#leakweek 2022
This year’s awareness week, #leakweek2022, took place from June 6-12!
All throughout leakweek, we shared new videos featuring stories from both patients and caregivers; raised funds and awareness via duradash®; and made the event truly international by teaming up with Spinal CSF Leak Canada and the CSF Leak Association to bust myths and share facts about spinal CSF leak!
#LeakWeek2022 content
Here is some of what we shared during this year’s leak week.
✅ FACT OR FICTION? ❌ #1
All throughout leakweek, we’re sharing FACTS and FICTIONS about spinal CSF leak along with Spinal CSF Leak Canada and CSF Leak Association. First up:
✅ FACT OR FICTION? ❌ There are highly significant differences on brain MRI between patients with spinal CSF leak and patients with Chiari 1 malformation.
The answer is . . .
✅ FACT! ✅
According to a recent study, there are highly significant measures of midbrain sagging that discriminate Chiari 1 malformation from SIH and may help to prevent misdiagnosis and unnecessary surgery.
✅ FACT OR FICTION? ❌ #2
All throughout leakweek, we’re sharing FACTS and FICTIONS about spinal CSF leak along with Spinal CSF Leak Canada and CSF Leak Association. From the UK-based CSF Leak Association:
✅ FACT OR FICTION? ❌
Accidental dural puncture will always heal by itself and needs no treatment.
The answer is . . .
❌ FICTION! ❌
“Accidental dural puncture is associated with long-term morbidity including persistent headache … This challenges the current definition of post-dural puncture headache as a self-limiting condition.”
✅ FACT OR FICTION? ❌ #3
All throughout leakweek, we’re sharing FACTS and FICTIONS about spinal CSF leak along with Spinal CSF Leak Canada and CSF Leak Association.
From Spinal CSF Leak Canada:
✅ FACT OR FICTION? ❌
More than one procedure may be needed to address a spinal CSF leak.
The answer is . . .
✅ FACT! ✅
While a fraction of patients do well with a single epidural blood patch, in practice, more than one procedure may be needed for many patients.
✅ FACT OR FICTION? ❌ #4
All throughout leakweek, we’re sharing FACTS and FICTIONS about spinal CSF leak along with Spinal CSF Leak Canada and CSF Leak Association.
From Spinal CSF Leak Foundation:
✅ FACT OR FICTION? ❌
Spinal CSF leak is ALWAYS characterized by an orthostatic headache (head pain that worsens upon standing).
The answer is . . .
❌ FICTION! ❌
This is not universally the case. Some patients do not present with positional headache at all, and for those who do, the positional aspect often diminishes with time. In addition, not all positional headaches are due to spinal CSF leak.
✅ FACT OR FICTION? ❌ #5
All throughout leakweek, we’re sharing FACTS and FICTIONS about spinal CSF leak along with Spinal CSF Leak Canada and CSF Leak Association.
From CSF Leak Association:
✅ FACT OR FICTION? ❌
Spontaneous intracranial hypotension (SIH) secondary to a cerebrospinal fluid (CSF) leak can have a severe impact on the quality of life of patients and their families.
The answer is . . .
✅ FACT! ✅
The CSF Leak Association just published a survey on patients’ experiences of spinal CSF leak and disability. They concluded:
“SIH is a highly disabling disorder, affecting multiple domains, including pain, mobility, activities of daily living, financial circumstances and employment. Diagnostic delay and misdiagnosis are common, and currently there is a lack of consistency in the investigation and management of SIH in the UK.”
✅ FACT OR FICTION? ❌ #6
All throughout leakweek, we’re sharing FACTS and FICTIONS about spinal CSF leak along with Spinal CSF Leak Canada and CSF Leak Association.
From Spinal CSF Leak Canada:
✅ FACT OR FICTION? ❌
A negative brain MRI excludes intracranial hypotension/SIH.
The answer is . . .
❌ FICTION? ❌
Several studies show that the diagnosis of SIH should not be excluded based on a negative brain MRI. At least 25% of patients with spontaneous intracranial hypotension have normal imaging, and over half have a normal lumbar puncture opening pressure. In instances where brain imaging is negative, further testing with spinal imaging should be pursued if SIH is suspected.
Citations: Spontaneous Intracranial Hypotension: 10 Myths and Misperceptions Peter G. Kranz, MD; Linda Gray, MD; Timothy J. Amrhein, MD. Headache 2018. First published: 24 May 2018. https://doi.org/10.1111/head.13328
Headaches Due to Low and High Intracranial Pressure. Deborah I Friedman MD. Headache August 2018, Vol.24, No.4. DOI: 10.1212/CON.0000000000000623
✅ FACT OR FICTION? ❌ #7
All throughout leakweek, we’re sharing FACTS and FICTIONS about spinal CSF leak along with Spinal CSF Leak Canada and CSF Leak Association. Here is our final one:
✅ FACT OR FICTION? ❌
More research, awareness, and education about spinal CSF leak is needed.
The answer is . . .
✅ FACT! ✅
While there have been great improvements over the past several years, we STILL need more research, education, and awareness about #spinalcsfleak to help improve the lives of people everywhere who are affected by it!
Hailey's Spinal CSF Leak Story
Hailey was just 11 years old when she got her spinal CSF leak playing soccer. It took her TEN YEARS to find a diagnosis and effective treatment. She shares her journey here.
Karri: A Caregiver's Perspective
When Karri’s daughter Hailey became ill, it started their family on a ten-year search for answers. See Karri’s story of being a caregiver for a child with #spinalCSFleak—while dealing with her own challenging diagnosis.
Emma's Spinal CSF Leak Story
Emma was an incredibly active child when she started exhibiting symptoms of spinal CSF leak at age 11. Now nearly 12 years into her recovery, she shares her experience with us here.
Amberly: A Caregiver's Perspective
When Amberly’s daughter Emma became ill, they had to seek specialized care far from home in order for Emma to receive proper treatment. Watch Amberly’s story of being a caregiver for a child with spinal CSF leak.
Jack's Spinal CSF Leak Story
When Jack showed symptoms of a spinal CSF leak at age 14, his parents had to push hard for him to be taken seriously. Read more about Jack’s story and watch the video here.
Jody: A Caregiver's Perspective
When their son Jack began showing symptoms of a spinal CSF leak at age 14, parents Jody and Burke had to push hard for him to be taken seriously. Watch Jody’s story of being a caregiver for a child with spinal CSF leak here.
Burke: A Caregiver's Perspective
When their son Jack began showing symptoms of a spinal CSF leak at age 14, parents Jody and Burke had to push hard for him to be taken seriously. Watch Burke’s story of being a caregiver for a child with spinal CSF leak here.
Leak Week Information
Here is some information about leak week that you can download and share as you raise awareness.
Spinal CSF Leak Information
Here is some information about the Spinal CSF Leak Foundation and the work we do, as well as some general information about spinal CSF leak that you can share as you raise awareness during leak week.
About us (PDF)
The history and mission of the Spinal CSF Leak Foundation
Infographic (PDF)
Our programs in education, research, and awareness
