Spinal CSF Leak Foundation — a US nonprofit to raise awareness, educate and support research on intracranial hypotension + spinal cerebrospinal fluid (CSF) leak
This week is
#leakweek
, our annual awareness week for spinal CSF leak & intracranial hypotension. This year we’re once again teaming up w/
@SpinalCSFCanada
&
@csfleakinfo
to share info, resources, & facts about spinal CSF leak to raise awareness about this debilitating disorder.
We are thrilled to announce the publication of Spinal CSF Leak Foundation medical advisor Dr. Deborah Friedman’s groundbreaking study, “Quality of Life in Patients with Confirmed and Suspected Spinal CSF Leaks”—funded by your research donations.
This week is
#InvisibleDisabilitiesWeek
. Spinal CSF leak is a debilitating, disabling condition that isn't visible from the outside—or even sometimes from the inside, despite sophisticated medical imaging. Learn more about spinal CSF leak here:
This statement by Deborah Friedman, MD of
@UTSWNeurology
validates the profound suffering and associated disability that so many patients with
#SIH
due to
#spinalCSF
leak endure. We are so fortunate to have her on our medical advisory board.
#becauseyourduramaters
Dr. Deborah Friedman's Foundation-funded study: “SIH is associated with...high rates of depression, anxiety, and disability, affecting basic activities of daily living. Improved identification and treatment of SIH are imperative to improve patients’ QoL.”
Our community deeply grieves the loss of a true advocate, friend, and all-around amazing person, Foundation board vice-president Amanda J. Pickard, PhD:
🗓️Save the date!🗓️ Join
@AndrewCallenMD
and the Spinal CSF Leak Foundation for a unique one-day hybrid symposium Nov. 11th bringing patients and providers together to learn from one another. Stay tuned for registration info!
#BridgingtheGap
#becauseyourduramaters
Nothing says I love you more than using your voice to advocate for loved ones impacted by
#headachedisorders
. This Valentine's Day, we are pleased to be once again joining with patients and providers from across the country participating in Headache on the Hill!
#HOH2023
@AHDAOrg
SNEAK PEEK: Our upcoming “Bridging the Gap” conference on Nov 11 features the voices of patients as well as providers. In this clip, Sarah talks about the importance of understanding that spinal CSF leak is more than just a headache.
Register:
Today we're sharing the first of our videos from the October 2021 4th Cedars-Sinai Intracranial Hypotension Symposium: Dr. Jeremy Cutsforth-Gregory on "Diagnosis of SIH: The Challenging but Critical First Step"
#SIH2021
@CedarsSinai
@JCGneuro
✅ REGISTRATION IS NOW OPEN for "Spinal CSF Leak: Bridging the Gap Between Patients and Providers"! Join us for this FREE, one-day, in-person & virtual event. Register to attend ONLINE or IN-PERSON here:
BIG NEWS! The Spinal CSF Leak Foundation is proud to announce that we are partnering with
@RareDiseases
to create a registry for spinal CSF leak patients, which will officially launch next spring. Read more about it here:
September is pain awareness month. Read more about the kind of pain experienced by some people with spinal CSF leak, how to talk about pain with your physician, why spinal CSF leak can be so painful, and more here:
Continuing our
#brainawareness
week posts: People with
#spinalCSFleak
often experience symptoms associated with irritation of the meninges, including headache, neck stiffness or pain, photophobia, nausea, and phonophobia. Read more here:
We could not agree more. How many cases are being missed? The headache due to
#spinalCSFleak
often becomes less positional over time, evolving into a chronic daily headache pattern without obvious positional component.
#headache
#misdiagnosis
Announcing a new podcast: “The Territory and the Map" features Foundation executive director Andrea Buchanan and trauma therapist Dr. John Reiman in conversation about the complex realities of living with a spinal CSF leak.
That’s a wrap! Thank you to all of our patient speakers, all of our provider speakers, all of our moderators, the University of Colorado Anschutz depts of neurology, neurosurgery, and neuroradiology, and our course director,
@AndrewCallenMD
!
Psychiatric diagnostic labels are sadly VERY common for patients with
#POTS
and/or
#spinalCSFleak
and often inaccurate. Misdiagnoses include: anxiety, depression, somatiform disorder, malingering, Munchausen's, conversion disorder..
A doctor said her little-known disorder was all in her head
#POTS
can also cause orthostatic headache, and can mimic, co-exist with, or be caused by
#spinalCSFleak
Thanks to everyone for all the enthusiasm and wonderful feedback about our Bridging the Gap 2023 conference! You can find all of the conference videos on our YouTube channel and on the conference page on our website:
Dr.
@TimAmrheinMD
discusses his most recent publication, “Efficacy of Epidural Blood Patching or Surgery in Spontaneous Intracranial Hypotension: A Systematic Review and Evidence Map"
Transcript:
Video:
Spinal CSF leak patients: Make your voice heard at our “Bridging the Gap” conference coming up this November 11. Visit for more information!
#becauseyourduramaters
Today is
#nationaldoctorsday
! We are so grateful for the physicians on our medical advisory board, who not only diagnose & treat people living with
#spinalCSFleak
, but push research forward & educate other medical professionals about this complex disorder.
#becauseyourduramaters
RESEARCH UPDATE on the Foundation-funded study "Quality of Life in Patients with Headache from Suspected or Confirmed Spontaneous Intracranial Hypotension (SIH): A Pilot Study," from Dr. Deborah Friedman.
2023 CONFERENCE VIDEOS: Dr. Deborah Friedman, neuro-ophthalmologist and headache medicine specialist, presented this talk on “Clinical mimics of SIH” at the 2023 Cedars-Sinai Intracranial Hypotension Conference.
We're so proud to have been awarded a 2023
#RAREisGlobalAdvocateGrant
by
@horizontherapeutics
@rareis___
program, which recognizes our contributions to education & awareness & helps us continue to make a meaningful difference for those affected by spinal CSF leak.
We’re thrilled to announce the 2023 recipients of the
#RAREis
Global Advocate Grant! This year, we’ve awarded $5K grants to 50 U.S. and global patient advocacy groups working to advance, educate and address challenges faced by rare disease families: .
Spinal CSF Leak Foundation is happy to be one of the sponsors of the
#ASSR21
virtual symposium Feb. 18-21 and to help raise awareness among medical professionals about
#spinalCSFleak
#becauseyourduramaters
Dr. Lalani Carlton Jones gave a brilliant talk exploring the evidence for post-patch care—or the lack thereof—at our recent Bridging the Gap Conference
IN CONVERSATION: Dr. Mamlouk
@MarkMamloukMD
took some time to discuss with the Foundation an important new study evaluating the clinical and radiologic outcomes of CT-guided fibrin occlusion.
Living with pain can be difficult for anyone, but we recognize that spinal CSF leaks present unique challenges that can affect our well-being, from obtaining an accurate diagnosis to accessing timely and appropriate care.
#MentalHealthAwarenessMonth
#becauseyourduramaters
October is Dysautonomia Awareness Month. Some dysautonomic conditions, such as POTS, can present with some of the same symptoms as spinal CSF leak. With such overlap, it's important to consider the possibility of spinal CSF leak as an underlying cause.
We are so grateful for the efforts of the physicians on our medical advisory board to not only help diagnose & treat people living with
#SIH
and
#spinalCSFleak
, but to continually push research forward & raise awareness among medical professionals. Thank you!
#NationalDoctorsDay
Spinal cerebrospinal fluid (CSF) leak is often confused with other diagnoses. Like so many patients, Anna was told her symptoms were due to sinus infection or migraine. Here is her story.
Looking forward to celebrating exciting things with you all in 2024 as we work to raise awareness about spinal CSF leak and help reduce the suffering of all those affected by it. Happy New Year, everyone!
Today is
#WorldMentalHealthDay
. Spinal CSF leak can profoundly affect mental & emotional well-being. Our ADAPT articles show what one patient/clinical psychologist learned about attending to her mental health while living with spinal CSF leak. Start here:
By far the most common email query we receive from our community members is: How can I find a doctor who can help me? Today we're pleased to announce our physician directory, a helpful starting place for finding care specific to spinal CSF leak.
A talk by Dr. Ian Carroll on the basics of epidural blood patches—what they are and why they can fail. Presented at the Bridging the Gap Conference on November 11, 2023.
Dr. Callen discusses his recent case report, “A Causative Role for Remote Dural Puncture and Resultant Arachnoid Bleb in New Daily Persistent Headache.” via
@YouTube
It's Dysautonomia Awareness Month. As dysautonomia can present with some of the same symptoms as spinal CSF leak, it's important to consider the possibility of spinal CSF leak as an underlying cause.
Despite increasing awareness, misdiagnosis of spinal CSF leak remains common. Each prompt and correct diagnosis of a spinal CSF leak helps clarify the path to treatment and increases the chance of a durable cure.
@spinalcsfcanada
@csfleakinfo
This week is
#InvisibleDisabilitiesWeek
. Spinal CSF leak is a debilitating, disabling condition that isn't visible from the outside—or even sometimes from the inside, despite sophisticated medical imaging. Learn more about spinal CSF leak here:
Did you know? The impact of
#SIH
and
#spinalcsfleak
on quality of life has never been systematically investigated or documented in the medical literature. We want to change that. Help us this
#GivingTuesday
!
Today's the day! Super excited for a full day of fascinating presentations by patients and physicians. It all begins at 8:15am Mountain Time. See you then!
Did you know? Sometimes, patients with spinal CSF leak may present with symptoms of ataxia, and may even be diagnosed with a primary neurological disorder, when in reality their symptoms are due to underlying intracranial hypotension.
▶️ 2023 CEDARS-SINAI INTRACRANIAL HYPOTENSION CONFERENCE VIDEO ▶️ Dr.
@WouterSchievink
presented this talk on “Types of Spontaneous Leaks: Anatomy and Pathogenesis” at the 2023 Cedars-Sinai Intracranial Hypotension Conference
September is pain awareness month. Read more about the kind of pain experienced by people with spinal CSF leak, how to talk about pain with your physician, why spinal CSF leak is so painful, and more here:
Thanks to everyone for a wonderful day! We know there were many questions online that have yet to be answered—as
@AndrewCallenMD
mentioned, we plan on answering them and sharing in the coming days.
Save the date! The Fifth Cedars-Sinai Intracranial Hypotension Symposium will take place July 8-9, 2023. Stay tuned for information to come about all the speakers and topics, how to register to attend online, and more!
▶️ 2023 CEDARS-SINAI INTRACRANIAL HYPOTENSION CONFERENCE VIDEO ▶️ Dr.
@PeterGKranz
presented this talk titled “Spinal Imaging: Diagnostic Algorithm II, CT-Based” at the 2023 Cedars-Sinai Intracranial Hypotension Conference
Dr. Kranz ends his talk about epistemic humility on a philosophical note, reminding us that when it comes to spinal CSF leak research, what we don't know far outweighs what we do.
CSF-venous fistulas are an important cause of SIH but challenging to detect. A new paper investigates whether resisted inspiration results in improved visibility of CSF-venous fistulas on CT myelography in patients with SIH.
Many people with
#spinalCSFleak
find the experience challenging, even if they receive prompt diagnosis & treatment. Diana’s spinal CSF leak was resolved quickly—but any time spent suffering from a leak is too long. Here is her story:
#becauseyourduramaters
Amazing to see our Clinician Education Initiative in action! Thanks to
@AndrewCallenMD
and the team at CU for hosting and sharing insights about treating spinal CSF leak, and to
@SharathKumarGG7
for his tireless efforts to help spinal CSF leak patients.
It was so fun hosting
@SharathKumarGG7
this week in our CSF Leak Program. His passion to care for Indian patients suffering from CSF Leaks is self evident. India is so lucky to have such a dedicated physician!
Thank you
@spinalCSFleak
for sponsoring his trip!
Announcing our first Clinician Education Initiative grantees! It is our privilege to foster this kind of global awareness and education to amplify knowledge and elevate care for patients everywhere.
@SharathKumarGG7
@fernandokowacs
@GayleRSalama