Spinal CSF Leak Australia

21/07/2026

WORKING FOR POSITIVE CHANGE

The first official meeting of the Medical Advisory Board of Spinal CSF Leak Australia marked a milestone in the charity's work to drive positive change for everyone who experiences the debilitating symptoms of Spinal CSF Leaks and those who care for them. With a wealth of understanding of the current clinical and research landscape, this group are determined to drive positive changes to prevent iatrogenic leaks and improve the care pathways for those who experience a leak.

19/06/2026

❓ Why do spontaneous spinal CSF leaks happen in some people but not others? New research has uncovered a possible genetic clue...

*****SCIENTIFIC SUMMARY ******

When the “tough mother” is not so tough: Dura mater literally means tough mother. A tissue named for its mechanical properties important in it’s role protecting the central nervous system and containing CSF. But those properties can be impacted by variations in connective tissue structure.

This important new paper provides “compelling evidence that rare deleterious FBN2 variants are a major genetic risk factor for type 1b spontaneous spinal CSF leaks”, impacting human dural fibroblast binding ability.

*****EASY READING SUMMARY*****

❓ Why do some people develop spontaneous spinal CSF leaks? ❓

A new study may help bring us closer to answering that question.

➡️ Researchers found rare changes in a gene called FBN2 in around 1 in 5 patients (21%) with Type 1b spontaneous spinal CSF leaks.

Type 1b leaks are a specific subtype of spontaneous spinal CSF leak known as lateral spinal CSF leaks. The FBN2 gene helps build and maintain connective tissue throughout the body, including the dura - the membrane that holds cerebrospinal fluid (CSF) around the brain and spinal cord.

The researchers found that some of these genetic changes may affect how the dura is built and maintained, providing a possible explanation for why some people are more vulnerable to developing leaks.

➡️ This finding is important because it relates to spontaneous spinal CSF leaks - leaks that occur without a known cause such as surgery, a lumbar puncture, epidural or trauma. For many people living with a spontaneous leak, the reason it developed has never been clear.
This research provides an important clue as to why some people may be more susceptible to developing spontaneous leaks than others.

This study is an important step forward. While many leaks can be successfully identified and repaired, understanding why they occur remains an important unanswered question.

(NOTE: This study only included patients with Type 1b spontaneous spinal CSF leaks, so it is not yet known whether these findings apply to other leak types).

📖 Reference

Parks, C., et al. (2026). Spontaneous spinal CSF leaks: A rare variant exome sequencing study and functional analysis. The Lancet Neurology, 25(7), 664-672.
https://doi.org/10.1016/S1474-4422(26)00140-7

Rare deleterious variants in FBN2 might cause type 1b spontaneous spinal CSF leak, supporting the integration of FBN2 genetic testing into clinical practice. As in other connective tissue diseases, the disruption of cell adhesion to extracellular matrix proteins might participate in the pathophysiol...

08/06/2026

Leak Week- Day 9 (Final Day Wrap-up)

This week, 5 patient-led organisations across three continents came together with a shared goal: to raise awareness of spinal CSF leaks, amplify patient voices, and advocate for earlier diagnosis, better care, and improved outcomes.

To every patient, caregiver, clinician, researcher, volunteer, supporter and advocate who engaged with this campaign- thank you. Every conversation, every story shared, and every act of support helps bring greater awareness to this often-overlooked condition.

Leak Week may be ending, but the work continues.

Together, we are building momentum for a future where spinal CSF leaks are recognised earlier, diagnosed more quickly, and treated more effectively.

If you are able and would like to support the ongoing work of our volunteer-run organisation, please consider making a tax-deductible donation: https://www.givenow.com.au/spinalcsfleakaustralia

07/06/2026

Leak Week-Day 8 (Day 7 for our friends in North America/Canada/Europe)

Although Leak Week has now concluded in Australia, for the next 2 days we're proud to continue participating in this international awareness collaboration alongside our partner organisations around the world.

There is growing reason for hope.

Research into spinal CSF leaks has increased dramatically over recent decades, expanding our understanding of diagnosis, treatment and patient outcomes. International collaboration is also growing, with researchers, clinicians, patient advocates and organisations working together to improve care around the world.

Recent years have seen the development of international patient registries, new consensus imaging guidelines, and an increasing number of conferences dedicated to spinal CSF leaks and spontaneous intracranial hypotension.

Progress may not always feel fast enough, but progress is happening.
Together, we can continue to raise awareness, support research, and advocate for better outcomes for people living with spinal CSF leaks.

06/06/2026

Leak Week Day 7: Imagine It's 2030

What would excellent spinal CSF leak care look like in Australia?
Faster diagnosis? Better access to treatment? More awareness? More research? More support?

This week we've explored the challenges faced by people living with spinal CSF leaks, but today we'd like to focus on the future.

We'd love to hear your ideas. No idea is too big or too small. Tell us what changes you'd like to see by 2030.
Share your thoughts in the com

*Please keep your comments respectful and constructive* :)

06/06/2026

💙 “I was told I had early-onset dementia… but it was a CSF leak.”

Linda lost her memory, her independence, and her ability to live her normal life.

But the truth was something very different — a spinal CSF leak.

After the right diagnosis and treatment, Linda made a remarkable recovery. She now shares her story to help others get the answers she nearly missed.

💙 This Leak Week, we’re raising awareness that CSF leaks don’t always follow the textbook — and that the right diagnosis can change everything.

👉 https://csfleak.uk/living-with-the-condition/patient-experiences/linda

👉 Share to help someone find answers sooner

Mind Rethink Ireland
RareMinds Neuro Alliance Race Against Dementia

05/06/2026

Leak Week Day 6: Research Spotlight

We're proud to share findings from a groundbreaking study exploring the lived experience of people with spinal CSF leaks in Australia and Aotearoa New Zealand.

This research is particularly meaningful to us because our Chair, Rachel Smith, is one of the study's authors. Together with the research team, Rachel helped bring the voices and experiences of our community into the scientific literature, creating evidence that can help drive awareness, education, advocacy, and improvements in patient care.

📖 "Getting to diagnosis was an absolute nightmare": Survey insights about the lived experience of spinal CSF leak in Australia and Aotearoa New Zealand. You can read the study here: https://pmc.ncbi.nlm.nih.gov/articles/PMC13132889/

04/06/2026

Leak Week Day 5: Meet Our Medical Writing Team

Behind the scenes, our Medical Writing Team is working hard to develop clear, evidence-based information and educational resources for the spinal CSF leak community. From website content to patient resources, their work helps translate complex medical information into practical, accessible knowledge. Today we're introducing the talented and dedicated volunteers who are helping bring these future resources to life.

04/06/2026

This is a very important message!

🛡️Simple changes in medical care can prevent harm.🛡️

During , we’re highlighting CSF leak prevention.

❗️Act to prevent CSF leaks caused by medical procedures.

💥Atraumatic needles reduce the risk of post-dural puncture headache (PDPH) — caused by a CSF leak — without compromising success rates.

🔍Evidence shows:

✅ PDPH incidence drops from 11% to 4% with atraumatic needles¹

✅ 26G atraumatic needle is optimal for spinal anaesthesia²

📌 Documenting the site of needle insertion is key to managing complications if they arise.

❌ Lumbar puncture for the sole purpose of confirming low intracranial pressure - Not recommended³

💙 Let’s make prevention the standard — not the exception.

💙 Share to raise awareness

📚 References:
¹ Nath et al. Lancet (2018); 391(10126):1197–1204
² Maranhão et al. Anaesthesia (2021); 76(8):1098–1110
³ Cheema et al. J Neurol Neurosurg Psychiatry (2023);
🔗 Consensus Guideline PDF [ http://jnnp.bmj.com/ ]

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