Spinal CSF Leak Canada

08/18/2026

🚨🆕Canadian Publication🚨
A new study from researchers at Sunnybrook Health Sciences Centre and the University of Toronto reports important findings on transvenous embolization for CSF–venous fistulas (CVFs), an increasingly recognized cause of spontaneous intracranial hypotension (SIH).

>46 patients with confirmed CVFs were included
>43.5% had no brain MRI features of SIH despite having a confirmed CVF
>80.4% experienced resolution of their presenting SIH symptoms following treatment
>Rebound intracranial hypertension occurred in 26.1%
>Among patients evaluable for recurrence, 18.9% experienced recurrence of SIH symptoms within the first six months
The procedural complication rate was 2.2%

The authors emphasize the importance of careful clinical evaluation and appropriate myelographic investigation when there is a compelling clinical suspicion of SIH, even when brain imaging is negative.

It is encouraging to see important Canadian research continuing to advance our understanding of the diagnosis and treatment of SIH and CSF–venous fistulas.

📖 Clinical recurrence and rebound intracranial hypertension after transvenous embolization of cerebrospinal fluid–venous fistulas
Kinsara R, Benomar A, Grobler R, Meng H, Kapadia A.
Journal of NeuroInterventional Surgery, 2026.

08/12/2026

🚨𝐀𝐧 𝐈𝐦𝐩𝐨𝐫𝐭𝐚𝐧𝐭 𝐌𝐢𝐥𝐞𝐬𝐭𝐨𝐧𝐞 𝐢𝐧 𝐒𝐩𝐨𝐧𝐭𝐚𝐧𝐞𝐨𝐮𝐬 𝐈𝐧𝐭𝐫𝐚𝐜𝐫𝐚𝐧𝐢𝐚𝐥 𝐇𝐲𝐩𝐨𝐭𝐞𝐧𝐬𝐢𝐨𝐧 𝐂𝐚𝐫𝐞 𝐢𝐧 𝐂𝐚𝐧𝐚𝐝𝐚!
We are Pleased to share that the accepted manuscript of the 𝐂𝐚𝐧𝐚𝐝𝐢𝐚𝐧 𝐂𝐨𝐧𝐬𝐞𝐧𝐬𝐮𝐬 𝐆𝐮𝐢𝐝𝐞𝐥𝐢𝐧𝐞𝐬 𝐟𝐨𝐫 𝐭𝐡𝐞 𝐃𝐢𝐚𝐠𝐧𝐨𝐬𝐢𝐬 𝐚𝐧𝐝 𝐌𝐚𝐧𝐚𝐠𝐞𝐦𝐞𝐧𝐭 𝐨𝐟 𝐒𝐩𝐨𝐧𝐭𝐚𝐧𝐞𝐨𝐮𝐬 𝐈𝐧𝐭𝐫𝐚𝐜𝐫𝐚𝐧𝐢𝐚𝐥 𝐇𝐲𝐩𝐨𝐭𝐞𝐧𝐬𝐢𝐨𝐧 (𝐒𝐈𝐇) 𝐡𝐚𝐬 𝐧𝐨𝐰 𝐛𝐞𝐞𝐧 𝐩𝐮𝐛𝐥𝐢𝐬𝐡𝐞𝐝 online in the Canadian Journal of Neurological Sciences, ahead of the final copy-edited and typeset version, which is expected in the coming weeks. 🎉

We are also very happy to announce that 𝐒𝐩𝐢𝐧𝐚𝐥 𝐂𝐒𝐅 𝐋𝐞𝐚𝐤 𝐂𝐚𝐧𝐚𝐝𝐚 𝐡𝐚𝐬 𝐩𝐫𝐨𝐯𝐢𝐝𝐞𝐝 𝐟𝐮𝐧𝐝𝐢𝐧𝐠 𝐭𝐨 𝐦𝐚𝐤𝐞 𝐭𝐡𝐞 𝐟𝐢𝐧𝐚𝐥 𝐩𝐮𝐛𝐥𝐢𝐜𝐚𝐭𝐢𝐨𝐧 𝐨𝐩𝐞𝐧 𝐚𝐜𝐜𝐞𝐬𝐬, helping ensure that these important recommendations will be freely available to healthcare professionals, patients, caregivers, and the broader community.

We extend our sincere gratitude to all of the guideline authors who contributed their time, expertise, and perspectives throughout this process.

To mark the publication of the guidelines, 𝐒𝐩𝐢𝐧𝐚𝐥 𝐂𝐒𝐅 𝐋𝐞𝐚𝐤 𝐂𝐚𝐧𝐚𝐝𝐚 𝐰𝐢𝐥𝐥 𝐛𝐞 𝐡𝐨𝐬𝐭𝐢𝐧𝐠 𝐚 𝐬𝐩𝐞𝐜𝐢𝐚𝐥 𝟗𝟎-𝐦𝐢𝐧𝐮𝐭𝐞 𝐰𝐞𝐛𝐢𝐧𝐚𝐫 𝐟𝐞𝐚𝐭𝐮𝐫𝐢𝐧𝐠 𝐟𝐨𝐮𝐫 𝐨𝐟 𝐭𝐡𝐞 𝐜𝐨-𝐚𝐮𝐭𝐡𝐨𝐫𝐬, who will discuss the new recommendations and their implications for the diagnosis and management of SIH.

𝐒𝐭𝐚𝐲 𝐭𝐮𝐧𝐞𝐝 𝐟𝐨𝐫 𝐭𝐡𝐞 𝐨𝐩𝐞𝐧-𝐚𝐜𝐜𝐞𝐬𝐬 𝐩𝐮𝐛𝐥𝐢𝐜𝐚𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐦𝐨𝐫𝐞 𝐝𝐞𝐭𝐚𝐢𝐥𝐬 𝐚𝐛𝐨𝐮𝐭 𝐭𝐡𝐞 𝐮𝐩𝐜𝐨𝐦𝐢𝐧𝐠 𝐰𝐞𝐛𝐢𝐧𝐚𝐫!
https://www.cambridge.org/core/blog/2026/08/12/improving-care-for-a-commonly-misdiagnosed-but-often-treatable-condition-the-new-canadian-consensus-guidelines-for-spontaneous-intracranial-hypotension-are-now-published/

08/12/2026

🚨 𝐀𝐧 𝐈𝐦𝐩𝐨𝐫𝐭𝐚𝐧𝐭 𝐌𝐢𝐥𝐞𝐬𝐭𝐨𝐧𝐞 𝐢𝐧 𝐒𝐩𝐨𝐧𝐭𝐚𝐧𝐞𝐨𝐮𝐬 𝐈𝐧𝐭𝐫𝐚𝐜𝐫𝐚𝐧𝐢𝐚𝐥 𝐇𝐲𝐩𝐨𝐭𝐞𝐧𝐬𝐢𝐨𝐧 𝐂𝐚𝐫𝐞 𝐢𝐧 𝐂𝐚𝐧𝐚𝐝𝐚!

We are Pleased to share that the accepted manuscript of the 𝐂𝐚𝐧𝐚𝐝𝐢𝐚𝐧 𝐂𝐨𝐧𝐬𝐞𝐧𝐬𝐮𝐬 𝐆𝐮𝐢𝐝𝐞𝐥𝐢𝐧𝐞𝐬 𝐟𝐨𝐫 𝐭𝐡𝐞 𝐃𝐢𝐚𝐠𝐧𝐨𝐬𝐢𝐬 𝐚𝐧𝐝 𝐌𝐚𝐧𝐚𝐠𝐞𝐦𝐞𝐧𝐭 𝐨𝐟 𝐒𝐩𝐨𝐧𝐭𝐚𝐧𝐞𝐨𝐮𝐬 𝐈𝐧𝐭𝐫𝐚𝐜𝐫𝐚𝐧𝐢𝐚𝐥 𝐇𝐲𝐩𝐨𝐭𝐞𝐧𝐬𝐢𝐨𝐧 (𝐒𝐈𝐇) 𝐡𝐚𝐬 𝐧𝐨𝐰 𝐛𝐞𝐞𝐧 𝐩𝐮𝐛𝐥𝐢𝐬𝐡𝐞𝐝 online in the Canadian Journal of Neurological Sciences, ahead of the final copy-edited and typeset version, which is expected in the coming weeks. 🎉
We are also very happy to announce that 𝐒𝐩𝐢𝐧𝐚𝐥𝐂𝐒𝐅𝐋𝐞𝐚𝐤 𝐂𝐚𝐧𝐚𝐝𝐚 𝐡𝐚𝐬 𝐩𝐫𝐨𝐯𝐢𝐝𝐞𝐝 𝐟𝐮𝐧𝐝𝐢𝐧𝐠 𝐭𝐨 𝐦𝐚𝐤𝐞 𝐭𝐡𝐞 𝐟𝐢𝐧𝐚𝐥 𝐩𝐮𝐛𝐥𝐢𝐜𝐚𝐭𝐢𝐨𝐧 𝐨𝐩𝐞𝐧 𝐚𝐜𝐜𝐞𝐬𝐬, helping ensure that these important recommendations will be freely available to healthcare professionals, patients, caregivers, and the broader community.

This important milestone would not have been possible without the dedication and collaboration of everyone involved in developing these guidelines. We extend our sincere gratitude to all of the guideline authors who contributed their time, expertise, and perspectives throughout this process, including Spinal CSF Leak Canada Founder and Chair Bahareh Cloutier and Director Dr. Rosann Seviour.

We hope these guidelines will increase awareness of SIH, support earlier diagnosis and treatment, and improve consistency of care across Canada and beyond. We also hope they will foster continued collaboration among clinicians and researchers to advance SIH care and research.

To mark the publication of the guidelines, 𝐒𝐩𝐢𝐧𝐚𝐥 𝐂𝐒𝐅 𝐋𝐞𝐚𝐤 𝐂𝐚𝐧𝐚𝐝𝐚 𝐰𝐢𝐥𝐥 𝐛𝐞 𝐡𝐨𝐬𝐭𝐢𝐧𝐠 𝐚 𝐬𝐩𝐞𝐜𝐢𝐚𝐥 𝟗𝟎-𝐦𝐢𝐧𝐮𝐭𝐞 𝐰𝐞𝐛𝐢𝐧𝐚𝐫 𝐟𝐞𝐚𝐭𝐮𝐫𝐢𝐧𝐠 𝐟𝐨𝐮𝐫 𝐨𝐟 𝐭𝐡𝐞 𝐜𝐨-𝐚𝐮𝐭𝐡𝐨𝐫𝐬, who will discuss the new recommendations and their implications for the diagnosis and management of SIH.

📍𝐒𝐭𝐚𝐲 𝐭𝐮𝐧𝐞𝐝 𝐟𝐨𝐫 𝐭𝐡𝐞 𝐨𝐩𝐞𝐧-𝐚𝐜𝐜𝐞𝐬𝐬 𝐩𝐮𝐛𝐥𝐢𝐜𝐚𝐭𝐢𝐨𝐧 𝐚𝐧𝐝 𝐦𝐨𝐫𝐞 𝐝𝐞𝐭𝐚𝐢𝐥𝐬 𝐚𝐛𝐨𝐮𝐭 𝐭𝐡𝐞 𝐮𝐩𝐜𝐨𝐦𝐢𝐧𝐠 𝐰𝐞𝐛𝐢𝐧𝐚𝐫!

Spontaneous Intracranial Hypotension (SIH) is a highly disabling condition caused by a cerebrospinal fluid (CSF) leak, which occurs spontaneously within the spinal region. Despite growing awareness and advances in imaging, SIH remains under- and misdiagnosed. It is estimated to affect 5 new people p...

07/20/2026

𝐘𝐨𝐮𝐫 𝐯𝐨𝐢𝐜𝐞 𝐜𝐨𝐮𝐥𝐝 𝐦𝐚𝐤𝐞 𝐚 𝐦𝐞𝐚𝐧𝐢𝐧𝐠𝐟𝐮𝐥 𝐝𝐢𝐟𝐟𝐞𝐫𝐞𝐧𝐜𝐞 𝐟𝐨𝐫 𝐬𝐨𝐦𝐞𝐨𝐧𝐞 𝐬𝐭𝐢𝐥𝐥 𝐬𝐞𝐚𝐫𝐜𝐡𝐢𝐧𝐠 𝐟𝐨𝐫 𝐚𝐧𝐬𝐰𝐞𝐫𝐬💜
📣We are looking for someone who is willing to share their personal journey in a short educational video and speak about:
Their experience living with migraine
When they first noticed that their symptoms were different from their usual migraine symptoms
Their journey to receiving a spinal CSF leak diagnosis
This patient story will be featured in an upcoming educational webinar presented in collaboration with MigraineCanada. The goal of this video is to help people living with migraine better understand spinal CSF leak, recognize potential differences in symptoms, and learn when it may be appropriate to discuss further assessment with their healthcare provider.

Interested or would like to learn more? We’d love to hear from you! Please send us a private message or email us at [email protected] by 𝐉𝐮𝐥𝐲 𝟐𝟔, 𝟐𝟎𝟐𝟔.

07/10/2026

👥𝐕𝐨𝐥𝐮𝐧𝐭𝐞𝐞𝐫𝐬 𝐍𝐞𝐞𝐝𝐞𝐝 - 🌟 𝐌𝐚𝐤𝐢𝐧𝐠 𝐚 𝐃𝐢𝐟𝐟𝐞𝐫𝐞𝐧𝐜𝐞

Spinal CSF Leak Canada is seeking in-person volunteers (18 years of age or older) in the Greater Toronto Area.
Volunteer shifts are flexible, with a minimum commitment of 2 hours per month (up to 6 hours). No previous experience is required, and training will be provided.

Interested in learning more?
Please contact us at [email protected]

07/04/2026

🚨🎥 𝐍𝐨𝐰 𝐀𝐯𝐚𝐢𝐥𝐚𝐛𝐥𝐞: 𝐖𝐞𝐛𝐢𝐧𝐚𝐫 𝐑𝐞𝐜𝐨𝐫𝐝𝐢𝐧𝐠
We are pleased to share that the recording of our recent educational webinar: 𝐒𝐚𝐜𝐫𝐚𝐥 𝐂𝐒𝐅 𝐋𝐞𝐚𝐤𝐬: 𝐀𝐧 𝐔𝐧𝐝𝐞𝐫𝐫𝐞𝐜𝐨𝐠𝐧𝐢𝐳𝐞𝐝 𝐂𝐚𝐮𝐬𝐞 𝐨𝐟 𝐒𝐩𝐨𝐧𝐭𝐚𝐧𝐞𝐨𝐮𝐬 𝐈𝐧𝐭𝐫𝐚𝐜𝐫𝐚𝐧𝐢𝐚𝐥 𝐇𝐲𝐩𝐨𝐭𝐞𝐧𝐬𝐢𝐨𝐧 is now available to watch on our website.

In this educational webinar, Dr. Andrew Callen MD, Associate Professor of Radiology and Neurology at the University of Colorado School of Medicine and Founder and Director of the CU CSF Leak Program, discusses sacral CSF leaks as an underrecognized cause of spontaneous intracranial hypotension (SIH). The presentation explores clinical clues, imaging challenges, sacral dural tears, Tarlov cysts, diagnostic considerations, and treatment outcomes, followed by a discussion moderated by Dr. Ian Carroll, MD, MS, Associate Professor of Anesthesiology, Perioperative, and Pain Medicine at Stanford University School of Medicine and Chief of the Stanford CSF Leak Headache Program.

We extend our sincere gratitude to Dr. Andrew Callen and Dr. Ian Carroll, both valued members of the Medical Advisory Committee of Spinal CSF Leak Canada, for generously sharing their time, expertise, and insights with our community. Their dedication to education and advancing the care of patients with spinal CSF leaks is deeply appreciated.

🎥 Watch the recording here: https://www.spinalcsfleakcanada.ca/videos-
Or scan the QR code.

07/03/2026

For 12 years, Nova Scotia patient Christina lived with debilitating symptoms caused by a spinal cerebrospinal fluid (CSF) leak while facing repeated misdiagnoses, delays in care, and barriers to accessing specialized treatment.

Despite worsening neurological symptoms and evidence suggestive of a spinal CSF leak, Christina’s journey required multiple out-of-province and out-of-country evaluations, significant financial burden, and years of advocacy before receiving more appropriate investigations and treatment.

Her story highlights the urgent need for:
• Greater awareness of spinal CSF leak and spontaneous intracranial hypotension (SIH)
• Timely diagnosis and access to specialized care
• Improved support for complex neurological cases
• Better access to out-of-province and out-of-country treatment when medically necessary

No patient should have to choose between their health and financial stability.

We are deeply grateful to Christina for courageously sharing her story.

Read Christina’s story on our website.

https://www.spinalcsfleakcanada.ca/chtistina-story

07/01/2026

🇨🇦 Happy Canada Day! | Bonne fête du Canada! 🍁

Today we celebrate the people, cultures, and communities that make Canada so special. Wishing everyone a joyful and safe Canada Day filled with pride, kindness, and time spent with family and friends.

Aujourd’hui, nous célébrons les personnes, les cultures et les communautés qui font la richesse du Canada. Nous vous souhaitons une excellente fête du Canada, remplie de joie, de fierté et de précieux moments en famille et entre amis.

06/24/2026

🚨 New Publication 🚨
𝐎𝐮𝐭 𝐨𝐟 𝐭𝐡𝐞 𝐑𝐞𝐚𝐝𝐢𝐧𝐠 𝐑𝐨𝐨𝐦: 𝐓𝐡𝐞 𝐂𝐚𝐬𝐞 𝐟𝐨𝐫 𝐏𝐚𝐭𝐢𝐞𝐧𝐭-𝐅𝐚𝐜𝐢𝐧𝐠 𝐍𝐞𝐮𝐫𝐨𝐫𝐚𝐝𝐢𝐨𝐥𝐨𝐠𝐲 𝐢𝐧 𝐒𝐩𝐢𝐧𝐚𝐥 𝐂𝐒𝐅 𝐋𝐞𝐚𝐤 𝐂𝐚𝐫𝐞 𝐀𝐧𝐝𝐫𝐞𝐰 𝐋. 𝐂𝐚𝐥𝐥𝐞𝐧 𝐀𝐦𝐞𝐫𝐢𝐜𝐚𝐧 𝐉𝐨𝐮𝐫𝐧𝐚𝐥 𝐨𝐟 𝐍𝐞𝐮𝐫𝐨𝐫𝐚𝐝𝐢𝐨𝐥𝐨𝐠𝐲 𝐉𝐮𝐧 𝟐𝟎𝟐𝟔, 𝐚𝐣𝐧𝐫.𝐀𝟗𝟒𝟗𝟔; 𝐃𝐎𝐈: 𝟏𝟎.𝟑𝟏𝟕𝟒/𝐚𝐣𝐧𝐫.𝐀𝟗𝟒𝟗𝟔

The article highlights an important challenge in spinal CSF leak care: a negative imaging study does not necessarily rule out a spinal CSF leak. The author emphasizes that neuroradiologists can play a critical role beyond interpreting images by helping patients and clinicians understand diagnostic uncertainty, selecting the most appropriate next steps, and guiding care decisions when symptoms and imaging findings do not align.
A key message from the paper is that imaging findings should always be interpreted in the context of the patient's clinical presentation, and that better communication may help reduce the lengthy diagnostic delays many patients experience.

https://www.ajnr.org/content/early/2026/06/24/ajnr.A9496
hashtag hashtag hashtag hashtag hashtag

06/24/2026

We are grateful for the support we receive through Charitable Gaming. Community Good. at Delta Bingo & Gaming Downsview.

Through this charitable gaming partnership, our volunteers help raise essential funds that support: Education, Awareness initiatives and Research

The funds raised come directly from volunteer-led charitable gaming activities, demonstrating the powerful impact of community involvement.

A heartfelt thank you to and , and our volunteers. Your support helps us continue our mission of improving the lives of Canadians affected by spinal CSF leaks and spontaneous intracranial hypotension (SIH).