Ressources
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Read and watch about the journeys of Canadians affected by intracranial hypotension (IH) caused by a spinal CSF leak. Each story uniquely highlights the daily battles that these individuals endured, from diagnosis to treatment.
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“I don’t think of myself as a caregiver, I’m simply a wife and a life partner. As such, it’s been heartbreaking for me to witness an independent and capable man become so debilitated and dependent. I told my husband, “as long as you continue to fight, I will be there”. Some say I have a choice, but when you see someone you love suffering, there really is no choice. Their pain becomes your pain and their loss is your loss too. Our lives are intertwined no matter what. And so when I hear my grandson say “when grandad gets better...” there is nothing else I can do but hold onto that hope, be there, and fight alongside.” _ Anne
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The Spinal Cerebrospinal Fluid (CSF) Leak Pamphlet has been created by Spinal CSF Leak Canada, with medical content reviewed by a member of the Medical Advisory Team. This brochure aims to provide a clear understanding of spinal CSF leak, covering symptoms, causes, diagnostic methods, and treatment options. It also includes aftercare guidance to support recovery.
We hope this brochure serves as a valuable resource for understanding the condition and can also be shared with family and friends to help them better understand spinal CSF leaks.
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Many patients suffering from intracranial hypotension (IH) caused by a spinal cerebrospinal fluid (CSF) leak need to lie down to alleviate their symptoms, but may find themselves in situations where lying down is not socially acceptable or facilitated. Spinal CSF Leak Canada has created a Medical Accommodation Card to describe some of the symptoms of spinal CSF leak, worsening which can occur with an upright position, and the need for accommodation to lie down. This card can be presented in public situations where lying down is required, encouraging support and a space to lie down.
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Upright: CSF leak tracker app was developed by Dr. Andrew Callen, MD, Associate Professor of Neuroradiology and Neurology and Director of the CSF Leak Program at the University of Colorado, and a member of our Medical Advisory Board.
"𝙐𝙥𝙧𝙞𝙜𝙝𝙩" 𝐡𝐞𝐥𝐩s:
Daily Check-Ins
Track head pain, upright tolerance, and other symptoms over time.Summary Charts
Visualize trends in your recovery with easy-to-read charts.48-Hour Flat Test
Structured diagnostic tool to measure symptom relief when lying flat.Export Reports
Generate clinical summaries to share with your neurologist or care team.
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Services are categorized as Ground Transfers and Flight Transfers, with some flight services available provincially or nationally.
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