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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).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>An online survey exploring symptoms, diagnosis, treatment, and effect on daily life of a person\u2019s \u201cfirst\u201d CSF leak was designed with consumer involvement. Responses were received from May to August 2025. Open-text responses were analysed using thematic analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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\u201364; indicating low health-related quality-of-life) and mean Headache Impact Test-6 score was 69\u2009\u00b1\u20095 (indicating severe impact). Other challenges identified included navigating change to social identity and daily functioning.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s00415-026-13840-y","type":"journal-article","created":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T16:44:13Z","timestamp":1777567453000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["\u201cGetting to diagnosis was an absolute nightmare\u201d: survey insights about the lived experience of spinal CSF leak in Australia and Aotearoa New Zealand"],"prefix":"10.1007","volume":"273","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7633-5486","authenticated-orcid":false,"given":"Lachlan S. 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Non-financial interests: This project involved continuous input and feedback from a consumer advisor (RLS) with lived experience and voluntary leadership roles at the not-for-profit organisation Spinal CSF Leak Australia and the online CSF Leakers DownUnder patient support group. RLS receives no remuneration or additional support from these organisations.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflicts of interest"}},{"value":"The study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by The University of Melbourne Human Research Ethics Committee (Date: 01\/04\/2025, Project ID 31496).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"Informed consent was obtained from all individual participants included in the study.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}}],"article-number":"300"}}