Spinal CSF Leak Australia

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! 🌟

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 ...