Spinal CSF Leak Australia

04/05/2026

Are you living with or caring for someone with rare disease disability?

Join the Rare Disease Disability Virtual Kitchen Table Peer Support Sessions to connect, share and learn tips alongside others.

🗓️The next sessions are on 13 May. The topic is, "Managing the life admin - tools, tips and strategies". Separate sessions are held for:
- People living with rare disease disability (12pm - 1pm AEST)
- Their caregivers (8pm - 9pm AEST)

Learn more and register at Rare Voices Australia's website: www.bit.ly/rva-vkt

02/05/2026

Good News!

The Australian and New Zealand Spinal CSF Leak Lived Experience Survey Results are published! This important work was supported by Spinal CSF Leak Australia and co-authored by our very own Rachel Smith, chair of charity.

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

https://link.springer.com/article/10.1007/s00415-026-13840-y

We are so pleased to see this work published in the Journal of Neurology – a prominent journal. We anticipate lots of local neurologists reading at least the title, and this alone could shift their thinking about the diagnosis of spinal CSF leak.

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 diagn...

27/04/2026

EOIs close in 2 days!

We invite healthcare professionals with experience in spinal CSF leaks to join our Medical Advisory Board.

Make a real impact.

Apply: https://spinalcsfleakaustralia.org/medical-advisory-board/

04/04/2026

Another great journal article from Andrew L. Callen MD and Kyle Jenkins MD

“Most patients with CSF pressure disorders don't read the textbook.
This review is about what to do when the imaging, symptoms, and physiology don't line up, and why "high" vs "low" pressure is often the wrong framework.”

Plain Language Summary

Many patients with chronic headache have symptoms and brain imaging findings that do not clearly fit the “high” or “low” spinal fluid pressure categories. This review explains how changes in the cushioning of the brain, blood flow through the vessels of the brain, and spinal fluid flow can produce symptoms that change over time or overlap; helping to explain why diagnosis and treatment are often uncertain. Recognizing and understanding these shared mechanisms can help clinicians better interpret subtle imaging findings and guide care for patients whose headaches have gone unexplained.

Callen AL, Jenkins K. Imaging and physiology across the high–low cerebrospinal fluid pressure spectrum: Navigating diagnostic uncertainty in headache practice. Headache. 2026;00:1-14. doi:10.1111/head.70096

Objective This study was conducted to provide a clinically oriented, mechanism-based framework for interpreting neuroimaging across disorders of cerebrospinal fluid (CSF) pressure, with particular e...

31/03/2026

We invite you to share your experience of neurological care and research in Australia.

If you live with a brain condition, care for someone who does, or work in the sector (researcher, health professional), your voice can make a real difference.

We are proud to be part of Neurological Alliance Australia, which is currently running Australia's first national survey on neurological care.

The survey aims to identify gaps in care, services and research and areas for innovation to help guide future advocacy and policy.

Take the survey confidentially here: https://www.surveymonkey.com/r/2DR8TQ6

🚨Survey closes Friday, May 8th, 2026.

24/03/2026

Spinal CSF Leak Australia is inviting expressions of interest from healthcare professionals with expertise in spinal CSF leaks and related conditions to join its Medical Advisory Board.

If you are interested in contributing your expertise to improving care for people affected by spinal CSF leaks in Australia, we encourage you to apply.

Further information and application details are available by clicking on this link: https://spinalcsfleakaustralia.org/medical-advisory-board/

23/03/2026

Many people living with spinal CSF leak track their symptoms, treatments, and how long they are able to remain upright. A new tool designed by Dr. Andrew Callen specifically for the spinal CSF leak community may help make that process easier.

His new app, Upright, is designed to help patients organize and monitor important aspects of their recovery in one place. Dr. Callen is an Associate Professor of Neuroradiology and Neurology Director of the CSF Leak Program at the University of Colorado,

“Many patients already track their symptoms, upright time, treatments, and medications in notebooks or spreadsheets," said Dr. Callen. "I built a simple app to help organize that information and generate a clear recovery timeline that can be shared with their doctors."

The app also includes the ability to generate a summary report that patients can bring to appointments, or email to their care team, that tracks symptom trends, treatments, medications, and flat test results in one place. It also has a robust resource section about spinal CSF leak imaging and care.

Tools like this new app from Dr. Callen play an important role in supporting patient self-advocacy and helping individuals continue to be active members of their own healthcare team. We are grateful for Dr. Callen's tireless work and research, and his support for the Spinal CSF Leak Foundation via his volunteer role on our Medical Advisory Board.

You can learn more about the Upright: CSF Leak Recovery Tracker and download the app here: https://apps.apple.com/ca/app/upright-csf-leak-tracker/id6760313860 Currently, Upright is only available for iPhone, but Dr. Callen is working on a version for Android as well.

08/02/2026

PATIENT STORY - Abby

On New Year’s Day 2025, Abby developed what she thought was a migraine, but over the following months her symptoms worsened despite multiple reassurances that nothing serious was wrong. After several scans, ongoing deterioration, and seeking a second opinion, she was eventually diagnosed with a spinal cerebrospinal fluid (CSF) leak. Abby underwent brain and spinal surgery, followed by a gradual recovery. She is now symptom-free and back at work. Abby shares her experience to encourage others with persistent or unexplained symptoms to trust their instincts, seek specialist care when needed, and advocate for themselves. The experience has left her more mindful of her health, more cautious about pushing through symptoms, and grateful for the support she received along the way.

Read Abby's story through the link in the comments.

19/01/2026

From Wouter I. Schievink, MD. Cedars-Sinai Neurosurgery - Los Angeles

“Some patients suspected of spontaneous intracranial hypotension have small innocuous looking dural outpouchings on myelography. This study shows that such outpouchings invariably represent a CSF leak, offering new treatment options”

Some patients suspected of having SIH have small lateral dural CSF collections on DSM caudal to the origin of the nerve root sleeve. We have found evidence of a CSF leak in all these patients on surgical exploration. This observation expands their treatment options.

19/01/2026

https://www.newsweek.com/woman-debilitating-headaches-dismissed-doctors-all-changes-11350536

Liz Vassallo told Newsweek that she "was losing hope" after months of painful symptoms that left her bedridden and unable to move.

15/12/2025

Spinal CSF Leak Foundation
Thank you for your kind message and for holding Australia in your thoughts.

Our hearts are with the Jewish community and with everyone affected by the tragic events at Bondi Beach. Australia is heartbroken. We stand in solidarity with those impacted and extend our deepest condolences to the families and loved ones during this time of sorrow.

May Hanukkah bring moments of light, strength and hope, even in the midst of grief.

As Jewish communities around the world gather for the Festival of Lights, we are mindful of both celebration and sorrow. We are thinking of all who observe Hanukkah and of everyone in Australia impacted by the recent attack.

In moments when grief and uncertainty are felt alongside tradition and remembrance, we send support to our community celebrating this holiday, and hope for safety, peace, and moments of light in the days ahead.