Epilepsy brain surgery for children Contents          

Introduction Referral to a specialist centre Tests before epilepsy brain surgery Types of epilepsy brain surgery What happens during epilepsy brain surgery After epilepsy brain surgery Success rates for epilepsy brain surgery Risks of having epilepsy brain surgery Other types of epilepsy surgery Further information and support

Introduction In England, around 400 children each year could benefit from epilepsy brain surgery. However, in recent years, only around 100 children each year have had surgery on their brain to try to treat their epilepsy. From November 2012, following a successful campaign by Epilepsy Action, a new Children’s Epilepsy Surgical Service (CESS) will provide epilepsy brain surgery for many more children with epilepsy in England. The CESS is being provided through these four CESS centres.  Birmingham Children’s Hospital  Frenchay Hospital, Bristol  Great Ormond Street Hospital for Children (GOSH), partnered by Kings College Hospital, London  Liverpool’s Alder Hey Children’s Hospital with Central Manchester University Children’s Hospital These centres will treat children from all over England, not just those in their local area. Epilepsy brain surgery is done to help to stop a child’s seizures, or reduce the number of seizures they have. This information looks at which children might benefit from epilepsy brain surgery. It also looks at the tests a child might have, types of surgery and where to find further information.

Referral to a specialist centre The National Institute for Health and Clinical Excellence (NICE) is part of the NHS. It is the independent organisation responsible for providing national guidance on treatments and care for people using the NHS in England and Wales. The guidance is to help healthcare professionals, patients and their carers to make decisions about treatment and healthcare.

NICE says that children with epilepsy should have regular reviews of their epilepsy and treatment. At their review, children in any of the following groups should be referred to a specialist centre for re-assessment of their epilepsy. At this point, they may be considered for epilepsy brain surgery.  Children with behaviour problems, or who have lost any skills they previously had  Children with an epilepsy syndrome  Children under two years of age  Children who have not had their seizures controlled within two years of the diagnosis of epilepsy  Children who have tried two epilepsy medicines in the correct doses but are still having seizures  Children who have unacceptable side-effects from their epilepsy medicines  Children who have some abnormality seen on a brain scan  Children who have psychological or psychiatric conditions  Children who have no clear diagnosis of their seizure type or epilepsy syndrome  Children with Sturge-Weber syndrome  Children with Rasmussen’s syndrome (also called Rasmussen’s encephalitis)  Children with hypothalamic hamartoma  Children with hemispheric syndromes (syndromes that affect one half of the brain) Epilepsy Action has more information about NICE, Sturge-Weber syndrome, Rasmussen’s encephalitis, hypothalamic hamartomas and treatment for epilepsy.

Tests before epilepsy brain surgery Before your child is accepted for surgery the epilepsy specialist, and a number of other specialists at the CESS centre will thoroughly assess your child. This is to see if they might benefit from epilepsy brain surgery. During the assessment, the specialist is likely to order various tests, which may include:  Electroencephalogram (EEG)/video telemetry  Computed tomography (CT scan)  Magnetic resonance imaging (MRI scan)  Functional MRI scan (fMRI)  Positron emission tomography (PET scan)  Single-photon emission computed tomography (SPECT scan)  Magnetoencephalography (MEG scan)  Neuropsychology tests  Neuropsychiatry tests Electroencephalogram (EEG)/video telemetry The EEG tells the doctors about the electrical activity in the brain. During the EEG, a technician places harmless electrodes on the scalp, using a special glue or sticky tape. The electrodes are then connected to the EEG machine, which records the electrical signals in the brain on a computer. A video recording might be done at the same time. This is called video telemetry and will be done in hospital. In this way, if your

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child has a seizure, doctors can see exactly what happens. An EEG/video telemetry can be done while your child is awake or asleep, or both. Epilepsy Action has more information about EEGs and video telemetry. Computed tomography (CT scan) This is a type of X-ray that shows the structure of the brain. It wouldn’t show if your child has epilepsy. However, it might show if there is an abnormality that could cause epilepsy. However, CT is now an old investigation and has been replaced with magnetic resonance imaging (MRI). Epilepsy Action has more information about CT scans. Magnetic resonance imaging (MRI scan) The MRI uses radio waves and a magnetic field, rather than X-rays. Like the CT scan, it can show if there’s a structural cause for the epilepsy. The MRI is more powerful than the CT scanner, so it can pick up small or subtle abnormalities that the CT scanner can’t find. Epilepsy Action has more information about MRI scans. Functional MRI scan (fMRI scan) This is similar to having an MRI scan but, during the scan, your child would be asked to do something. For example, they might be asked to tap their thumb against their fingers. Or they may be asked to look at pictures, or answer questions, on a computer screen. These activities increase the flow of oxygen-rich blood to a particular part of the brain. This type of MRI scan will help to show exactly which part of the brain manages important tasks such as thought, speech, movement, and sensation. More information about functional MRI scans can be found on the Psych Central website: www.psychcentral.com 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 any abnormalities. More information about PET scans can be found on the NHS UK website: www.nhs.uk 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 goes to their brain. The colours show how much blood flow is in each part of the brain. Usually, blood flow is higher in the part of the brain where seizures start. There are two sorts of SPECT scans. One is the inter-ictal SPECT scan, which is done between a child’s seizures (‘inter’ means between and ‘ictal’ means a seizure). The other is the ictal SPECT scan, which is done just after a child has had a seizure.

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More information about SPECT scans can be found on the GOSH website: www.GOSH.org.uk Magnetoencephalography (MEG scan) This is a new 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, and at what point in time it was active. Your child won’t feel any differently afterwards, and they won’t need to change their activities or rest after their scan. Neuropsychology tests These tests show if your child has any memory and learning problems. The tests may take up to eight hours, split into different sessions and involve a number of games and puzzles. They can show whether the part of the brain that needs removing is responsible for any functions that other parts of the brain can’t take over. This is to try to make sure your child would not have problems after surgery that they didn’t have before. More information about neuropsychology tests can be found on the GOSH website: www.GOSH.org.uk Neuropsychiatry tests A psychiatrist with experience of epilepsy brain surgery would see you and your child, as part of the initial assessment. The psychiatrist will consider whether your child has emotional and behaviour problems, which can be common in children with epilepsy. These problems often cause distress and can interfere with school and family life. But they can usually be treated. The psychiatrist will advise you about whether your child will need any treatment for emotional or behaviour problems. This will be available whether, or not, your child goes on to have surgery. The psychiatrist will also be one of the people who checks with you what your aims and expectations are for surgery. More information about neuropsychiatry tests can be found on the GOSH website: www.GOSH.org.uk Other assessments Other types of assessment might be organised, depending on the type of epilepsy, and the type of problems, your child has. These may include the following assessments.  Speech and language  Development  Vision, particularly their peripheral vision  The need for occupational therapy  The need for physiotherapy More information about other assessments can be found on the GOSH website: www.GOSH.org.uk

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What you can expect if your child has epilepsy brain surgery The four CESS centres have been selected to provide the highest standard of care for you and your child. They each have an expert team of surgeons, doctors, healthcare professionals, and specialist facilities needed for epilepsy brain surgery. The centres need to make sure you and your child have access to the following support and services. This is during your assessment, as well as before, during and after the surgery.  A chance to visit the centre and meet the team who will do the operation before the surgery takes place.  Family support for the period in the hospital in a child friendly environment with suitable toys, books and activities appropriate for your child.  A management plan, that is agreed with you and your child, and shared with you both, on an ongoing basis. This plan will include details about your child’s follow up care, monitoring and review.  A named lead doctor or healthcare professional responsible for coordinating your child’s care. They will act as a link between you and the people treating your child.  24 hours a day access to a member of the team for advice, information and support.  Access to an epilepsy specialist nurse.  Clear information about your child’s condition, which should include o A description of their epilepsy o How their epilepsy will be managed o Medicines and other treatments they might receive o How you and your child get the best from their treatment o Emotional and behaviour support o Access to appropriate patient support group and charities o Contact details of your child’s named nurse

Types of epilepsy brain surgery There are many different types of epilepsy brain surgery. The type your child might have depends on their type of seizures, and where the seizures begin in their brain. Here are some of the most commonly performed types of epilepsy surgery. Focal resection This is done when surgeons are sure which part of the brain the seizures start in. Your child would have a small part of their brain removed. Although this sounds worrying, the surgeon would only take away damaged parts that your child doesn’t need. 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 an extra-temporal resection. Epilepsy Action has information about the different lobes of the brain. Multiple subpial transection This surgery is not very common but is performed when it’s not possible to remove the part of the brain that’s causing the seizures. The surgeon will make a series of cuts to separate the damaged part of the brain from the surrounding area. This stops seizures moving from one part of the brain to other parts. 5

Corpus callosotomy This is for children who have sudden generalised seizures, such as drop attacks and some myoclonic seizures. Drop attacks is the name given to the seizure types called ‘atonic’, and ‘tonic’. This surgery separates the two hemispheres (halves) of the brain. It may be done if there are severe seizures that start in one hemisphere, and spread to the other. Hemispherectomy This is major surgery to separate, or remove, one half of the outer layer of the brain from the other. It is performed in children who have seizures because one half of their brain is badly damaged or not working properly. Sometimes the hemisphere is not removed but just completely disconnected from the rest of the brain. This is called ‘hemispherotomy’. More information about different types of epilepsy brain surgery can be found on the GOSH website: www.GOSH.org.uk

What happens during epilepsy brain surgery What happens during brain surgery for epilepsy will depend on the type of surgery. Most surgery involves making a small opening in the skull to get to the brain. They may remove some bone. Your child would be put to sleep with a general anaesthetic. Rarely, the surgeon may wake them up during part of the operation to locate the part of their brain that controls language and movement. The surgeon will be able to explain this to your child. This is only usually done in children older than 12 years. After the surgery, the bone is replaced and fixed to the skull for healing. Most epilepsy brain surgery takes at least four to six hours.

After epilepsy brain surgery After surgery, your child’s head would be swollen and painful. They would need to take painkillers for a few days. The pain and swelling usually involves the face and eyes. It quickly settles after a few days or a week or two. Your child would need to rest and relax in the first few weeks after the surgery, and gradually become more active. It’s usual for children to stay off school for around two to three months. Children should not play any contact sports for about four to six months. Generally, children continue to take epilepsy medicine for between six months and two years after the epilepsy surgery. The exact time will vary, depending on whether your child has stopped having seizures completely. It will also depend on what your child’s epilepsy specialist and you think is best for your child. They may be able to reduce, or even stop the medicine after that. Your epilepsy surgery team will want to keep in touch, to see how your child is doing. Ideally, this will be for several years after the surgery.

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Success rates for epilepsy brain surgery The success rate depends on the type of surgery the child has had. Many children stop having seizures after this surgery. Children who have a temporal resection usually do better than those who have an extra-temporal resection. If they do still have seizures, they usually have a lot fewer than before. If seizures do continue, most children will usually continue to take their epilepsy medicine.

Risks of having epilepsy brain surgery The risks depend on the type of epilepsy brain surgery. Here are some possible risks. Memory problems The temporal lobes handle memory and language. This means that any surgery on these parts of the brain can cause difficulties in remembering, understanding and speaking. The memory problems can be for things that the child has seen, called ‘visual memory’, or for things the child has heard. This is called ‘verbal memory’. Epilepsy Action has more information about memory problems. More seizures than before Cutting the connections between the two hemispheres (sides) of the brain in corpus callosotomy stops seizures spreading from one hemisphere to the other. However, it doesn’t stop all the seizures, only the ‘drop’ seizures. In fact, some children may have more focal (partial) seizures, but they are less severe. Visual symptoms After hemispherectomy (where the outer layer of one half of the brain is removed), a child’s vision may be reduced or they may have double vision. This is usually temporary. They may also have some difficulties with their peripheral vision. This may be temporary or permanent and will depend on how much of the brain has been removed. One-sided paralysis After hemispherectomy, a child may have limited use of one side of their body. This is called a hemiparesis or hemiplegia. Physiotherapy and occupational therapy can help with this. Behaviour problems Some children may have had behaviour problems, or problems with communicating or having relationships with other people before surgery. Epilepsy surgery itself will probably not help these problems. It is even possible that in a very few children, these problems may become a little worse.

Benefits and risks Despite the tests before epilepsy brain surgery, it’s not always possible to predict what the risks are for each child. However, following pre-surgery tests the doctors will be able to make an educated assessment. They will be able to fully discuss this with you before any decision about surgery is made. Doctors will only go ahead with epilepsy brain surgery if the tests show that the benefits are likely to be higher than the risk of complications. 7

More information about risks of epilepsy brain surgery can be found on the Mayo Clinic website: www.mayoclinic.com

Other types of epilepsy surgery If a child is not suitable for epilepsy brain surgery, they may be considered for other types of surgery. Vagus nerve stimulation (VNS) Vagus nerve stimulation (VNS) therapy uses a small generator that is implanted under the skin below the left collarbone. This is connected to a lead with two coils at one end. These coils are wrapped around the vagus nerve in the left side of the neck, under the skin, during a small operation. Epilepsy Action has more information about VNS. Deep brain stimulation (DBS This surgery involves having a DBS system fitted. The DBS system has three parts.  A lead – this is a thin, insulated wire. It is inserted through a small opening in the skull. It is placed in the part of the brain where seizures happen.  An extension – this insulated wire is passed under the skin of the head, neck, and shoulder. It connects the lead to the neurostimulator.  A neurostimulator – this is a small device, similar to a heart pacemaker. It is usually placed under the skin near the collarbone, lower in the chest, or under the skin of the stomach. DBS will only be considered for those children who can’t have their seizures controlled by epilepsy medicines, the ketogenic diet or other types of epilepsy surgery. The ketogenic diet is a special high fat diet that helps to control some children’s seizures. More information about DBS for epilepsy is available on the NICE website: www.nice.org.uk Epilepsy Action has more information about the ketogenic diet.

Further information and support Birmingham Children’s Hospital Steelhouse Lane, Birmingham, B4 6NH Tel: 0121 333 8506 www.bch.org.uk Frenchay Hospital, Frenchay Park Road, Bristol, BS16 1LE Tel: 0117 970 1212 www.nbt.nhs.uk Great Ormond Street Hospital, Great Ormond Street, London, WC1N 3JH Tel: 020 7405 9200 www.gosh.nhs.uk

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Alder Hey Children's Hospital, Eaton Road, West Derby, Liverpool, L12 2AP Tel: Tel: 0151 228 4 www.alderhey.co.uk If you would like to find out if epilepsy surgery could help your child, please contact their epilepsy nurse or specialist. If you have already been told that surgery could help your child, the centre where their surgery is being planned will be able to give you more information. They will also be able to answer any questions you have. Epilepsy Action’s online community, forum4e (www.forum4e.com) has some members who have had epilepsy surgery. They will be able to give you information about what to expect when surgery is being considered.

About this publication This information is written by Epilepsy Action’s advice and information team, with guidance and input from people living with epilepsy and medical experts. If you would like to know where our information is from, or there is anything you would like to say about the information, please contact us. Epilepsy Action makes every effort to ensure the accuracy of information but cannot be held liable for any actions taken based on this information. Date: January 2013; Due for review: January 2015 Code: F083.01

Our thanks Epilepsy Action wishes to thank Dr Richard Appleton, consultant paediatric neurologist at Alder Hey Children’s Hospital, Liverpool, UK, for help in reviewing this information. Dr Richard Appleton has no conflict of interest to declare.

Your support We hope you have found this fact sheet helpful. As a charity, we rely on donations to provide our advice and information. If you would like to make a donation, here are some ways you can do this.  Visit www.epilepsy.org.uk/donate  Text ACT NOW to 70700 (This will cost you £5 plus your usual cost of sending a text. Epilepsy Action will receive £5.)

 Send a cheque payable to Epilepsy Action to the address below. Did you know you can also become a member of Epilepsy Action from less than £1 a month? To find out more, visit www.epilepsy.org.uk/join or call 0113 210 8800. Epilepsy Helpline Freephone 0808 800 5050, text 0753 741 0044, email [email protected], tweet @epilepsyadvice 9

Contact details Epilepsy Action, Gate Way Drive, Yeadon, Leeds LS19 7XY, UK, +44 (0)113 210 8800. A registered charity (No. 234343) and company limited by guarantee (No. 797997) in England. © Copyright Epilepsy Action

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