Spinal CSF Leak: Bridging the Gap videos now available

We are excited to share that all videos from Spinal CSF Leak: Bridging the Gap 2025 are now available on our website, including all supplemental Q&A recordings.

Held each November, this annual conference is presented by Dr. Andrew Callen and the University of Colorado Anschutz Medical Campus in partnership with the Spinal CSF Leak Foundation. It is designed for anyone interested in spinal CSF leak, including healthcare professionals, researchers, patients, and caregivers.

The 2025 conference theme was “Making the Invisible Visible,” highlighting recent research, patient-moderated Q&As, and a patient video compiled from individuals around the world. The conference also included a fireside chat focused on barriers to accessing care and the real obstacles many patients face in getting diagnosed and treated. We hope you find these videos helpful to advocate for yourself and have informed conversations with your healthcare team and loved ones.

We are already busy planning Spinal CSF Leak: Bridging the Gap 2026, and we hope to see you again this November!

Barriers to accessing care survey now closed

Thank you to the many hundreds of spinal CSF leak patients who took the time to complete our barriers to accessing care survey. We are now working with the team at the University of Colorado Anschutz Medical Campus to conduct a structured analysis of the results, with the goal of identifying trends and common themes in care gaps and recurring barriers that impact the time to a diagnosis and access to care.

We will share an update with our community once the analysis is complete and findings are ready to be released.

The UK’s CSF Leak Association documentary film

The CSF Leak Association in the UK, who we partner with annually for leakweek, released a documentary about spinal CSF leak that will feel familiar to many in our community. While the film focuses on care within the UK, it reflects a shared experience faced by patients worldwide as they work to find knowledgeable providers, specialty centers, and appropriate treatment.

The documentary centers on Dr. Bern Hard, who became suddenly ill with a headache while attending a medical conference abroad. After weeks in the hospital, she returned home to learn just how little awareness of the condition existed.

The full documentary is now available on YouTube. We’re grateful to the CSF Leak Association for helping bring visibility to patient experiences and the realities of accessing care for those with this condition.

Additional resource: Videos from Spinal CSF Leak Canada’s 2nd Canadian SIH Conference

Spinal CSF Leak Canada has released recorded videos from their 2nd Canadian SIH Conference. These sessions provide an additional learning opportunity for anyone impacted by SIH and/or spinal CSF leak. Topics include clinical diagnosis, radiographic imaging modalities, treatment strategies, and new Spinal CSF Leak Canada research and initiatives.

We encourage you to explore these videos in addition to Spinal CSF Leak: Bridging the Gap videos, and share with others who may benefit from increased awareness and understanding.

We feel deeply grateful to have partners around the world as we continue to advocate together with common goals of more research, better care, and quicker diagnosis.

Research highlight: Small lateral dural CSF collections in SIH

We wanted to highlight some new research that patients may find useful as you advocate for your care.

In this recent study by Schievink et al., a group of patients suspected to have SIH underwent digital subtraction myelography (DSM) and were found to have small lateral dural CSF collections. Each of these patients underwent surgical exploration, and evidence of a spinal CSF leak was found in every single patient studied - meaning that these small lateral dural fluid collections signaled the presence of a leak.

Additionally, the most common type of leak found in these patients was CSF-venous fistula, which challenges the idea that fluid collections do not typically occur in CVF patients.

Behind the Spinal CSF Leak Foundation Physician Directory

We unveiled our Physician Directory in November 2022. It was was initially Board Member Amanda Pickard’s project, the culmination of years of work to try and make the path to diagnosis and treatment easier for patients. We feel Amanda’s loss deeply since her passing in 2023, and we are very grateful that she was able to bring the project to fruition in what would turn out to be her final months. Since her passing, we have continued to grow the Physician Directory and it remains a growing list of care pathways for our patient community.

While the Spinal CSF Leak Foundation does not provide medical advice and does not recommend, endorse, or certify any physician or center, we take our physician directory seriously and approach it with great care. When we receive inquiries from physicians who would like to be included, or recommendations from patients in our community, we review them as a Board of Directors first. Then, before a physician or clinic is added, we schedule a virtual meeting to learn more about their practice, experience with spinal CSF leak, and interest in providing care.

Currently, our directory includes physicians and centers in 20 states plus the District of Columbia, as well as 10 countries outside the United States. We add new physicians and centers every year, and each addition matters in a highly specialized field with a limited number of experienced clinicians.

Our physician directory is offered for general informational and educational purposes only and is not a complete list of all qualified providers. Please note the Foundation has no ownership or financial interest in any physician or clinic included.

We are also always grateful when patients share physicians who have helped them. If you are a patient and would like to recommend a physician for inclusion on our list, or if you are a medical professional and wish to be listed or update your listing, please email [email protected].