Patients’ long-term perspectives on gains and losses after temporal lobe resection for epilepsy

Abstract

ObjectiveTo investigate long-term (>10 years) experiences and overall satisfaction with temporal lobe resections (TLB) for epilepsy. MethodsEligible participants were identified through the administrative epilepsy surgery registry at Oslo University Hospital. Data were collected through individual, semi-structured interviews with fifty participants. Interview records were analyzed using reflexive thematic analysis. ResultsParticipants’ answers were divided into two main themes: “looking back on surgery” and”considering gains and losses from surgery”. Most participants expressed satisfaction with having undergone surgery. Nevertheless, postsurgical problems had been encountered, and presurgical hopes had only partly been fulfilled. They described memory and naming problems with a major impact on daily life. Further, they had thoughts about effects on employment, independence, and feelings of loneliness, and expressed a need for more and better preoperative information. ConclusionsPresurgical hopes go beyond seizure freedom and memory and naming problems are experienced lasting many years after surgery in the temporal lobe. Better preoperative information, particularly about unwanted cognitive effects, is of prime importance. By exploring patientś presurgical hopes, a common ground for expectations on surgery may be found along with strategies on how to cope with cognitive difficulties and possible negative life changes.