Epilepsy Surgery Programme FAQs

You can be considered for epilepsy surgery if:

• you have tried two or more anti-epileptic drugs and they have not stopped or significantly reduced your seizures

• you are experiencing focal seizures (seizures that begin in a specific area of the brain).

If you think you meet these criteria, speak to your GP or local neurologist.

It depends on when you were enrolled on the programme. A member of the team will be able to provide you with a projected timing.

Generally speaking, it may take up to one year from the initial assessment to surgery. Your journey with us may be longer if the epilepsy generator is difficult to find and a stereoEEG is deemed necessary.

No, unfortunately these tests have to be performed within our trust to ensure we get the necessary information to gather a full picture.

No, as you may undergo a medication reduction / withdrawal to provoke a seizure and you will need to be monitored during this time.

Please bring items to keep you entertained whilst you are in the room. TV and Wifi are available.

Normally it is a two-week admission but you may be asked to stay longer, until sufficient data have been collected.

3T MRI and fMRI

Used to obtain very detailed pictures of the brain and its functional areas. It usually takes 30 to 45 minutes and you can go home straight after.

PET

It uses a dye that can highlight brain regions that use energy in an abnormal way. This is done in Cheltenham.

SPECT

A dye is injected at the beginning of a seizure and remains in those areas most involved in a seizure. This test requires an admission.

MEG

This is a complex kind of brain activity scan and requires travelling to Birmingham.

WADA test

It is done only in uncommon cases where it is unclear where language and memory functions areas are. The procedure involves temporarily putting asleep one side of your brain by injecting an anaesthetic  medication in your groin, while running some tests. It requires an admission, but you can go home the same day.

EEG

It is a painless procedure where small probes are attached to the scalp for analysing the brain’s activity by looking at its electrical waves. It usually takes up to one hour.

VT, or video EEG telemetry

This is like a normal EEG but with a camera recording. It lasts longer, typically one or two weeks. You will stay in a dedicated comfy bay room with bed, chair, TV, Wifi and en-suite bathroom. Friends and family can come and visit.

If seizures are not very frequent, medications may be reduced to allow seizures to happen. It is important to stay in the room as much as possible, to avoid missing a seizure. Skilled nurses will maintain your safety in case of seizures.

sEEG, or stereo-EEG

When information from normal EEG are inconclusive, some small probes are placed into specific areas of your brain with an ultra-precise robotic arm. It requires an admission similar to the VT investigation, but may rarely require to stay in longer.

In selected cases, the electrodes can also be used to disrupt the seizure network (RFTC) with a temporary beneficial affect on seizures frequency. Although temporary, this effect would give precious information on the chances of a successful surgery.

At the end of the recording, electrodes will be removed at the bedside and you can go home next day.

Neuropsychology

This assessment takes three to four hours to complete and involves completing a variety of paper and pencil and computerised tests, to evaluate brain functions such as concentration, language and memory.

It will show areas of strengths and weakness in your thinking and memory which can be associated with certain seizure generators. It can also show if the part of your brain that is likely to be removed is responsible for any functions that other parts of your brain cannot take over. This helps predict whether your daily reasoning would be at risk with surgery.

Neuropsychiatry

This assessment would clarify if your epilepsy is causing any other problems that you may not be aware of. 

The psychiatrist will be able to tell if surgery may help these problems as well, and if you would need any extra support after surgery (for example, mood swings and anxiety can temporarily effect 1 in 5 people after surgery).

You will also be able to discuss the changes you hope for as a result of surgical treatment.

The hospital stay varies from person to person, but the average length of stay is five days.

The first follow-up will be with your GP / local practitioner nurse, to make sure the wound is healing well and there are no outstanding issues.

You will be contacted by our specialist nurses one month after surgery and will see the neurosurgeon at 6-8 weeks post-operatively. Your neurologist will continue to see you at 3, 6, 9, 12 months.

Post-operative imaging and neuropsychologist / neuropsychiatry reviews are also part of post-operative assessment, but their timeframes may change from case to case.

It is normal to feel tired. You can expect to have some pain and nausea/vomiting initially after surgery but these will go within a few days, and the pain should reduce over the first week leaving a bit of discomfort for the following weeks.

This varies from person to person but we would advise three months off work and then a phased return to work. 

You will not be taken off any of your medications (AEDs) for the first year after surgery, allowing time for you brain to recover and heal; this also gives your neurologist a clear picture on how surgery has affected your epilepsy.

The DVLA regulations state that your peripheral vision is good (it will need to be tested one year after surgery) and that you must be seizure-free for at least one year before being able to drive a car or motorcycle.

Special considerations apply when the process of tapering medications down starts.