Spinal CSF Leak Australia

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

01/08/2025

SURVEY CLOSING SOON

The University of Melbourne are conducting an online survey and interview study to understand the lived experience of people with spinal CSF leak in Australia and New Zealand. If you have a diagnosed SPINAL CSF leak or have recovered from a SPINAL CSF leak, your experience is highly valued for this study.

Thank you to everyone who has already participated in this study.

To read more, please go to our website at the link below:

A new Australian charity to help create a brighter future for people experiencing Spinal Cerebrospinal Fluid (CSF) Leak

10/06/2025

Join the Superficial Siderosis Research Alliance (SSRA) for a three-day symposium dedicated to patients, caregivers, clinicians, and researchers focused on advancing care, treatment, and research for superficial siderosis.

Requests for a remote viewing link may be made up to the day of the event. You will receive three unique daily links, but you need to sign up only once.

The Superficial Siderosis Research Alliance sponsors this event, and it is free for all participants. Tickets for in-person attendance are closed.

Superficial siderosis, bibrachial amyotrophy, and spinal cord herniation are unusual but serious long-term sequelae of persistent spontaneous spinal CSF leaks in patients with spontaneous intracranial hypotension (SIH), particularly ventral spinal CSF leaks.

https://ssra.livingwithss.com/blog/event/symposium-reservations/?fbclid=IwY2xjawK00wRleHRuA2FlbQIxMQBicmlkETE1ck8zM0UxVlhFd1ZJNGNwAR4HvFg5148IHOVn4JxkvWU5KQ7EAHTLMHmaqF9ZRv4J6goWzKyqB3SaaSm7Fg_aem_SteLJiKQz5ZyL_On6hvOcw

Requests for a remote viewing link may be made up to the day of the event.