Patients’ experiences of living with superior canal dehiscence syndrome

Abstract

Objective: The study investigated how the symptoms of superior canal dehiscence syndrome (SCDS) affected patients in their daily life, and how patients coped with the disease. Design: This was a qualitative study; semi-structured interviews were performed and analysed according to the systematic text condensation method. Study sample: Twelve of 13 identified patients with SCDS in the county of Norrbotten, Sweden, were included in the study. Results: Five main categories were created based on the patients’ experiences of living with SCDS: (1) Experiencing strange symptoms: One “new” symptom was identified–mental fatigue. (2) A restricted life socially, physically and at work: All patients experienced some extent of limitation in their daily life. (3) To accept and to protect oneself: All patients had developed strategies to protect their ears from noise. (4) Misunderstood in health care: The diagnosis was sometimes delayed several years due to lack of knowledge among healthcare workers. (5) Carefully considering treatment (surgery): Symptoms were weighed against the risk of side effects. Conclusions: SCDS was rendered an invisible disability. In the present study, we identified mental fatigue as a symptom not previously considered in the literature.