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Epilepsy Surgery

preparing for surgery

Since November 2012 the NHS has altered the way epilepsy surgery for children is provided throughout the country. Four Children’s Epilepsy Surgery Services (CESSs) have been created to offer epilepsy surgery to many more children and young people with epilepsy. 

About a third of children presenting with epilepsy do not achieve good seizure control with antiepileptic medications and many of these children may be helped by epilepsy surgery. Epilepsy surgery can be highly successful in carefully evaluated infants, children and adolescents, bringing seizure freedom in about two thirds of cases.

Epilepsy surgery FAQs

Why would my child be considered for surgery?

Epilepsy surgery may be an option for children with epilepsy whose seizures are not well controlled on anti-epileptic medication. Surgical treatment is usually (but not exclusively) recommended for young people with a focal epilepsy.

We are able to offer children and young people the opportunity to be assessed to see whether surgery may be appropriate for them. Assessment for epilepsy surgery involves a number of tests and investigations and can take up to 18 months.

Alongside these investigations we hold regular multidisciplinary team discussions both here in Sheffield and with our colleagues in Birmingham.

Your child will be seen regularly in the Epilepsy Surgery Clinic to discuss the results of any tests and to discuss further investigations that might be necessary. Our ethos is to ensure that children and young people are involved in the decision-making throughout the epilepsy surgery work up as far as is possible.

What are the benefits of epilepsy surgery?
The aim of surgery is to remove the underlying cause of the seizures and therefore cure the epilepsy. However, every child is different and in some cases the cause of the epilepsy cannot be completely removed although it may be possible to reduce the frequency of the seizures in these cases.
What are the risks of epilepsy surgery?
All surgical procedures carry some form of risk. In our discussions we carefully assess the risks and possible benefits of the proposed surgery so that we can predict the risks for each child. The neurosurgeon will discuss the risk and benefits of any procedure with you and where possible your child before any decision is made to proceed with surgery.

Your child’s surgery will take place at Sheffield Children’s Hospital or if they are under six years of age at Birmingham Children’s Hospital.

What happens when my child is admitted for epilepsy surgery?

Your child will usually be admitted to hospital the day before the planned surgery when your child will be seen by the neurosurgeon, the anaesthetist and their consultant neurologist. Your child will have an opportunity to visit the ward before they are admitted if they would like to do so.

Following surgery your child may spend one night in the high dependency unit before they are transferred back to the ward.

Most children can go home between four and seven days after surgery, but this does depend on the type of surgery that has been performed.

How will my child feel when they leave hospital?

When they leave hospital your child may have less energy than usual for several weeks. Sometimes they may feel more easily upset or anxious. These feelings are usually a temporary reaction to having had major surgery and to any change in their seizure pattern.

A member of the epilepsy nurse team will support your child following discharge and will help integrate them back into school / college through a phased return programme.

What happens after epilepsy surgery?

Your child will be seen for regular reviews by the neurosurgical team who undertook the surgery. They will also continue to be seen in the epilepsy surgery clinics here in Sheffield.

Approximately three-six months after surgery your child will have a repeat MRI scan to see how well the brain is healing.

It is normally recommended that your child stays on the same dose of medication for a year after surgery. If they are seizure free after this time, then your neurologist will consider starting to slowly wean them off some of their medication. If this is successful then your child will continue to be weaned off all their medication.

You child will also have a repeat neuropsychometric assessment at one year and two years after their surgery. This is to look at the impact that surgery has had on their development, memory and social skills. This will be the same type of assessment that they had before surgery, so that we can compare the results.

Depending on the type of surgery that your child has had they may have follow-up care from the therapy team to ensure that they regain their strength and get back to their usual activities.

If your child were to have any ongoing behavioural and emotional issues following surgery, you will have ongoing care to assist with this.

What if my child is not suitable for epilepsy surgery?

Unfortunately, not every child who is evaluated for resective epilepsy surgery will be found to be a suitable candidate. It may be that after all the tests and investigations have been completed we are unable to find a particular area of the brain that causes your child’s seizures.

It is also possible that the part of the brain that is causing your child’s epilepsy is also responsible for important functions such as speech or movement. If this is the case, the surgeon may feel that by operating this would cause your child more harm than the epilepsy itself is causing.

If for any reason resective epilepsy surgery is not suitable for your child, there may be other options.

  1. To try other medications that may assist with seizure control.
  2. To consider the ketogenic diet. This is a special diet that has been proven to improve seizure control for some children.
  3. To implant a Vagus Nerve Stimulator. This is a procedure in which a small pacemaker-like device is surgically implanted under the skin on your child’s upper chest. The device delivers a small electrical current to the vagus nerve in the neck and the impulse continues up the nerve to the brain. This device has also been shown to improve seizure control for some children.

These options will be discussed in detail with you in clinic.

Tests and investigations

To decide if your child is suitable for epilepsy surgery they will need to undergo different tests and assessments. These investigations are designed to find out where in your child’s brain their seizures are starting and whether this area could be operated upon safely.

Assessments will also be done to assess your child’s memory, language, understanding (cognition). We will also be keen to assess the effect of seizures on their daily life, mood, behaviour and their social relationships.

These investigations will involve both outpatient and inpatient visits to the hospital and will be followed by a discussion of the results at our multidisciplinary team meetings.

Approximately 30-40% of children assessed for epilepsy surgery will be suitable to go forward for surgery. Once all the relevant information has been collated and discussed within the Children’s Epilepsy Surgery Service (CESS) we will be able to provide you with information about the options available to your child.

We try to ensure that all these tests and investigations are done as quickly as possible, but the timescale may vary depending on exactly what tests need to be done and where these will take place

Listed below are some of the tests and investigations that may be needed during your child’s assessment. These are provided at Sheffield Children’s NHS Foundation Trust unless specified otherwise.

EEG Electroencephalogram
During an EEG, electrodes are placed onto your child’s scalp using a special type of glue. The electrodes are then connected to the EEG machine which records the electrical activity in the brain. The type of EEG provides some information about where the epileptic electrical activity is coming from within the brain.
Video Telemetry Recording
A Video Telemetry Recording takes place in hospital (between a three and five day stay). As for a standard EEG the EEG electrodes are attached to your child’s head, however, this EEG recording is synced with a video recording. This is so that we can see exactly what happens when your child has a seizure and link this to the information gathered about where in brain the seizure starts.

We may reduce your child’s medication prior to their admission or during their admissions to ensure that seizures do happen but rest assured that their medication will be resumed prior to discharge.

Magnetic Resonance Imaging (MRI Scan)

A MRI scan is needed to see whether there is a structural cause for your child’s epilepsy. The MRI scanner can pick up the small abnormalities in the brain that may be causing the epilepsy. It is important that the child lies completely still during the scan as any movement can affect the quality of the scan and it may then have to be repeated.

For young children who would not be able to lie still we will do the scan with a general anaesthetic so that we get good pictures and to avoid delays in your child’s treatment.

Functional MRI scan (fMRI Scan)

This scan is very similar to an MRI scan. Your child needs to lie on the table in the scanner and while they are being scanned they will be asked to do some tasks. This may include saying words that appear on a screen, tapping fingers / thumb, or naming pictures that appear on a screen. This is because when the child is asked to do these tasks there is an increased flow of oxygen to certain specific areas of the brain. This helps us to see which areas of the child’s brain are controlling thoughts, speech, movement and sensation.

This scan might be needed if the area where the epilepsy is coming from is very close to these important areas of brain function.

Positron Emission Tomography (PET Scan)

This scan uses a radioactive substance (tracer) that is injected into your child to help us understand how their brain is working. Usually, the child will have an EEG at the same time enabling us to compare the images to the EEG done without the radioactive tracer.

The PET scan is another test used to show us which part of the brain is causing the epileptic activity because the part where the seizures start does not soak up as much of the tracer as the normal brain.

SPECT STUDIES Single-photon emission computed tomographye

There are two types of SPECT scan. One is called an inter-ictal scan which is done when your child HAS NOT had a seizure; this is done as an outpatient. The other is called an ictal SPECT which is done after the child has had a seizure and is done as an inpatient. Comparison of the two scans shows the different areas of blood flow in different colours. Once again this test is used to locate seizure onset.

Your child will be given an injection of a radioactive dye within seconds of a seizure starting and this will be taken up by the brain. The dye highlights different areas of blood flow within your brain. Usually, blood flow is higher in that part of the brain where the seizures start.

Neuropsychometric Assessment

Every child who is thought to be suitable for epilepsy surgery will have a neuropsychology assessment. This assessment is carried out as an outpatient over one or possibly two visits where your child will be asked to complete different tasks. Some will be related to your child’s memory, some about written skills, some about speech skills and some about numeracy.

As parents / carers you will also have to fill in a questionnaire about how epilepsy has affected your child.

The purpose of this assessment is to see whether the area within your child’s brain where we are considering operating is responsible for any of these important functions. This assessment is also helpful in telling us if the epilepsy has caused your child any memory or learning problems. This assessment can be very helpful in helping to gain extra support for your child in school if difficulties are identified.

Neuropsychiatry Assessment
This assessment is important as it helps us (and you as parents / carers) to understand the effects that epilepsy is having on your child. It is common for children with epilepsy to have some emotional and behavioural problems and a psychiatrist with experience in epilepsy surgery will help identify such difficulties. They may also be able help with managing any such difficulties whether or not your child goes on to have surgery or not.
Therapy Assessment
Depending on the type of surgery that your child may need and on their age it might be helpful to have a therapy assessment of their speech and mobility skills both before and after surgery. This is carried out by our therapist as an inpatient just before your surgery. We undertake this assessment because after surgery your child may feel weaker for a period of time and need some support.
Invasive EEG Monitoring

Invasive EEG monitoring is a surgical procedure. There are various types of invasive monitoring and include: monitoring in which EEG electrodes are placed directly on the surface of the brain (subdural grids or strips); or depth electrodes which are small multi contact probes inserted into specific areas of the brain via small burr holes made in the skull.

Your child may require invasive monitoring to determine more precisely where the seizures are coming from. While the invasive monitoring is taking place the neurosurgeon can map out exactly which part of your child’s brain is responsible for speech, memory and movement.

Invasive monitoring takes place in hospital under a general anaesthetic. Following placement of the electrodes your child is then moved back to the ward and connected to the EEG machine. Once the electrodes / probes have been recording for a sufficient length of time to ensure that we have gathered enough information, your child will return to the theatre to have them removed.

Your child may then have their epilepsy surgery straight afterwards or this may be done later as a separate operation.

Types of surgery

  • Focal resection – a focal resection is recommended when the multi-disciplinary team is sure that the epilepsy is originating in one particular part of your child’s brain and that removing it will not cause your child any other problems. During this procedure a small part of the brain will be removed. There are two names for this type of surgery, temporal resection and extra-temporal resection:
    • temporal resection – this means your child requires surgery in one of their temporal lobes
    • extra-temporal resection – surgery to any other part of the brain (there are several different extra-temporal resections)
  • Hemispherotomy – this type of surgery disconnects one half of the brain from the other half to stop seizures from starting from a damaged part of your child’s brain. Children who already have a weakness on one side of their body may have this procedure. This is because they already have a pre-existing weakness on the side of the body which the planned surgery is likely to make weak.
  • Corpus callosotomy – this surgery separates the two hemispheres of the brain, and does not involve removing any brain tissue. This type of surgery is usually used for generalised seizures, and in particular drop attacks which are caused by the rapid spread of seizure activity from one side of the brain to the other. This surgery may also be recommended for children who have cyclonic seizures that affect the whole body.

Clinics

Clinics are held at the Ryegate Children’s Centre and Northern General Hospital.

To change or query appointments call 0114 305 3691.

Referrals

Referrals onto the Epilepsy Surgery Programme are co-ordinated by Lisa Cook, Epilepsy Nurse Specialist.

If you would like to discuss if epilepsy surgery may be suitable for your child please speak to your child’s consultant or contact the Neurology Team at the Ryegate Children’s Centre.

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