These pages are about surgery in the UK. If you are looking for information about surgery in another country, please contact your local epilepsy organisation.
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 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.
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
Your CESS centre will give you advice about caring for your child once you leave hospital. The centres have agreed on the following general guidelines for the things they are most commonly asked 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 your child’s surgeon has used. The advice is only to use baby shampoo and no other hair products 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 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.
There are some concerns about the risk of pneumocephalus ((bubble of air or gas) within the brain cavity following any brain surgery. There is very little evidence about how soon you can fly and the risk of pneumocephalus following epilepsy surgery. It is important to discuss this with your child’s surgeon or epilepsy surgery specialist nurse practitioner. Most CESS centres agree that if you want to fly less than 2 weeks after surgery your child would need a scan or X ray to check for air or gas. Shorter flights are considered safer than longer ones initially. All the centres advise air travel has very little or no risk after 6 weeks.
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.
Yours 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
If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.
Epilepsy Action wishes to thank Prof. Richard Appleton, honorary professor in paediatric neurology and Dr Tim Martland, consultant paediatric neurologist at Royal Manchester Children’s Hospital and Lead Clinician for NorCESS for their contributions.
Prof. Appleton and Dr Martland have declared no conflict of interest.
This information has been produced under the terms of The Information Standard.
- Updated May 2017To be reviewed May 2020