The Swedish study asked 80 adults to answer some questions before their operations, two years after and at a long-term surgery follow-up of around 13 years. The answers were then analysed by researchers Anneli Ozanne and colleagues.
The answers to the questions revealed that before surgery, people experienced what they considered a normal life. They hoped that surgery would mean fewer seizures, less medication, a better social life and more self-confidence.
However, the study authors also found that people were worried about undergoing an operation, of complications and of it not reducing the number of their seizures.
The follow-up answers showed that people felt more independent, had fewer fears and worries, and their symptoms had reduced.
However, after the operation, a few people felt that even with seizure freedom or reduction, the operation had had a negative effect on their lives. They felt their quality of life was hindered by neurological and psychological side-effects from the surgery.
The researchers believe that the study confirms the benefits of epilepsy surgery. But they added that it also shows the need for more information to help people manage worries they may have before surgery and any negative experiences afterwards.
The study, published in Epilepsia in February 2016, concludes that more information will lead to realistic expectations for people.
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Ben is to appear on CBBC’s programme Operation Ouch on Monday January 25. The programme will feature Ben’s brain surgery to treat his epilepsy.