🗓️ COMING UP THIS MONTH

Brain Injury Awareness Month

March is Brain Injury Awareness Month. Just like spinal CSF leak, a brain injury can happen to anyone, anywhere, and at any time. Some people can have a spinal CSF leak occur in conjunction with a concussion or traumatic brain injury (TBI), which can make it difficult to obtain an accurate diagnosis and proper treatment.

Here are two stories where the correct diagnosis of spinal CSF leak was elusive due to confusion with post-concussion syndrome:

• Hailey suffered a spinal CSF leak after a concussion she sustained while playing soccer at age 11. Her doctors mistook her symptoms for post-concussion syndrome, and she and her family struggled for 10 years before she was correctly diagnosed and treated. Read more about Hailey's experience or watch Hailey’s story here.

• Nick was diagnosed with post-concussion syndrome after falling off a horse. It took years to discover that the correct diagnosis was in fact spinal CSF leak. Nick shared their journey to a diagnosis and treatment at our Bridging the Gap conference. Read more about Nick's experience or watch Nick’s video presentation here.

Brain Awareness Week: March 11-17, 2024

Headache on the Hill: March 19, 2024

This annual event in Washington, D.C., is organized by the Alliance for Headache Disorders Advocacy (AHDA), of which the Spinal CSF Leak Foundation is a proud member.

At Headache on the Hill, volunteer advocates come together to personally present Congress with requests, or “asks,” regarding legislation that affects the headache community. These advocates include medical providers, researchers, caregivers, and patients.

The Foundation is sending several advocates to this year’s event, including our Executive Director, and we look forward to sharing updates about the experience.

Further information about Headache on the Hill:

• A look at past HoH events from the AHDA 

• “HoH Gave Me Hope About the Future” 

• “Using My Voice”

🔎 RESEARCH NEWS

A New Paper on Spinal CSF Leak that Goes “Beyond Myths”

Dr. Ian Carroll and Dr. Andrew Callen have published an important guest editorial article in Headache: The Journal of Head and Face Pain covering pivotal research on the topic of spinal CSF leak, spontaneous intracranial hypotension, and PDPH over the past decade.

The paper, titled “Beyond Myths: Transformative Insights into Spinal Cerebrospinal Fluid Leaks and Their Role in Persistent Headache Syndromes,” also highlights three novel concepts that the authors see emerging from the accumulating data:

• Read the open access editorial by Dr. Ian Carroll and Dr. Andrew Callen here

• Access the collection of Headache journal articles on spinal CSF leak and persistent headache here

Curated Publication Abstracts

Did you know? Our resource section contains curated abstracts of research studies focused on spinal CSF leak and intracranial hypotension.

An abstract is a brief summary of a research publication, usually listing the study title, authors, the background of the study, the methods used, the study’s results, and the authors’ conclusions.

Our list of abstracts from 2024 has recently been updated—check it out to see the notable research publications we’ve gathered so far this year!

✅ IN CASE YOU MISSED IT

2023 Cedars-Sinai Intracranial Hypotension Conference videos

Throughout the month of February, we continued to share videos from the July 2023 conference.

In these videos, notable speakers from around the world presented talks on everything from percutaneous and endovascular approaches to spinal CSF leaks, to surgical approaches to ventral leaks and Tarlov cysts, to idiopathic intracranial hypertension and rebound intracranial hypertension diagnosis and treatment.

This week we’ll be finishing up the last set of talks, on research updates. You can find all of these talks on our YouTube playlist, our Conference Videos page, or the Conference’s page on our website.  

Adurable? No, it’s not a typo!

We celebrated this Valentine’s Day with a little play on words.

There are three layers of tissue, called meninges, that encase the brain and spinal cord in a bath of cerebrospinal fluid. The outermost layer is the “dura mater,” which means “tough mother.”

A spinal CSF leak happens when there is a hole, tear, or defect in the dura mater, allowing cerebrospinal fluid to escape.

“Dura” comes from an old root word from the 19th century, borrowed from Medieval Latin. It means hard, thick, or tough, with a sense of being firm, solid, and steadfast.

You’ll find it in words like durable, duration, duress, during, endure, indurate, obdurate, and even philodendron! (It’s buried deep in the “dendro-” part of the word.)

Being firm, solid, and steadfast are qualities that describe so many of us in our pursuit for diagnosis and treatment for spinal CSF leak. Hence: aDURAble!

National Caregivers Day

Friday Feb 16 was National Caregivers Day. Many people with spinal CSF leak rely on family members and caregivers for help with daily life. For those who cannot be upright without experiencing severe neurological symptoms, having help with meals, housework, parenting, and daily life activities is critical.

Karri, Amberly, Burke, and Jody shared their experiences with us as caregivers to family members with spinal CSF leak. Find out more about caregiving resources and support here.

Thanks to all those who care for, love, and support people with spinal CSF leak, and to caregivers everywhere.

Rare Disease Day

We celebrated Rare Disease Day on the rarest day of the year, February 29!

Over the years we are learning that, though perhaps uncommon, spinal CSF leak is not as rare as it was once thought to be.

One study from 2021 estimated that 4 in 100,000 people per year experience spontaneous intracranial hypotension due to spinal CSF leak—and that estimate itself may be low.

This Rare Disease Day, and every day, we honor the strength and resilience of all those affected by spinal CSF leak!

The Territory and the Map: Episode Four

Check out the latest episode of the Foundation’s podcast, “The Territory and the Map.” In episode 4, Dr. John Reiman walks Foundation executive director Andi Buchanan through four steps of assertive communication to help navigate our needs in Leakland—and beyond.

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