Deep brain stimulation for epilepsy  

 What is deep brain stimulation for epilepsy? 

Deep brain stimulation (DBS) is a treatment for epilepsy. It helps to reduce seizures by sending small electrical signals to specific parts of your brain. Small, gentle electrical pulses help calm the brain when it starts acting in a way that causes seizures.

How does deep brain stimulation for epilepsy work? 

DBS involves having an operation. You’ll have anaesthetic during the operation – a medication to temporarily stop you from feeling pain. You may have a metal frame over your head during the operation. This is called a stereotactic frame. It helps keep your head still.  

During the operation, one or more small holes will be drilled into your skull. This is so that electrodes can go on specific parts of your brain. You may need a scan before the operation. For example, a magnetic resonance imaging (MRI) scan. This will help your surgeon (the doctor who does your operation) target exact areas of your brain. 

The electrodes are connected by wires to a small electrical stimulator. This is also known as a pulse generator or neurotransmitter. The device is placed under the skin on your chest. The wires go under your skin, behind your ear and down your neck. The electrical stimulator controls the strength and number of electrical pulses that go to the brain.  

You’ll have a hand-held programmer about the size of a mobile phone. You can use this to turn the DBS on and off. You can also check battery status, adjust the programming and log seizures. If you think that a seizure is about to happen, you can use the programmer to start the DBS treatment. 

Your doctor or nurse will explain how to use the programmer. They will show you how to record a seizure and change the batteries. If you have any questions, or you’re not sure, always ask them to explain. It’s important you understand how to use and care for the programmer.

 Who can have deep brain stimulation? 

You may be asking yourself, how do I know if deep brain stimulation is for me? DBS is usually only an option when other treatments have not worked or are not suitable.  

At the moment, DBS is only available in the UK to adults over the age of 18. But researchers are currently testing how well DBS works for children under the age of 18. 

 Your doctor may suggest DBS if: 

• Your epilepsy is severe and you have regular seizures. 
• Your epilepsy has not responded well to at least two different anti-seizure meds. For example, your seizures haven’t stopped even after taking meds. This type of epilepsy is sometimes called drug-resistant or refractory epilepsy. 
• Brain surgery is not a safe or suitable option for you. 

A team of epilepsy specialists will look at your individual situation and decide if you’re suitable for DBS. This is called the Refractory Epilepsy Specialist Clinical Advisory Service (read more about it in the section below). If they think DBS is a suitable treatment for you, your doctor will talk to you about the process. They will explain the risks and benefits, and any possible side effects. You will then have to agree if you want the operation to go ahead.  

Talk to your doctor if you have any questions about DBS. 

The Refractory Epilepsy Specialist Clinical Advisory Service  

There is a special service in the UK which doctors use to help them make decisions about people with very hard to treat (complex) epilepsy. It’s called The Refractory Epilepsy Specialist Clinical Advisory Service (RESCAS). It’s a way for your doctor to get advice from expert health professionals about your treatment and care. A bit like getting a ‘second opinion’. 

The RESCAS involves specialist health professionals from across the UK, including doctors who work with children with epilepsy. They regularly meet to talk about patients who have epilepsy that is hard to treat (drug-resistant epilepsy). They talk about possible treatment options and decide together what recommendations to make. 

Remember, this is an advice service for health professionals. Decisions about your care will still be made between you, your parents or carers, and your normal doctor.  

Any neurology centre in the UK can send details about a child or young person's epilepsy to the RESCAS for advice. Talk to your doctor if you’d like to know more about it or if you have any questions.

Can deep brain stimulation cure epilepsy? 

DBS reduces seizures and can make them less severe. But it will not cure epilepsy. How well DBS works will also vary from person-to-person. It also depends on the type of seizures you have. 

What are the side-effects of deep brain stimulation for epilepsy? 

Like any type of surgery, DBS comes with its own risks and possible side-effects. How you respond to DBS will vary from person-to-person. You may not get all the side effects listed here. But it’s important to understand how DBS could affect you.

Some of the possible side effects of DBS include: 

• Memory problems 
• Feeling very low (depression) and having anxiety 
• Getting an infection 
• Bleeding during the operation (haemorrhage). 

Talk to your doctor if you’re getting side effects after having DBS. You may be able to manage some of them by adjusting the settings on the programmer. Your doctor or nurse will be able to help you do this. They may also suggest other things you can do to help manage your side effects. 

Other useful organisations  

Mind 

www.mind.org.uk 

A charity that supports people with their mental health.  

NHS website 

www.nhs.uk 

Information about epilepsy and different tests and scans. 

NICE website  

www.nice.org.uk  

Up-to-date guidelines for children and young people with epilepsy.