Spinal CSF Leak Australia

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.

02/12/2025

Thank you to our UK friends at CSF Leak Association - The Cerebrospinal Fluid Leak Charity on the release of this documentary on CSF leaks.

This documentary follows Dr. Bern Hard’s journey through a spinal CSF leak, a debilitating yet treatable condition that remains widely under-recognised. Through personal experience and expert insight, the film exposes the urgent need for earlier diagnosis, equitable access to care, and full implementation of the UK consensus guidelines.

Why This Matters
Spontaneous Intracranial Hypotension (SIH) must be treated as a
medical emergency, not a rare curiosity.

Every region needs:
1. Education so orthostatic (sitting or standing) headache is recognised as a red flag for SIH.
2. MRI with contrast within two weeks of suspected SIH.
3. Local access to high-volume blood patching for effective treatment.
4. Specialist centres for those who need advanced care.
5. An SIH patient registry to drive research and improve outcomes.

Early diagnosis and treatment saves patients from years of suffering and disability whilst also saving health and social care services money.

We’re on a mission to raise awareness and drive change!
Thank you for being part of this journey.

Together, we can make a difference 💙

This documentary follows Dr. Bern Hard’s journey through a spinal CSF leak, a debilitating yet treatable condition that remains widely under-recognised. Thro...

25/11/2025

Spontaneous intracranial hypotension (SIH) is an uncommon but important cause of secondary headache that can closely mimic primary headache disorders, often leading to diagnostic delays. We present the case of a 50-year-old woman with a persistent, treatment-resistant orthostatic headache initially....

25/11/2025

We wanted to share an exciting, newly published paper from this week,"Consensus Guidelines on Diagnostic Brain and Spine Imaging of Spontaneous Intracranial Hypotension".

The paper is here: https://www.ajnr.org/content/early/2025/11/20/ajnr.A9017

This paper offers practical guidance for physicians in North America relating to diagnostic imaging in Spontaneous Intracranial Hypotension (SIH), and was written by from experts in radiology, neurosurgery, neurology, and anesthesiology — including many members of our Medical Advisory Board.

Among the guidance is that lumbar puncture should not be performed to confirm or exclude a diagnosis of SIH because many confirmed SIH patients have normal opening pressure, and that at the discretion of the treating practitioner nontargeted epidural blood patching may be performed before spine imaging in patients with brain MRI findings consistent with SIH.

The paper also notes that if a CSF-venous fistula (CVF) is strongly suspected but initial myelography is negative, repeat myelography may be necessary to detect the CVF, and that respiratory maneuvers like maximum inspiration or resisted inspiration may be helpful in detecting some CVFs.

13/11/2025

It's almost here! THREE days until Spinal CSF Leak: Bridging the Gap 2025

Register: https://bit.ly/BTGConf2025

We can't wait to gather with you for our annual Bridging the Gap conference this Saturday, November 15th at 8AM MT/10AM ET.

This year's event is fully virtual — and free! As with prior Bridging the Gap events, it is presented by Dr. Callen and the University of Colorado Anschutz Medical Campus, in partnership with the Spinal CSF Leak Foundation.

We hope you will join us. Registration is still open — so if you haven't registered yet, you can do so today!

For those already registered, you will receive an email tomorrow with a link and instructions on how to join.

13/11/2025

🎬 A big thank you to Lisa Z!

We’re so grateful to Lisa, one of our amazing community members, who hosted a movie night in September and raised $440 for our charity! 💙

Your generosity and effort warm our hearts, Lisa. These funds will help cover the essential costs of running the charity and support future awareness campaigns for spinal CSF leaks.

A huge thank you as well to everyone who came along and supported the night — what a wonderful community effort! 🌟