Spinal CSF Leak Foundation

At BTG 2025, we played a video of our global patient community sharing their lived experience with spinal CSF leak. The video is now available: youtu.be/L6AgcN29LHc Thank you to all who contributed! We hope this video helps open supportive conversations.

One of the most interesting observations from the study. In this patient, an acute sacral dural tear evolved after patching into cystic structures that could easily be interpreted as “Tarlov cysts.” Surgery later confirmed a persistent leak with arachnoid herniation. Not all Tarlov cysts are pathologic — but some may represent the chronic end of a dural tear spectrum. (Figure from the paper 👇)

Sacral dural tears in #SIH are probably under-recognized. Why? Because the sacrum often isn’t scrutinized, or sometimes even included in the field of view on routine spine imaging. In a new multicenter @AJNR study we found: • Sacral leaks often produce isolated sacral CSF collections • Image-guided patching can lead to meaningful clinical & imaging improvement • Longitudinal imaging suggests some lesions mimicking “Tarlov cysts” may actually represent chronic or partially healed leaks Encouraging to see multicenter collaboration continue to emerge in SIH imaging/treatment research. ajnr.org/content/early/…

"Improved Conspicuity of CSF-Venous Fistulas with Saline Pressure Augmentation: A Multi-Institutional Case Series" @AjayMadhavanMD doi.org/10.3174/ajnr.A…

Save the date! Inaugural meeting of the International Society for Spinal CSF leak in New York City, New York, October 17&18, 2026. ⁦@spinalCSFleak⁩ ⁦@csfleakuk⁩ ⁦@SpinalCSFLeakAu⁩ ⁦@SpinalCSFCanada⁩ ⁦@issclsociety⁩ ⁦@PeterGKranz⁩

One of the most common excuses for not using atraumatic needles for LPs: “They cost more” New study shows the opposite is true when you look downstream: • 19 fewer PDPH per 100 LPs • Fewer hospitalizations & blood patches • Net cost savings The cheapest needle is the one that doesn’t cause a leak. link.springer.com/article/10.118…

"The greatest prevalence rates by level were in the lower thoracic spine at T7, T9, & T10. One possible etiology for this pattern could be the azygous vein & an abundance of arachnoid granulations at these levels."

@Mariapuello18 gave a fantastic talk at @The_ASSR about the project she led on disparities in access to #csfleak care! Read more here: pubmed.ncbi.nlm.nih.gov/41062183/

Today is Rare Disease Day, a time to recognize conditions that are frequently misunderstood & misdiagnosed, including spinal CSF leak. Progress for rare disorders depends on collective advocacy, collaboration, & shared awareness. We are grateful to have you in our community.

Next up is Dr. Ajay Madhavan from @DukeRadiology showing us “Photon Counting Detector CT of the Spine”. #ASSR26 #neurorad #spinerad #neuroradiology

Let’s compare SIH to “Iatrogenic and Post-Dural Puncture CSF Leaks” by @LeviChazen from @HSpecialSurgery! #ASSR26 #neurorad #spinerad #neuroradiology

I am pleased to share that the UCSF CSF Leak Symposium held on 3/20/26 will now be open to patients at a discounted rate. @spinalCSFleak If you’re from the SF Bay area & interested (no virtual option), register: radiology.ucsf.edu/cme/ucsf-csf-l… And for the MDs, don’t forget to register!

Although the large majority of CVFs occur in the thoracic spine, a small but important minority occur at the skull base or sacrum. Nice video article in @TheAJNR reviews these rare CVFs and how to find them: ajnr.org/content/early/… @issclsociety @The_ASSR

📣 Mark your calendar! Interested in how our understanding of spinal CSF leaks has evolved over time? Join Dr. @AndrewCallenMD, Director of the CSF Leak Program, @CUneurorad, as he shares insights. Free to attend via Zoom: ucdenver.zoom.us/j/98542489491

A recent patient story from @Sunnybrook Health Sciences Center highlights how serious #spinalCSFleak can be and shows the importance of a multidisciplinary approach in the treatment of this condition. Read Frank story: shorturl.at/MFnav

We are pleased to share that presentations from the 2025 Intracranial Hypotension Conference in Amsterdam are now available for video replay. Thank you to Drs. @WouterSchievink, @PeterGKranz, @JrgenBeck & the full planning team such an impactful meeting! spinalcsfleak.org/conferences/20…

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 ⁦@spinalCSFleak⁩ pubmed.ncbi.nlm.nih.gov/41539719/

I’m honored to be co-chairing the UCSF CSF Leak Symposium with @vinil_shah on March 20, 2026 in San Francisco. A full-day CME course on spinal CSF leaks—advanced imaging, targeted therapies, expert panels. Register 👉 radiology.ucsf.edu/cme/ucsf-csf-l… @UCSFimaging #CSFLeak

Join us in Bern 🇨🇭, 29–31 May 2026, for the 3rd Congress on Spontaneous Intracranial Hypotension featuring excellent international faculty. ▪️ Introductory Course (Friday) ▪️ Scientific Sessions (Saturday & Sunday) 🚀Early Bird registration is now open (until 31 Jan 2026)

We are happy to welcome @AjayMadhavanMD to @DukeNeurorad @DukeRadiology! Dr. Madhavan is an expert in Spinal CSF Leak/SIH, Photon Counting CT, and spine intervention.

"Type 1 spinal CSF leaks in patients with SIH are mostly high-flow leaks that take, on average, 1.5 seconds to pass the ventral dural tear. DSM offers high temporal resolution and was ideally suited for detecting these leaks when used as a first-line investigation."