August News from the Spinal CSF Leak Foundation

Share your ileak registry℠ enrollment on social media

Thank you to everyone who has enrolled in ileak registry℠. By sharing your experience, you have added your voice and your story to research that will help advance understanding of spinal CSF leak.

This is a moment for patients to help drive research forward. Your participation helps build the patient-centered data needed to help identify patterns and guide future studies. We are truly grateful for the time you put into completing the registry.

If you are interested in sharing that you enrolled on your social media channels or elsewhere, we have created a graphic that you can share to help raise awareness about ileak registry℠. An “I joined!” graphic and an IRB-approved caption will be sent through the registry platform soon to everyone enrolled.

If you haven’t enrolled yet, now is the time!

Celebrating National Nonprofit Day

August 17 was National Nonprofit Day, a day to recognize and celebrate the organizations working every day to make a difference in the communities they serve.

For the Spinal CSF Leak Foundation, it was an opportunity to celebrate ileak registry℠ and the important role our community can now play in helping support registry outreach.

We set a goal of raising $2,500 to help us print and distribute registry postcards, posters, and other outreach materials to medical practices, leak centers, conferences, and partner organizations.

We would love your help reaching that goal! The more patients who participate and the more healthcare professionals who know about the registry, the stronger this research resource can become. Sometimes reaching that next patient starts with something as simple as a postcard in a doctor’s office waiting room or a poster in an exam room.

If you would like to help us reach our $2,500 goal, you can make a donation below to help us reach more patients and healthcare professionals with registry marketing materials.

August is Neurosurgery Awareness Month

August is Neurosurgery Awareness Month, an initiative led by the American Association of Neurological Surgeons to recognize the skill, innovation, and precision involved in neurosurgical care.

This year’s theme, “Precision That Changes Lives,” has special meaning for the spinal CSF leak community.

Not every spinal CSF leak requires surgery, and treatment looks different for every patient. But for many patients, surgery comes after a long road of unanswered questions and searching for the right care. When it is needed, surgery can offer a path toward healing and relief from life-altering symptoms.

This Neurosurgery Awareness Month, we are especially grateful for the neurosurgeons who care for people with spinal CSF leaks, including those who serve on our Medical Advisory Board and those who share their knowledge with patients, caregivers, and colleagues at Spinal CSF Leak: Bridging the Gap.

Their willingness to collaborate, teach, listen to patients and caregivers, and continue advancing the field through research and education is vital to improving care and moving the field forward.

Thank you for the skill, precision, experience, compassion, and dedication you bring to this work, and for the change you make in the lives of patients around the world.

Canadian Consensus Guidelines for the Diagnosis and Management of SIH

We want to take a moment to congratulate our friends at Spinal CSF Leak Canada on the publication of the Canadian Consensus Guidelines for the Diagnosis and Management of Spontaneous Intracranial Hypotension (SIH).

These guidelines bring together a multidisciplinary group of experts from Canada and the United States, including neurologists, neuroradiologists, anesthesiologists, and neurosurgeons, along with patients of lived experience.

There is still a long way to go when it comes to recognizing and diagnosing SIH. Even with greater awareness and better imaging, many patients spend months or years searching for an explanation for symptoms that have dramatically affected their lives. When SIH goes untreated, it can lead to additional complications, and earlier recognition can make a real difference.

The guidelines address some of the most important questions clinicians face when caring for people with SIH. They also provide practical guidance on recognizing atypical presentations, selecting appropriate imaging, and treatment options including epidural blood patches, fibrin sealant, transvenous embolization, and surgery. They also provide guidance on follow-up care needed for patients.

We are especially grateful to Spinal CSF Leak Canada for making sure that the voices of patients were included in this work. Patients help shape these guidelines that will ultimately influence the care of other patients. Their experiences bring a perspective that cannot come from clinical expertise or research alone, and their patient advocacy has helped inform care in this field.

These guidelines are open access, so are freely available to healthcare professionals, patients, caregivers, researchers, and the broader community.

We know developing consensus guidelines was a tremendous undertaking, so thank you everyone who helped bring these guidelines to life and this resource to the field.

Spinal CSF Leak Canada is also hosting an upcoming guidelines webinar with four of the authors on October 13th 7PM ET. You can register at: https://shorturl.at/JQAN1.

Study alert: Normal brain MRI does not always rule out SIH

New research offers an important reminder for patients and clinicians: a normal brain MRI does not necessarily rule out SIH.

A recent systematic review by Romozzi et al., published in Frontiers in Neurology, examined MRI-negative SIH, examining patients whose initial brain MRI did not show the findings typically associated with SIH.

The review found that MRI-negative SIH has been reported in a substantial minority of patients in selected studies. These individuals may still experience the symptoms of SIH, but diagnosis can be more challenging, with some studies reporting longer symptom duration and higher recurrence rates.

When clinical suspicion for SIH remains high despite a normal brain MRI, additional diagnostic evaluation may be warranted. Advanced imaging techniques, including CT myelography, MR myelography, and digital subtraction myelography (DSM), can sometimes help identify a spinal CSF leak not visible on routine imaging, including CSF-venous fistulas (CVFs).

The findings reinforce the growing evidence that a normal brain MRI should not, by itself, rule out SIH.

Spinal CSF Leak: Bridging the Gap theme announcement

Every patient story. Every research discovery. Every clinical perspective. Each adds another piece to our understanding of spinal CSF leak.

The Fourth Annual Spinal CSF Leak: Bridging the Gap Conference returns November 14 –15, 2026. Presented by Dr. Andrew Callen and the University of Colorado Anschutz and sponsored by the Spinal CSF Leak Foundation, this year’s conference will be held as a hybrid event, with in person attendance in Aurora, Colorado and virtual participation options.

We are announcing the theme for 2026, “From Puzzle Pieces to Patterns.” 

Over two days, patients, physicians, researchers, caregivers, and experts from around the world will come together to explore the evolving understanding of spinal CSF leak. The conference will highlight barriers to diagnosis and care, advances in imaging and treatment, uncommon and underrecognized presentations, the complexities of recovery, and the questions that continue to shape the field.

Connecting the puzzle pieces of what we know, examining what we are still learning, and recognizing patterns can open the door to new understanding of this life-altering condition.

We’re looking forward to bringing the global spinal CSF leak community together again this November. As always, admission will be free for patients. More details about the agenda, hotel accommodations, and registration will be coming soon.

New research: Symptom trajectories and postoperative treatment response after surgical repair

Neurosurgery Awareness Month makes this a timely opportunity to highlight new research examining recovery following surgical repair of a spinal CSF leak.

A new study, co-authored by two patients, Kapan and Iten, et al., and published in the Canadian Journal of Neurological Sciences, examined long-term symptoms and recovery at least 12 months after surgery among people with SIH and iatrogenic spinal CSF leaks.

The researchers conducted a cross-sectional, self-report online survey from January through April 2025, recruiting participants through international patient support groups. The analysis included 92 individuals with SIH and 136 with iatrogenic CSF leaks. Participants were asked about symptoms before and after surgery, recovery, complications, and perceived treatment effectiveness.

Among the 228 participants, orthostatic headache showed the greatest improvement following surgery. However, symptoms including fatigue, cognitive impairment, and tinnitus improved only moderately for many participants.

Recovery timelines were also highlighted. The median duration of sick leave was eight months, and 18% of participants were still on medical leave at the time of the survey.

For some patients, sealing a spinal CSF leak may not mean that every symptom immediately or completely resolves. A better understanding of persistent symptoms, complications, recovery timelines, and postoperative treatment needs is needed to help improve long-term care and patient education.

Nonprofit Highlight: G-PACT

Periodically, we’ll be highlighting a nonprofit organization doing important work that may be helpful to members of the spinal CSF leak community.

For our first nonprofit highlight, we’re excited to feature Gastroparesis Patient Association for Cures and Treatments (G-PACT), an organization dedicated to supporting individuals living with gastroparesis.

We had the opportunity to meet G-PACT’s CEO/President, Samantha Sauer, at the 2026 Global EDS Conference and were so impressed by their commitment to providing reliable resources, supportive community, and opportunities for patients to connect and share their experiences online.

August is Gastroparesis Awareness Month, making this a particularly meaningful time to highlight G-PACT. We know that many people in the spinal CSF leak community also live with co-occurring conditions, and finding trusted resources can be an important part of navigating life with multiple complex health conditions.

They also offer educational resources, accommodation cards, a podcast, monthly support groups, and opportunities to connect with others who understand what it is like to live with these conditions. If you are also living with gastroparesis, we hope you find this month’s nonprofit highlight helpful and discover a resource that can help provide support.