Spinal CSF Leak Australia

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! 🌟

25/10/2025

20/10/2025

📣New study in confirms previous reports that Lumbar puncture is NOT a reliable method for diagnosing spinal CSF leak!

💥 ~32% with Spontaneous Intracranial Hypotension (SIH) have NORMAL opening pressure.

📊Conclusion: .... Increasing reliance on contrast-enhanced brain MRI, spine imaging and clinical features for SIH diagnosis."

👉Symptoms + imaging recommended for diagnosis of CSF leak.

📚Ref: Parikh SK, Deline CR, McCreary M, et al. The contribution of lumbar puncture opening pressure in the diagnosis of spontaneous intracranial hypotension: A systematic literature review and meta-analysis. Headache. 2025; 00: 1-14. doi:10.1111/head.15060

🔗 https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/head.15060

10/10/2025

Spinal CSF leaks are among medicine’s most elusive disorders—often missed, misdiagnosed, or misunderstood. But emerging imaging techniques are changing that ...

13/08/2025

IN THE NEWS: Wallabies' World Cup flyhalf set for first game of footy in 357 days after 'scary' surgery derailed NRL career

"Former Wallabies star Carter Gordon is set to play his first rugby league game in 357 days after an inspirational return from surgery following a spinal fluid leak."

https://www.theroar.com.au/2025/08/12/wallabies-world-cup-flyhalf-set-for-first-game-of-footy-in-357-days-after-scary-surgery-derailed-nrl-career/?fbclid=IwY2xjawMJ9tRleHRuA2FlbQIxMQABHjB3b7-jRJ_v-xc6iC_toq91GX8ANAippjD0aVIkWjrw46zXiDfXrPbsKNAX_aem_ppPGALQmHnPRathjORUR9Q

Former Wallabies star Carter Gordon is set to play his first rugby league game in 357 days after an inspirational return from surgery following…

12/08/2025

12/08/2025

Our Director, Nicole Frost, was at the 2025 Intracranial Hypotension Symposium held recently in Amsterdam and had the wonderful opportunity to meet with representatives from other international spinal CSF leak charities.

We want to acknowledge and congratulate the organisers of the 2025 Intracranial Hypotension Symposium held recently in Amsterdam. It was a jam-packed program highlighting the progress being made in this space and an excellent opportunity to connect with outstanding clinicians and colleagues from the international charities who do fantastic work raising awareness and supporting progress towards better outcomes from this debilitating condition. Great to see some Australian contributions from: Prof. Marcus Stoodley, Macquarie Neurosurgery; Victoria Tan, Jorn Van der Veken, Steve Chryssidis from the Flinders Medical Centre in South Australia, and exciting to hear about the launch of the International Society for Spinal CSF Leak, a spinal CSF leak organisation for clinicians. https://isscl.org/

Thank you to Spinal CSF Leak Foundation CSF Leak Association - The Cerebrospinal Fluid Leak Charity Spinal CSF Leak Canada