy.
If surgery is offered, you will have an appointment with doctors from the epilepsy team at the CESS centre. This is so they can give you more information about the type of surgery and the possible risks and benefits to your child. After this, you will be asked to think about the information and decide if you want your child to have the surgery.
Your child shouldn’t have to wait for longer than 18 weeks, from when the original referral to CESS was made, to have the procedure. These waiting times can be suspended if the epilepsy team decides to monitor your child’s epilepsy for longer. You can also ask for more time to decide whether you want your child to have the surgery.
What happens on the day of surgery?
Your child will be very carefully prepared for surgery in the operating theatre. They will be put to sleep with a general anaesthetic.
Altogether, this part of the operation may take up to 2 hours.
What happens during surgery?
What happens during surgery will depend on the type of surgery the child is having. Most children will have a small cut made in their skull, so that the surgeon can see their brain. The surgeon may then remove some bone.
On rare occasions, and only usually in children older than 12 years, the surgeon may wake the child up during part of the operation. This is done so that they can find the part of the brain that controls language and movement. The surgeon will explain to your child why this happens. Afterwards, the bone is replaced and fixed to the skull for healing.
Most epilepsy brain surgery takes at least 4 to 6 hours, and sometimes longer.
What happens after surgery?
After their surgery, your child:
- Will have a swollen and painful head and face from a few days to 2 weeks. One or both eyes may be swollen and difficult to open
- Will need to take painkillers for a few days
- Will need to rest and relax for a few weeks, but gradually become more active
- Will probably stay away from school for a few weeks, but most children are back by 6 weeks. This should be discussed with your child’s surgery team
- Shouldn’t play contact sports for at least 4 to 6 months
Most children will need to stay in hospital for around 7 to 10 days following surgery. The amount of time can vary depending on the type of surgery. Some children may have to stay in hospital for longer whilst they recover.
Your CESS centre will give you advice about caring for your child once they leave hospital.
Below are some general guidelines for activities parents commonly ask about:
You can usually wash your child’s hair before they leave hospital. This might be with the support of the ward nurses. Depending on your CESS centre’s practice, this is likely to be between 3 and 7 days after their surgery.
It will also depend on the type of stitches used. The advice is only to use shampoo and no other hair products, such as conditioner, until the wound has completely healed. Hot hair dryers and straighteners should be avoided initially. Your epilepsy nurse will be able to advise you further.
Returning to school
This is very much decided on an individual basis but may be up to a few weeks. It is recommended that going back to school starts off slowly – usually with a visit and then gradually building up from a couple of hours to full time. Most children are likely to be back by 6 weeks after surgery. If your child returns before then, they should avoid any outdoor play until 6 weeks after surgery.
Leisure activities (excluding contact sports)
Your child can go back to their usual activities between 6 and 12 weeks after surgery. Please discuss this further with your surgeon or epilepsy surgery specialist nurse practitioner.
While your child should avoid contact sports in the initial post-surgery recovery period at home, they can usually go back to them between 6 and 12 months after surgery. Some surgeons are happy for this to start earlier. It is very important to discuss this with your surgeon and epilepsy surgery specialist nurse practitioner as this can vary depending on the contact sport.
Because of the risk of infection, it is important your child avoids swimming for 6 weeks following surgery. When they start swimming again, it is very important that their usual measures for having epilepsy and being safe in the water are in place.
If you are planning to fly soon after your child’s surgery, it is important to discuss this with their surgeon or epilepsy surgery specialist nurse practitioner. Your child may require an x-ray to check they are safe to fly and might need a fit-to-fly letter before being able to travel.
After surgery care
Once your child leaves hospital, their care will be shared between the CESS centre and the doctor who referred them for surgery.
Epilepsy medicine after surgery
Your child will usually need to continue taking their epilepsy medicine for between 6 months and 2 years after their epilepsy surgery. The decision about reducing or stopping it will depend on whether or not they are still having seizures, and your thoughts and feelings.
If their medicine is reduced, this will be done gradually. You will be told how to do this and will be supported during the process.
Your child’s local healthcare team will:
- Arrange follow-up appointments to check their progress after surgery
- Keep in touch with your child, possibly for several years after surgery
- Arrange any development, emotional, behaviour or local services your child needs
Success rates for brain surgery in children
Many children will no longer have seizures following their epilepsy surgery. Across all the surgery types, around 6 in 10 children will be seizure free after 5 years. Once a child has been seizure free for 5 years, it’s rare for their seizures to come back.
The success rate varies between the different types of surgery. Hemispheric surgery is the most effective in stopping seizures, followed by temporal lobe resection and then extra-temporal lobe resection.
For children whose epilepsy is caused by some damage or other problem in a specific part of the brain, over 7 in 10 could stop having seizures after surgery.
Benefits and risks
The tests and assessments done before epilepsy surgery are very thorough. They are to make sure that the benefits of surgery are higher than the risk of any complications.
The main benefits are stopping or significantly reducing seizures. But successful epilepsy surgery may also have other benefits, such as:
- Being able to stop or reduce epilepsy medicines and their side effects
- Improved quality of life
The risks depend on the part of the brain being operated on. You will be able to discuss these with the surgery team before the final decision is made about surgery for your child.
Here are some possible risks:
Complications from surgery
As with any major surgery, there is a small risk of infection or bleeding. If there are any complications from surgery, this could mean your child will need to stay in hospital longer than expected.
The temporal lobes handle memory and language, so any surgery on the temporal lobes can cause problems with remembering, understanding and speaking. The memory problems can be for things that a child has seen (‘visual memory’) or for things that a child has heard (‘auditory or verbal memory’).
More seizures than before
Cutting the connections between the 2 hemispheres (sides) of the brain in corpus callosotomy stops seizures spreading from one hemisphere to the other. But it doesn’t stop all the seizures, only the drop attacks. In fact, some children may have more focal (partial) seizures, but they are less severe.
After removing one hemisphere of the brain in hemispherectomy, a child’s vision might be affected for a few days or weeks. Their vision might be reduced, or they might have double vision. They might also have some problems with their peripheral vision. This could be temporary or permanent, depending on how much of the brain has been removed.
After hemispherectomy or hemispherotomy, a child may have limited use of one side of their body. This paralysis is called a ‘hemiparesis’ or ‘hemiplegia’. Physiotherapy and occupational therapy can help children affected with this.
Some children may have had behaviour problems before the surgery. Or they may have had problems communicating or relating to other people. Epilepsy surgery itself will probably not help these problems. It is even possible that a very few children will have worse problems than before.
Referral to a CESS centre
The National Institute for Health and Care Excellence (NICE) says that children with epilepsy should have regular reviews of their epilepsy and treatment. At their review, or if they are having problems with their epilepsy at any other time, they may be referred to a CESS centre.
This is most likely if:
- An MRI scan shows that there is some damage or other problem in a specific part of the brain or
- Initial treatment with epilepsy medicines does not result in a seizure free period of six months
The CESS centre will look at the information in the referral and should accept it if the child has any of these things:
- Severe epilepsy that started in the first few years of life, and is thought to come from a single part of their brain
- A magnetic resonance imaging (MRI) brain scan which has shown an abnormality in one or more parts of the brain. An example might be a benign tumour or a hypothalamic hamartoma
- Focal epilepsy (also called partial epilepsy) that has not been controlled with 2 epilepsy medicines, used either singly or together. These children may, or may not, have an abnormality on an MRI scan
- A weakness down one side of the body (hemiplegia) and epilepsy that has not been controlled with 2 epilepsy medicines, used either singly or together
- Sturge-Weber syndrome or Rasmussen’s syndrome
- Drop attacks
- Tuberous sclerosis complex (TSC) with epilepsy that has not been controlled by 2 epilepsy medicines, that have been used either singly or together
Support and services
The centre your child is referred to will make sure you and your child have access to the support and services listed below. This includes during the assessment, before, during and after their surgery:
- The chance to visit the CESS centre and meet the surgery team before surgery
- Support for your family for the time when your child is in hospital
- A child-friendly environment with toys, books and activities that are right for your child
- A management plan agreed with you and your child. This should include details about follow-up care, and the monitoring and review process
- A named doctor or healthcare professional who will coordinate your child’s care and act as a link between you and the people treating your child
- Access to a member of the team for advice, information and support 24 hours a day
- Access to an epilepsy specialist nurse
You will also be given clear information about your child’s condition including:
- A description of their epilepsy
- How their epilepsy will be managed
- Medicines and other treatments they might receive
- How you and your child can get the best from their treatment
- Emotional and behavioural support
- Details of patient support groups and charities
- Contact details for your child’s named nurse
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