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Oxford University Hospitals NHS Foundation Trust
Epilepsy Surgery Service

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Things to consider

If you have a good understanding of the benefits and risks of surgery, and your expectations of the outcome are realistic, you are much more likely to be satisfied.

If the assessments show that epilepsy surgery is a possibility for you, it is important that you consider carefully whether or not to have surgery. The results of the investigations will provide information specific to you about the likely risks and benefits.

Your Consultant Neurologist and other members of the team will discuss this with you in detail, and you will have the opportunity to ask questions. The information in this section is not a substitute for these discussions but the following aspects are important to consider.

Medication

For many, a motivation for undergoing epilepsy surgery is to reduce medication or become medication-free. While for some people this may be possible in the long term, all people remain on their medication for at least the first year following surgery. We recommend that you speak to your neurologist for advice specific to you.

Driving

An additional motivation for undergoing surgery is often to gain or regain a driving licence. This can be the case if people become seizure-free after surgery. However, even if seizures are significantly reduced, one seizure a year would mean that gaining a driving licence would not be possible. Some people may also acquire a visual field impairment following surgery, so even if they become seizure-free they will not be able to drive.

Epilepsy and driving - www.gov.uk

Employment

After epilepsy surgery you will need time off work to recover (normally around three months). Discuss this with your employer and consider the financial implications.

Speak to your Epilepsy Specialist Nurse if you have any concerns about employment; they can refer you to our Occupational Health Practitioner if appropriate.

Memory

Memory difficulties are commonly associated with epilepsy, especially temporal lobe epilepsy, as the temporal lobes of the brain are very important for memory. Surgery for temporal lobe epilepsy usually involves removal of part of the left or right temporal lobe, so it is not unusual to experience increased memory difficulties after surgery (the neuropsychological assessment aims to investigate this risk and so this will be discussed with you). If you already have memory difficulties you may be less likely to notice a deterioration after surgery.

Whatever the cause of memory problems, using strategies is usually most helpful and we would strongly recommend putting these into practice before surgery so that it will be easier for you to cope after surgery.

Visit 'Prehabilitation' for more about recommended strategies.

Memory - www.epilepsysociety.org.uk

Language

The left temporal lobe (occasionally the right temporal lobe in left-handed people) is also important for aspects of language. People with epilepsy sometimes struggle to find a word that is 'on the tip of their tongue'. Increased difficulty with this aspect of language is also common in people with left-sided temporal lobe epilepsy.

Mood

It is not unusual to experience a dip in mood soon after surgery. You may be more likely to experience this if you have experienced mood-related difficulties (such as anxiety or depression) in the past.

Normally this will improve over a few weeks or months, but some people can experience ongoing mood-related difficulties and find it more difficult to adjust.

The following factors may increase your risk of mood disturbance:

  • low self-confidence
  • social isolation
  • not currently working because of epilepsy.

Life after surgery can involve changes to your self image and mood, as well as daily activities, family relationships and social opportunities. For some people a period of adjustment is necessary.

It is important to give yourself time to adjust. If your life has been significantly disrupted by seizures, this can take longer. We will review you regularly for at least five years and make suggestions.

Visit 'Prehabilitation' for more about recommended strategies.

Quality of life

The ultimate aim of epilepsy surgery is to improve quality of life. Quality of life is difficult to define, as it may be different for different people.

The World Health Organization defines quality of life as:

"An individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns."

The following definitions have also been suggested.

"How a person measures the 'goodness' of multiple aspects of their life."

"The extent to which a person's life is comfortable or satisfying"

We know that epilepsy can have a negative impact on quality of life. Having seizures can especially cause difficulties with independence, employment and social confidence. Research has also shown that although becoming seizure-free improves quality of life it may not on its own lead to long-lasting improvements.

A model devised by Sonia Lyubomirsky, outlined below, can be helpful in thinking about factors that affect happiness.

Genetics - 50 percent

Genetics may account for up to 50 percent of the variance in happiness in a population of people. Genetic factors that affect happiness include personality traits that are based on biological factors that are not subject to change. It is thought that people have a 'set point' of happiness which is genetically determined.

Circumstances - 10 percent

These are important factors such as relationship status, health status and occupational status. Circumstances can also include negative events such as trauma or positive events such as winning the lottery. All these factors can have a major impact on happiness in the short term, but over time people adjust to their changed circumstances and happiness levels tend to return to their 'set point'. Therefore circumstances tend to account for a relatively small proportion of the happiness pie.

Intentional activity - 40 percent

Intentional activities are the things we do every day and research suggests that these are more important for maintaining happiness than our circumstances. Intentional activities can be things like achieving small goals, doing different activities we enjoy or small acts of kindness for other people. The key is to do a variety of activities.

Pie chart with three sections: Genetics 50%: Circumstances 10 %: Intentional activity 40%

For more ideas/information please see:

12 Steps to Happiness - greatergood.berkeley.edu

You can find more information about the model on Sonja Lyubomirsky's personal website.

Implications for epilepsy surgery

This model suggests that although becoming seizure-free or having a meaningful reduction in seizure frequency is likely to have a positive impact on happiness, this positive impact may not last unless people take advantage of seizure freedom to change what they do every day.

This may mean seeking new goals and increasing independence. This can be difficult if people have become socially isolated or lacking in confidence, but there are sources of support available - please discuss this with us.