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

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Title: "Getting to diagnosis was an absolute nightmare": survey insights about the lived experience of spinal CSF leak in Australia and Aotearoa New Zealand.
Authors: Knight LSW; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.; College of Medicine and Public Health, Flinders Health and Medical Research Institute, Flinders University, Adelaide, South Australia, Australia., Smith RL; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.; Spinal CSF Leak Australia and CSF Leakers DownUnder Patient Support Group, Milton, Queensland, Australia., Britten-Jones AC; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.; Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, Melbourne, Victoria, Australia., John SE; Department of Biomedical Engineering, Graeme Clark Institute for Biomedical Engineering, The University of Melbourne, Parkville, Victoria, Australia.; Department of Medicine, The University of Melbourne, Parkville, Victoria, Australia., Grayden DB; Department of Biomedical Engineering, Graeme Clark Institute for Biomedical Engineering, The University of Melbourne, Parkville, Victoria, Australia., Bui BV; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia., Ayton LN; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.; Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, Melbourne, Victoria, Australia.; Department of Surgery (Ophthalmology), The University of Melbourne, Parkville, Victoria, Australia., Nguyen BN; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia. bnguyen@unimelb.edu.au.
Source: Journal of neurology [J Neurol] 2026 Apr 30; Vol. 273 (5). Date of Electronic Publication: 2026 Apr 30.
Publication Type: Journal Article
Journal Info: Publisher: Springer-Verlag Country of Publication: Germany NLM ID: 0423161 Publication Model: Electronic Cited Medium: Internet ISSN: 1432-1459 (Electronic) Linking ISSN: 03405354 NLM ISO Abbreviation: J Neurol Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: <searchLink fieldCode="AU" term="%22Knight+LSW%22">Knight LSW</searchLink>; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.; College of Medicine and Public Health, Flinders Health and Medical Research Institute, Flinders University, Adelaide, South Australia, Australia.<br /><searchLink fieldCode="AU" term="%22Smith+RL%22">Smith RL</searchLink>; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.; Spinal CSF Leak Australia and CSF Leakers DownUnder Patient Support Group, Milton, Queensland, Australia.<br /><searchLink fieldCode="AU" term="%22Britten-Jones+AC%22">Britten-Jones AC</searchLink>; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.; Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, Melbourne, Victoria, Australia.<br /><searchLink fieldCode="AU" term="%22John+SE%22">John SE</searchLink>; Department of Biomedical Engineering, Graeme Clark Institute for Biomedical Engineering, The University of Melbourne, Parkville, Victoria, Australia.; Department of Medicine, The University of Melbourne, Parkville, Victoria, Australia.<br /><searchLink fieldCode="AU" term="%22Grayden+DB%22">Grayden DB</searchLink>; Department of Biomedical Engineering, Graeme Clark Institute for Biomedical Engineering, The University of Melbourne, Parkville, Victoria, Australia.<br /><searchLink fieldCode="AU" term="%22Bui+BV%22">Bui BV</searchLink>; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.<br /><searchLink fieldCode="AU" term="%22Ayton+LN%22">Ayton LN</searchLink>; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia.; Centre for Eye Research Australia, Royal Victorian Eye and Ear Hospital, Melbourne, Victoria, Australia.; Department of Surgery (Ophthalmology), The University of Melbourne, Parkville, Victoria, Australia.<br /><searchLink fieldCode="AU" term="%22Nguyen+BN%22">Nguyen BN</searchLink>; Department of Optometry and Vision Sciences, The University of Melbourne, Parkville, Victoria, Australia. bnguyen@unimelb.edu.au.
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              Text: 2026 Apr 30
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