“Getting to diagnosis was an absolute nightmare”: survey insights about the lived experience of spinal CSF leak in Australia and Aotearoa New Zealand

BACKGROUND: Spinal cerebrospinal fluid (CSF) leak is a disabling and often misdiagnosed condition characterised by CSF hypovolemia. Associated neurological symptoms are diverse and often leave individuals bed-bound due to their orthostatic nature. Prior literature describing the difficulties in diagnosis, treatment, and ongoing impact of CSF leak is, thus far, confined to Europe and North America. This study provides a novel account of lived experiences of spinal CSF leak in Australia and Aotearoa New Zealand (NZ). METHODS: An online survey exploring symptoms, diagnosis, treatment, and effect on daily life of a person's "first" CSF leak was designed with consumer involvement. Responses were received from May to August 2025. Open-text responses were analysed using thematic analysis. RESULTS: In total, 106 surveys were completed. Over 70 symptoms were reported; the most common were orthostatic headache (95.3%), neck pain (85.8%), and brain fog (79.2%). Most people considered their diagnosis (73.6%) and treatment (65.3%) difficult, underscored by limited clinician awareness and access to care, leaving individuals to self-advocate. Amongst symptomatic participants (73.6%), median EuroQol Visual Analogue Scale score was 40 (interquartile range 25-64; indicating low health-related quality-of-life) and mean Headache Impact Test-6 score was 69 ± 5 (indicating severe impact). Other challenges identified included navigating change to social identity and daily functioning. CONCLUSIONS: The spinal CSF leak experience in Australia and NZ is comparable to reports from other high-income countries, highlighting the global need to increase awareness of spinal CSF leak, support timely diagnostic, referral and treatment pathways, and mitigate its impact on quality of life.