Epilepsy Surgery - Northern Children's Epilepsy Surgery Service (NorCESS)
We know that coming to hospital for an operation can be scary for parents and children alike, and we understand it might be an especially difficult decision to have brain surgery. We’ve put together some information to give you a better understanding of what to expect.
If you’re unsure of anything, or have more questions, please feel free to contact the team.
What is epilepsy surgery?
Epilepsy surgery is an operation on the brain (called a neurosurgical operation) to try to stop or reduce the number of your child’s seizures (also called fits). Surgery is the only thing that might actually cure your child’s epilepsy.
There are different types of epilepsy surgery that can be done, and the type of operation will depend on your child’s epilepsy.
Why does my child need surgery?
Surgery will be considered if:
- Your child has epilepsy that has been difficult to control with anti-epileptic medications (also called anticonvulsants)
- At least two or three different anti-epileptic medications have not stopped or significantly reduced the number of your child’s seizures
- A cause for your child’s epilepsy has been found to come from one part of their brain
After talking with your Neurologist and Neurosurgeon your child may need further tests before any surgery can be considered.
What tests does my child need?
They will need a special type of EEG called video-telemetry, an MRI brain scan and probably a neuropsychology and psychiatry assessment. The neuropsychology test assesses your child’s concentration, short-term memory and learning abilities, and the psychiatry assessment assesses your child’s feelings and mood.
Based on the results of these detailed tests, your child’s Neurologist and Neurosurgeon will then talk with you about whether your child is suitable for epilepsy surgery, as well as the type of surgery and all the possible risks and benefits.
Having any kind of surgery on the brain is a big decision to make. You will probably have many questions or concerns that you will want to discuss before you are able to make a decision. The Neurologist and Neurosurgeon will always answer your questions and will help you to make a decision.
How successful is epilepsy surgery?
This depends on the underlying cause of your child’s epilepsy, where the seizures are coming from and the type of surgery they may undergo. Generally, 50% to 75% of those who have epilepsy surgery will have their seizures stopped or greatly reduced. The results are better if your child’s seizures come from the part of the brain called the temporal lobe.
What should I expect?
Alder Hey is a specialist children’s hospital which means your child can have all their tests and their epilepsy surgery here. There are a number of different types of surgery for epilepsy. The type of surgery will depend on your child’s epilepsy. The most common type of surgery is the removal of a small part of the brain which is the underlying cause of the epilepsy. This part is usually called the ‘focus’. It is sometimes called the ‘lesion’ –which is the medical word for abnormality. These are our procedures:
- Temporal lobectomy – either the entire or most of the temporal lobe is removed.
- Cortical resection – an abnormal area of brain tissue is removed. This may be anywhere in the brain known as the frontal, temporal, parietal or occipital lobes. Another word for resection is removal. Resection means the removal of the lesion or abnormality in the brain that is causing the epilepsy.
- Hemispherectomy or hemispherotomy – sometimes used to treat very severe epilepsy in children with damage to the whole of one side of the brain. The whole damaged side of the brain is removed.
- Corpus callosotomy – this procedure is rarely done. It is particularly done in children with very severe epilepsy and who have lots of ‘drop fits’ each day. These ‘drop fits’ are called atonic or tonic seizures. The operation involves cutting the fibres that connect the two halves of the brain.
- Sub-pial resection – thin cuts are made in the motor areas of the brain that do not affect the motor function but do prevent the spread of seizures. This operation is rarely done.
- An internal also called ‘invasive’ type of EEG. In this operation a special ‘grid’, ‘strip’ or ‘depth’ electrode is placed directly on to the surface of the brain which will help the doctors know exactly where your child’s seizures are coming from. This type of EEG only needs to be undertaken in some children before they have an operation to remove a small part of their brain.
Epilepsy Action have recently made a film about CESS services, some of which was filmed at Alder Hey:
What should I expect before the operation?
Your child will be usually be admitted to the Neurosurgical ward at Alder Hey the day before the operation. The nurses will ask your details, one of the doctors will ask you some questions about your child’s health, examine your child and take blood tests before the operation. An anesthetist will also examine your child to make sure they are well enough for the operation. Your child’s Neurosurgeon will explain the risks and benefits of the operation. You will then be asked to sign a consent form to say you have agreed for the operation to take place.
Please bring all of your child’s medication with you when you come to hospital.
What are the risks of this operation?
- Operating on the brain carries risks which can be frightening to read about. These include neurological damage (a stroke), haemorrhage (bleeding) that may require blood transfusion, infection either in the brain or of the wound and leakage of the fluid (called the cerebrospinal fluid – CSF) that surrounds the brain and spinal cord
- All children that have this type of operation will need a general anaesthetic which carries a very small risk. All our anaesthetists here at Alder Hey work specifically with children and have a lot of experience
- The operation may also result in worsening of your child’s seizures for a while after the operation. It is important for you to know that these risks are very low. All of these risks and complications will be discussed with you before your child’s operation. You will also be able to ask any questions. It is important that you have a good understanding of what is involved before you decide to go ahead with surgery
- The operation usually lasts between four and six hours but sometimes it may take longer
What happens immediately after the operation?
- Your child will return from the operating theatre to the high dependency unit (called the ‘HDU’) on the neurosurgical ward. Your child will be very closely monitored following surgery. Your child will be attached to several monitors. They will have a drip, a tube going into their stomach through their nose to help with giving medication and feeding (called a nasogastric tube). They will also have a tube going into their bladder to drain their urine. Your child’s eyes may swell up and their face may appear slightly bruised but this will usually resolve after a few days.
- Your child may also be sleepy for the first couple of days following the operation. Rarely, your child may have some weakness affecting one side of their body but this usually improves after a few days.
- Once your child has started making a recovery they will be moved out of the HDU into the general neurosurgical ward. Some children may have a few seizures for the first week after surgery. However, this does not necessarily mean that the surgery has not worked because it is more likely that these seizures will be linked to the actual surgery.
- Your child will be seen once or twice a day by the doctors on the ward until it is felt that they can go home. Your child may need a little assistance with movement depending on the type of surgery they have had. If this is the case, then your child may be seen by the physiotherapist, and also by the occupational therapist.
What happens after the operation?
When it is felt that your child is well enough, they will be allowed to go home. The stitches your child has had are dissolvable so they should not need to be removed. The stitches can sometimes take up to 90 days to dissolve altogether, but if you are concerned you should ring the Neurosurgical ward at Alder Hey.
You will be given an appointment to come back and see your Neurosurgeon usually within four to six weeks after discharge.
What about my child’s anti-epileptic medication?
Your child should continue to take their anti-epileptic drugs for at least six months after surgery. Your child’s Neurologist will advise you when would be the best time to start to slowly reduce your child’s anti-epileptic medication.
When can my child go back to school or play sports and games?
This will depend on your child’s operation and how quickly they have recovered. Your child’s Neurosurgeon will always advise you on this matter.
How will I know if the surgery has been successful?
For some children, surgery will be felt to have been successful if it has completely stopped all seizures. For others, it may mean reducing the number or the severity of seizures. Usually six to nine months is needed after surgery to fully decide how successful surgery has been.
Is there anywhere else I can get information?
There is more information available on the Eplilepsy Action website.