Spinal CSF Leak Canada

10/11/2026

🍁 Happy Thanksgiving! 🍁

We are grateful for our community of patients, caregivers, healthcare professionals, volunteers, and supporters. Your compassion, dedication, and support give us hope and inspire us to keep working toward better awareness, care, and outcomes for everyone affected by spinal CSF leak.
Wishing you and your loved ones a peaceful and meaningful Thanksgiving. 💜

10/07/2026

𝐉𝐨𝐢𝐧 𝐮𝐬 𝐟𝐨𝐫 𝐚 𝐬𝐩𝐞𝐜𝐢𝐚𝐥 𝟗𝟎-𝐦𝐢𝐧𝐮𝐭𝐞 𝐰𝐞𝐛𝐢𝐧𝐚𝐫 𝐨𝐧 𝐭𝐡𝐞 𝐍𝐞𝐰 𝐂𝐚𝐧𝐚𝐝𝐢𝐚𝐧 𝐂𝐨𝐧𝐬𝐞𝐧𝐬𝐮𝐬 𝐆𝐮𝐢𝐝𝐞𝐥𝐢𝐧𝐞𝐬 𝐨𝐧 𝐭𝐡𝐞 𝐃𝐢𝐚𝐠𝐧𝐨𝐬𝐢𝐬 𝐚𝐧𝐝 𝐓𝐫𝐞𝐚𝐭𝐦𝐞𝐧𝐭 𝐨𝐟 𝐒𝐩𝐨𝐧𝐭𝐚𝐧𝐞𝐨𝐮𝐬 𝐈𝐧𝐭𝐫𝐚𝐜𝐫𝐚𝐧𝐢𝐚𝐥 𝐇𝐲𝐩𝐨𝐭𝐞𝐧𝐬𝐢𝐨𝐧 (𝐒𝐈𝐇).
Hear four of the authors discuss highlights and key recommendations for the diagnosis and management of SIH.
🗓️ Tuesday, October 13, 2026
⏰ 7:00 PM EDT | 5:00 PM MDT

Registration is free.

Register in advance by scanning the QR code on the attached flyer or using the link below:
https://us06web.zoom.us/webinar/register/WN_jNOa6h4DRHGdGxtNpq5tXg

09/30/2026

Today, on National Day for Truth and Reconciliation, we honour the children who never returned home, Survivors of residential schools, and their families and communities.

We recognize the importance of listening, learning, remembering, and continuing the journey toward reconciliation. 🧡

09/23/2026

An extraordinary investment in the future of CSF leak care. 💜
⬇️⬇️⬇️

CU Anschutz has received an anonymous $50 million gift to expand its nationally recognized Cerebrospinal Fluid Leak Program

09/16/2026

Living with spinal CSF leak can be incredibly hard. The journey isn’t always straightforward, and there may be setbacks, unanswered questions, and days when it feels like you’re not making any progress at all. On those days, try to remember that a difficult chapter doesn’t mean the end of your story. 💜

We know more about spinal CSF leaks today than we did before. Awareness is growing, diagnostic techniques are improving, treatment options are evolving, and more healthcare professionals are learning about this condition.

If you’re in the middle of a difficult part of your journey, don’t give up hope. Keep asking questions. Keep advocating for yourself. Keep looking for the care and support you need. Progress may come in small steps, and the road may be longer than you hoped, but you don’t have to walk it alone.

To everyone in our spinal CSF leak community who is struggling right now: we see you, we’re with you, and we’re holding on to hope with you. 💜

09/14/2026

🚨🆕 𝐂𝐡𝐚𝐫𝐚𝐜𝐭𝐞𝐫𝐢𝐬𝐭𝐢𝐜𝐬 𝐨𝐟 𝐏𝐚𝐭𝐢𝐞𝐧𝐭𝐬 𝐖𝐢𝐭𝐡 𝐁𝐢𝐛𝐫𝐚𝐜𝐡𝐢𝐚𝐥 𝐀𝐦𝐲𝐨𝐭𝐫𝐨𝐩𝐡𝐲 𝐃𝐮𝐞 𝐭𝐨 𝐒𝐩𝐨𝐧𝐭𝐚𝐧𝐞𝐨𝐮𝐬 𝐒𝐩𝐢𝐧𝐚𝐥 𝐂𝐒𝐅 𝐋𝐞𝐚𝐤𝐬.
Schievink WI, Maya M, Tay ASS, Tache RB, Chu R, Moser FG, Prasad RS, Nuno MA, Lewis RA. Neurology. 2026 Oct 13;107(7):e218492.
https://doi.org/10.1212/WNL.0000000000218492

Abstract

Background and Objectives

Spontaneous spinal CSF leaks cause intracranial hypotension (SIH) and may be complicated by bibrachial amyotrophy (BBA), but the clinical and radiographic features of this complication are not well characterized. The objective of this study was to identify the unique characteristics and outcomes of treatment in patients with SIH and BBA.

Discussion

BBA due to SIH is rare, typically affects men, occurs years after SIH symptom onset, and is associated with a thick anterior extradural CSF collection on MRI. Our data suggest that surgical repair is low risk, durable, and should arrest or reverse motor impairment if performed within 10 years of BBA symptom onset, but more rigorous study designs are needed to address outcomes in these patients.

09/02/2026

🚨”Although pediatric CSF leaks are rare, recognition of their imaging manifestations is critical, as delayed diagnosis remains common. Brain and spine MRI serve as the cornerstone for evaluation and guide selection of the optimal myelographic technique for precise leak localization. Understanding the diverse spectrum of pediatric CSF leaks—dural tears, CSF-venous fistulas, and CSF-vascular malformation fistulas—is essential for accurate diagnosis and treatment planning.” Mamlouk, M.D. Detecting the drip: pediatric neuroradiologist guide to spinal CSF leaks. Pediatr Radiol (2026). https://doi.org/10.1007/s00247-026-06764-2

08/29/2026

🚨𝐓𝐡𝐞 𝐛𝐮𝐫𝐝𝐞𝐧 𝐨𝐟 𝐒𝐩𝐢𝐧𝐚𝐥 𝐂𝐒𝐅 𝐋𝐞𝐚𝐤/𝐒𝐩𝐨𝐧𝐭𝐚𝐧𝐞𝐨𝐮𝐬 𝐈𝐧𝐭𝐫𝐚𝐜𝐫𝐚𝐧𝐢𝐚𝐥 𝐇𝐲𝐩𝐨𝐭𝐞𝐧𝐬𝐢𝐨𝐧 (𝐒𝐈𝐇)
For years, people living with spinal CSF leak have described just how disabling the condition can be, but the full extent of its impact has not always been recognized or understood.

📊 New research just confirmed what SIH patients already know: this disease is seriously disabling.

A study of 321 SIH patients found that the impact on quality of life is comparable to metastatic cancer, yet most people, including many doctors, have never heard of it.

The average patient waits 7 months just to get a diagnosis. During that time, they’re losing nearly half their quality of life.

SIH is real. SIH is disabling. And SIH deserves recognition.

Share this post to help spread awareness. 💜

Volz F, Omer M, Overstijns M, Rahal AE, Hohenhaus M, Klingler JH, Lützen N, Urbach H, Zander C, Carroll I, Beck J, Wolf K. Toward quantifying disability in spontaneous intracranial hypotension: A patient-derived disability weight. Cephalalgia. 2026 Apr;46(4):3331024261444662. doi: 10.1177/03331024261444662.

Open Access: https://journals.sagepub.com/doi/epub/10.1177/03331024261444662

08/27/2026

𝐖𝐡𝐞𝐧 𝐌𝐢𝐠𝐫𝐚𝐢𝐧𝐞 𝐈𝐬𝐧’𝐭 𝐭𝐡𝐞 𝐖𝐡𝐨𝐥𝐞 𝐒𝐭𝐨𝐫𝐲: 𝐔𝐧𝐝𝐞𝐫𝐬𝐭𝐚𝐧𝐝𝐢𝐧𝐠 𝐒𝐩𝐢𝐧𝐚𝐥 𝐂𝐒𝐅 𝐋𝐞𝐚𝐤

Spinal CSF leak Canada is pleased to partner with Migraine Awareness, Advocacy and Education🇨🇦 to present a special educational webinar presented by Dr. Farnaz Amoozegar, MD, MSc, FRCPC neurologist and headache specialist.

Although most people living with migraine do not have a spinal cerebrospinal fluid (CSF) leak, understanding the differences between these conditions can help you recognize when new or changing symptoms deserve further attention.

Join us on September 22 to learn what spinal CSF leak is, how it can mimic or coexist with migraine, why diagnosis can be challenging, and what current approaches to diagnosis and treatment involve. You’ll leave with practical information to help you better understand your symptoms and know when it may be appropriate to speak with your healthcare provider.

🗓𝐃𝐚𝐭𝐞: 𝐓𝐮𝐞𝐬𝐝𝐚𝐲, 𝐒𝐞𝐩𝐭𝐞𝐦𝐛𝐞𝐫 𝟐𝟐

⏰𝐓𝐢𝐦𝐞: 𝟕:𝟑𝟎 𝐏𝐌 𝐄𝐒𝐓

📍Register now to secure your spot!

🔗https://shorturl.at/97ue4

08/25/2026

🔊 Join us for a special 90-minute webinar on the New Canadian SIH Guidelines.
Hear four of the authors discuss highlights and key recommendations for the diagnosis and management of SIH.

🗓️ Tuesday, October 13, 2026
⏰ 7:00 PM EDT | 5:00 PM MDT
Register in advance for free by scanning the QR code or using the registration link.
🔗https://shorturl.at/JQAN1