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Oxford University Hospitals NHS Foundation Trust
Epilepsy Surgery Service

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Kevin's story

October 2018

Kevin is 35 and was diagnosed with temporal lobe epilepsy in childhood. He underwent a right-sided selective 'amygdalohippocampectomy' in September 2012.

He is now free of overt seizures but still experiences auras on most days.

Kevin's story - video

Kevin first started assessments for surgery when he was 16, but during his admission for video telemetry he experienced a high number of seizures. This put him off continuing with the assessments at that point. Several years later he started to realise how the seizures were limiting his life in comparison with his brother and friends. He decided to undergo assessment for surgery again.

Kevin needed to complete the full range of assessments including Magnetic Resonance Imaging (MRI), video telemetry (vEEG), intracranial EEG (depth electrodes) and two amytal (Wada) tests. It is unusual to need such extensive assessment and he comments that Dr Adcock described him as a 'complicated young man' due to the complexity of his epilepsy. On completion of these assessments it was decided Kevin could be offered surgery.

Before surgery Kevin struggled with low self-esteem and low self-confidence which he felt were related to the epilepsy limiting his opportunities and independence. Even before surgery he started to try and socialise more and attend therapeutic groups to help his self-confidence to grow. This put him in a good position to make further changes after surgery when his seizures had improved. Kevin also experienced memory difficulties and he began to develop strategies to help in daily life both before and after surgery.

In the weeks after surgery, Kevin experienced fatigue and it was 17 weeks until he felt fit enough to return to work. He recognises that although he then felt physically fit, other aspects of recovery took much longer. For example, he still feels he is making progress with his independence, self-confidence and self-esteem even five years after surgery.

During this time he has increased his working hours from 13 to 30 which is a dramatic improvement. He has also started travelling further afield as his confidence grows. He feels his quality of life has improved greatly since surgery.

Because he still experiences auras, Kevin has been unable to gain his driving licence, but happily uses his free bus pass to travel. He is still taking a number of anti-epileptic medications.

Following surgery, Kevin experienced both mood and memory difficulties but, he was proactive in finding help and took part in a number of services and group interventions to support him with the adjustment after surgery. These have helped him dramatically improve his self-esteem, social anxiety and ultimately his quality of life.

Kevin's advice

  • After surgery recovery can take several weeks so you will need to be patient.
  • Take a structured approach to recovery and gradually build up how much you do. This will help you to manage fatigue and activity effectively.
  • View surgery as an opportunity to improve your quality of life. You can begin to do things to help improve your quality of life before surgery even if you are still having seizures. It is not necessarily the surgery itself, but what you choose to do with your life after surgery that will have the biggest impact.
  • Epilepsy is not just about having seizures, other aspects such as mood and memory can also have a big impact and so it's important to think about these too.
  • Don't be afraid to ask questions.