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Key points
- Epilepsy surgery can be an option for children who have seizures that are not controlled with medicines
- Many children who have surgery will stop having seizures or have fewer of them. This can lead to a better quality of life for many children and families
- Epilepsy surgery can come with some risks. Your epilepsy specialist will go through these with you in detail
- Having epilepsy surgery can be a long process. Many tests are used to confirm if surgery is an option for your child
- Deciding if your child should have epilepsy surgery can be a big decision. You may need plenty of time. Support is available
What is epilepsy surgery for children?
Epilepsy surgery is an operation on the brain. It aims to stop or reduce seizures and improve quality of life. Surgery can be an option for children who have drug-resistant epilepsy. This is any epilepsy where seizures are not well controlled by medicines.
Around 4 in 10 young children diagnosed with epilepsy may go on to develop drug-resistant seizures. Studies suggest at least 300 children with epilepsy in England could benefit from having surgery every year.
This type of surgery is also sometimes called paediatric epilepsy surgery.
What is the success rate for children’s epilepsy surgery?
The success of surgery can depend on the type of epilepsy and the type of surgery that your child has. Most children who have surgery will stop having seizures or have fewer of them.
One study found that around 7 in 10 children who have resective epilepsy surgery are seizure-free in the first year. These numbers will be different for different types of surgery.
A small number of children can start having seizures again after being seizure-free for a while following resective surgery. This does become less likely over time. Particularly if the child has stayed free of seizures for at least 2 years following surgery.
The same study found that overall, around 6 in 10 children who have resective surgery are free of seizures after 10 years.
These numbers are based on general populations of children with epilepsy. It is hard to predict how successful epilepsy surgery could be for each child. Your epilepsy specialist can discuss this with you in more detail.
If you just need to talk it through with someone, you can message our helpline or call on 0808 8005050.
Could my child have epilepsy surgery?
Epilepsy surgery could be an option if:
- Your child has drug-resistant epilepsy. Or, if doctors think that they are likely to have drug-resistant epilepsy. This means they still have seizures after trying at least two different types of epilepsy medicine. These can be tried separately and together
- Doctors can identify a specific area of the brain that is causing seizures. For example, if an MRI scan shows injury to a particular area
Find out more about whether your child might benefit from epilepsy surgery on our Children’s Epilepsy Surgery Service (CESS) page.
The Children’s Epilepsy Surgery Service (CESS)
The Children’s Epilepsy Surgery Service (CESS) helps children access epilepsy surgery. CESS can assess whether your child might benefit from epilepsy surgery.
Find out lots of information about CESS and how it works on our dedicated CESS page.
What is it like to have epilepsy surgery?
Epilepsy surgery might be difficult to think about. Particularly for your child.
You can hear from children and families who have been through the process in this film.
More stories from families who have had epilepsy surgery
Here are more epilepsy surgery stories from young people and their families:
- Bristol Royal Hospital for Children: Paediatric epilepsy surgery page
- Birmingham Children’s Hospital: Patient stories
- BBC Operation Ouch followed a young patient having epilepsy surgery at Bristol Royal Hospital for Children in 2021
- A UK research study asked families all about their experiences of epilepsy surgery. Read it for free here
The specialist epilepsy teams at CESS may be able to put you in contact with other families who have been through the process. Find contact details for each CESS centre here.
Types of epilepsy surgery for children
- Resective surgery: The surgeon removes the part of the brain that is causing seizures
- Disconnection surgery: One part of the brain is disconnected from another part. This is to make the seizures less severe
- Laser beam surgery (LiTT): A thin laser probe is used to destroy the area of the brain that is causing seizures. Read more about laser beam surgery
- Vagus nerve stimulation (VNS): This can be an option for children who cannot have epilepsy brain surgery. It uses a device implanted under the skin in the chest to send electrical impulses to the brain. VNS is used alongside medicines. Find out more about vagus nerve stimulation
Find out more about different types of surgery on our epilepsy surgery for adults page.
Benefits of epilepsy surgery for children
Outcomes after surgery can vary between individuals. It can depend a lot on the type of epilepsy your child has, and the type of surgery. Your specialist will be able to tell you more about possible benefits of any surgery offered. They can also guide you on what you may be able to expect if your child does have surgery.
Some positive outcomes of surgery can include:
Having fewer seizures, or no seizures at all
Many children who have epilepsy surgery stop having seizures altogether. Even if surgery does not stop seizures, it may still help to reduce the number or severity of seizures.
Better management of seizure-related risks
Reducing seizures with epilepsy surgery can help to decrease the chance of accidental injury. It can also reduce the risk of epilepsy-related death. This includes sudden unexpected death in epilepsy (SUDEP).
Healthy brain development
Some research suggests that successful epilepsy surgery can help to protect the brain. This is because having repeated seizures over a long time can cause injury to the brain. This can affect our ability to learn and develop different skills. In this way, surgery may also help to ensure healthy brain development as your child grows.
Less need for epilepsy medicines and fewer side effects
Epilepsy surgery can help to reduce the number of medicines that children take, in some cases.
For example, in one study children took fewer epilepsy medicines after disconnection surgery (corpus callosotomy). They took an average of three medicines before surgery and two medicines after surgery.
Better quality of life
Families with children who have had epilepsy surgery report improved quality of life and wellbeing for their child.
In one study, children described feeling happier and more relaxed after epilepsy surgery. Parents said their children were calmer, and more confident.
Balancing the pros and cons of surgery
Epilepsy surgery also comes with some risks. These risks are different for each person, and for each type of surgery.
Doctors will only offer epilepsy surgery as an option for your child if:
- They believe that surgery will help your child, and
- The risks of having surgery are lower than the risks of not having surgery
Your epilepsy specialist team can help you decide if surgery is the best option for your child. They will discuss the potential benefits and risks. They can also answer any questions that you have. They will help you gain a full understanding of what is involved, to help you come to a decision.
Risks of epilepsy surgery for children
Some of the risks related to epilepsy surgery include:
Possible complications from surgery
Any surgery can have complications. Many of these are temporary and will get better. For example, there can be a risk of post-surgery bleeding or infection. Or, issues related to having anaesthesia during surgery.
In one study, around 6 in 100 (6%) of children had these types of complications after surgery for focal epilepsy. This means that out of every 100 children who had surgery, 94 (94%) did not have these problems.
Epilepsy brain surgery also has a small risk of fluid leaking from the area around the brain and spinal cord. In the same study, around 15 in 100 (15%) children had this type of complication. This means that out of every 100 children who had surgery, 85 (85%) did not have this issue.
The Royal College of Anaesthetists has lots of information to help families understand more about surgery and related risks.
Changes to body functions after surgery
Different areas of the brain control different functions and tasks. Some types of surgery can come with a risk of changes linked to the area of the brain that is being operated on.
This can cause:
- Changes to memory
- Speech difficulties
- Vision changes, particularly to the visual field (side vision)
- Weakness in a part of the body
- Mood and behaviour changes
Many of these changes are temporary and get better over time. But some may be more significant, and last for longer.
The tests carried out before surgery can help doctors understand exactly how body functions could be affected. This can help doctors to minimise any risks and manage any possible changes.
Changes to seizures
After surgery, seizures may occasionally:
- Temporarily worsen
- Happen more often
- Change in type
The reasons for this can be complex and depend on your child’s epilepsy.
For example, disconnection surgery helps to stop seizures travelling from one side of the brain to the other. This can help to prevent atonic (drop) seizures. But it does not usually stop partial (focal) seizures.
This means that a small number of children may have different or milder seizures after disconnection surgery. For some, these may be more frequent than before.
How long is the wait for surgery?
Having epilepsy surgery can be a long process. There are many tests that can be used to confirm if surgery is an option for your child. It can take a while to go through all of these.
Find out more about these tests and scans.
Your child will go onto a waiting list once you have decided to have surgery. This can also take time.
Guidelines say that any surgery should take place within 18 weeks of your child’s referral to CESS. Usually, the wait time is longer than this. Sometimes it can be shorter. It can depend on the needs of your child and the type of surgery that your child is having.
You can also ask for more time to decide whether you want your child to have the surgery.
Support for you
Deciding to go ahead with the surgery and then having to wait can be difficult. Our wellbeing pages have ways to help you manage stress. Or if you need to talk, call our Helpline on 0808 800 5050.
What happens during surgery?
Most epilepsy surgeries with children take several hours. Usually, the operation will take place while your child is asleep. This is called general anaesthesia.
Surgery usually involves making a cut in the skull. A small piece of bone is sometimes removed to access the brain. This piece will be replaced and fixed to the skull for healing at the end of the surgery.
How will my child feel after surgery?
Your child may have bruising or swelling to their head and face after the surgery. They may need painkillers for at least a few days. The swelling and bruising will improve over time.
Your child may also have some or all of the following:
- Headache
- Pain when chewing and yawning
- Feeling very tired (fatigue)
- Problems going to the toilet (constipation)
These will also improve over time. Your specialist epilepsy team will give you all the information you need. This will include signs to look out for, and how to contact the team with any concerns.
It is also normal to have a dip in mood soon after surgery. This should improve over a few weeks or months. Read more about low mood after epilepsy surgery here.
How long will my child stay in hospital?
Usually, your child will need to stay in hospital for around 3 to 7 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. This is to recover, or have any post-surgery rehabilitation they might need.
What happens once my child leaves hospital?
Once your child is home, their care is shared between the specialist epilepsy team and the doctor who referred them for surgery.
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 local services for your child. These can help with any development, emotional, or behaviour needs
Adjusting to life after epilepsy surgery
It can take weeks or months after surgery to fully recover. Usually, 6 to 9 months is needed to know how successful surgery has been.
It can also take time to adjust in other ways. Parents and families of children who have had surgery report that they needed time. This was to get used to a completely new way of life. Some parents talked about letting go of the caring role, as children became more independent. For some there were still worries about seizures coming back. Families said that epilepsy was still a part of their life, but in a different way.
Many said that sharing their experiences with others was very important.
We have several support services that can help you through this time. Contact our Helpline on 0808 800 5050 to find out more.
Stopping epilepsy medicines after surgery
Your child will usually need to continue taking their epilepsy medicine for at least 6 to 12 months after surgery. The decision about reducing or stopping it will depend on if they are still having seizures. It will also depend on you and your child’s thoughts and feelings.
If your child’s medicine is reduced, this will be done gradually. Your doctor will tell you how to do this. You will be fully supported during the process.
It’s important that your child keeps taking their epilepsy medicines until it has been agreed by a doctor.
Recovery FAQs for children after epilepsy surgery
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When can my child return to their usual activities?
Every child’s recovery is individual. They will usually need to rest and relax for a few weeks after surgery. They will gradually become able to do more as they recover.
Your child will need to avoid doing more energetic activities until at least 6 weeks after surgery. They can then go back to most of their usual activities between 6 and 12 weeks after surgery.
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When can my child return to school after epilepsy surgery?
Returning to school after surgery is an individual decision. Your child will probably be off school for at least a few weeks. Most children are back at school by 4 to 6 weeks after surgery. If your child returns sooner, they should avoid school activities that could lead to bumps or collisions until 6 weeks after surgery.
Your child may want to go back to school slowly. They could start with a visit and gradually build up from a couple of hours to full time.
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How long after epilepsy surgery can my child play sports?
Your child may need to avoid contact sports for a while after epilepsy surgery. They can usually return to these sports between 6 and 12 months following surgery. This could be sooner depending on the type of surgery and the type of sport.
Your epilepsy specialist nurse or surgeon will give you more advice on the best plan for your child.
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When can my child go swimming after epilepsy surgery?
Your child will need to avoid swimming for at least 6 weeks following surgery. This is to reduce any risk of infection.
When your child returns to swimming it is important to still take their usual safety precautions. This is to help keep them safe in the water.
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When is my child ok to fly after surgery?
Check with your epilepsy specialist if your child needs to fly soon after epilepsy surgery. They may require an x-ray to check they are safe to fly.
Your child may also need a fit-to-fly letter before being able to travel.
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Sources
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Jobst, BC, (2015) Consensus Over Individualism: Validation of the ILAE Definition for Drug Resistant Epilepsy. Epilepsy Currents 15(4) pp. 172–73, Available at: https://doi.org/10.5698/1535-7511-15.4.172
NHS England (2018) Children’s Epilepsy Surgery Service (CESS), Available at: https://www.england.nhs.uk/publication/childrens-epilepsy-surgery-service-cess/ (Accessed: 14 January 2025)
Harris, WB et al (2022) Long-Term Outcomes of Pediatric Epilepsy Surgery: Individual Participant Data and Study Level Meta-Analyses. Seizure: European Journal of Epilepsy, 101, pp. 227–36, Available at: https://doi.org/10.1016/j.seizure.2022.08.010
O’Brien, J, et al (2020) Child and Parent Experiences of Childhood Epilepsy Surgery and Adjustment to Life Following Surgery: A Qualitative Study. Seizure, 83 pp. 83–88. Available at: https://doi.org/10.1016/j.seizure.2020.10.006
Erikkson, MH, et al., (2024) Long-Term Neuropsychological Trajectories in Children with Epilepsy: Does Surgery Halt Decline? Brain, 147(8) pp. 2791–2802, Available at: https://doi.org/10.1093/brain/awae121
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Harris, WB, et al., (2022) Long-Term Outcomes of Pediatric Epilepsy Surgery: Individual Participant Data and Study Level Meta-Analyses. Seizure: European Journal of Epilepsy 101: 227–36. https://doi.org/10.1016/j.seizure.2022.08.010
Great Ormond Street Hospital for Children, (no date), What is Epilepsy Surgery?, Available at: https://www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/surgery-epilepsy/ (Accessed: 19 February 2025)
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Thank you to the team at Bristol Royal Hospital for Children CESS and people affected by epilepsy for their help contributing to and reviewing this content.
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