spinalCSFleak @spinalCSFleak Twitter profile

Last Seen Profiles

@SaintsRugby

@EimearMulhern

@juliapetpetpet

@EbtkaratKsa

@harissultann

@alexandersuppe

@Fayala_brash

@xpdays_ua

@ArcangelPrrra

@casper_smc

@NCucerzan

@Arcuonia

@AsimRiazSquad

@dailypamelaa

@kanebrown

@bvekho

@ChisaiTiktok

@caro__sitacum

@smritikak

@renaetoyou

@SharpsburgElem

@cdromalt

@saudi7788991

@anoud8a

@shingeki_yoiko

@ria_arts_

@arbuckle_ben

@sanchomps

@pilgerpetrus

@Ahmedmalfifi

@text_players

@9ada8aa_jaryaa

@mahasiswijogja_

@ryanlevander

@EHA_Hematology

@lilchurchill

spinalCSFleak

@spinalCSFleak

6 months

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.

Quality of Life paper published - Spinal CSF Leak Foundation

Quality of Life in Patients with Confirmed or Suspected Spinal CSF Leak, by Dr. Deborah Friedman, now published.

spinalcsfleak.org

3

14

70

spinalCSFleak

@spinalCSFleak

6 months

Accommodations for patients at the Bridging the Gap conference, courtesy of the CU dept of neurology

4

6

67

spinalCSFleak

@spinalCSFleak

7 years

#RareDiseaseDay - facts from @RareDiseases

1

63

54

spinalCSFleak

@spinalCSFleak

7 months

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:

5

23

58

spinalCSFleak

@spinalCSFleak

9 months

The Spinal CSF Leak Foundation is pleased to announce two additions to our Medical Advisory Board: Dr. Andrew Callen and Dr. Mark Mamlouk. Welcome!

3

7

49

spinalCSFleak

@spinalCSFleak

4 years

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

0

19

48

spinalCSFleak

@spinalCSFleak

1 year

It's #RareDiseaseDay2023 and we're shining a light on spinal CSF leak, a condition that may be more common than previously thought. #becauseyourduramaters

2

20

45

spinalCSFleak

@spinalCSFleak

7 months

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.”

Quality of Life in Patients With Confirmed and Suspected Spinal CSF Leaks | Neurology

Background and ObjectivesSpontaneous intracranial hypotension (SIH) is a debilitating condition typically producing orthostatic headache limiting upright time. SIH is often difficult to diagnose and...

www.neurology.org

9

14

45

spinalCSFleak

@spinalCSFleak

1 year

Our community deeply grieves the loss of a true advocate, friend, and all-around amazing person, Foundation board vice-president Amanda J. Pickard, PhD:

6

11

42

spinalCSFleak

@spinalCSFleak

8 months

🗓️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

1

10

41

spinalCSFleak

@spinalCSFleak

1 year

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

1

6

38

spinalCSFleak

@spinalCSFleak

2 years

Dr. Peter Kranz on “Anatomy and Pathogenesis of CSF-Venous Fistula” at the 4th Cedars-Sinai Intracranial Hypotension Symposium, Oct. 2, 2021. #SIH2021 #spinalcsfleak @CedarsSinai @PeterGKranz

1

12

38

spinalCSFleak

@spinalCSFleak

6 months

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:

2

12

38

spinalCSFleak

@spinalCSFleak

6 years

Talk by ⁦ @DrIanCarroll ⁩ #SIH2018 re #spinalCSFleak and #POTS

1

19

35

spinalCSFleak

@spinalCSFleak

4 years

Finally, the *NEW* specific ICD10 codes for #SIH (G96.811) and spontaneous #spinalCSFleak (G96.02) are effective TODAY. #codingmatters #becauseyourduramaters . One-pager of existing and new codes effective October 1, 2020 – download PDF

1

18

38

spinalCSFleak

@spinalCSFleak

2 years

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

3

12

37

spinalCSFleak

@spinalCSFleak

8 months

✅ 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:

0

15

37

spinalCSFleak

@spinalCSFleak

10 months

The Spinal CSF Leak Foundation is pleased to announce the launch of a new Clinician Education Initiative! Details and application here:

Clinician Education Initiative - Spinal CSF Leak Foundation

Clinician Education Initiative: A new project from the Spinal CSF Leak Foundation to further clinician education

spinalcsfleak.org

1

13

36

spinalCSFleak

@spinalCSFleak

11 months

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:

2

10

35

spinalCSFleak

@spinalCSFleak

11 months

For #LeakWeek day three, we’re discussing causes of spinal CSF leak. Here are some examples of types of spontaneous leaks. #leakweek2023 #spinalcsfleak #becauseyourduramaters

1

8

35

spinalCSFleak

@spinalCSFleak

8 months

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:

4

15

34

spinalCSFleak

@spinalCSFleak

4 years

We are pleased to announce 1 of 2 research grants recently awarded to @DukeRadiology investigators @TimAmrheinMD + @LindaGr4510 . See the exciting details of their project that should impact outcomes for #SIH #spinalCSFleak patients. #becauseyourduramaters

1

6

34

spinalCSFleak

@spinalCSFleak

11 months

Welcome to #LeakWeek , our annual awareness week for spinal CSF leak! Join us w @SpinalCSFCanada & @csfleakuk as we raise awareness about this debilitating condition. First up: What is a spinal CSF leak? #leakweek2023 #spinalcsfleak #becauseyourduramaters

0

14

35

spinalCSFleak

@spinalCSFleak

3 years

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:

0

17

34

spinalCSFleak

@spinalCSFleak

8 months

Spinal CSF leak can affect anyone at any age. John was 71 years old when he experienced his first symptoms. Here is his story. #spinalcsfleak #csfvenousfistula #patientstories #becauseyourduramaters

John's story began at 71 - Spinal CSF Leak Foundation

Spinal CSF leak can affect anyone at any age. John was 71 years old when he experienced the first symptoms of a leak. Here is John's story.

spinalcsfleak.org

4

11

33

spinalCSFleak

@spinalCSFleak

6 years

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

3

17

30

spinalCSFleak

@spinalCSFleak

8 months

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.

4

7

33

spinalCSFleak

@spinalCSFleak

6 months

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 !

5

3

34

spinalCSFleak

@spinalCSFleak

4 years

NEW codes for #SIH #spinalCSFleak #OrthostaticHeadache effective Oct 1, 2020 – THX to our team of KOLs & all who wrote letters of support – #codingmatters #becauseyourduramaters - details - 1/4

4

11

31

spinalCSFleak

@spinalCSFleak

2 years

Dr. Marcel Maya on “Current SIH Diagnostic Imaging (With Leak Classification)” at the 4th Cedars-Sinai Intracranial Hypotension Symposium, Oct. 2, 2021. #SIH2021 #spinalcsfleak @CedarsSinai @marcelmaya

0

10

31

spinalCSFleak

@spinalCSFleak

6 years

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..

Peter Kranz

@PeterGKranz

6 years

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

0

11

23

2

16

30

spinalCSFleak

@spinalCSFleak

5 months

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:

2

9

31

spinalCSFleak

@spinalCSFleak

3 years

The Spinal CSF Leak Foundation is thrilled to announce the hiring of its first ever Executive Director, Andrea Buchanan. To learn more, please visit

1

3

28

spinalCSFleak

@spinalCSFleak

8 months

September is Idiopathic Intracranial Hypertension (IIH) Awareness Month. Read more about IIH and Rebound Intracranial Hypertension here:

Idiopathic Intracranial Hypertension - Spinal CSF Leak Foundation

September is Idiopathic Intracranial Hypertension Awareness Month. Spinal CSF leak patients can experience rebound intracranial hypertension after treatment

spinalcsfleak.org

2

14

30

spinalCSFleak

@spinalCSFleak

11 months

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:

1

6

31

spinalCSFleak

@spinalCSFleak

1 year

Meet Dr. Timothy Amhrein, neuroradiologist, researcher, and Spinal CSF Leak Foundation medical advisory board member.

2

6

29

spinalCSFleak

@spinalCSFleak

8 years

Opening CSF pressure is normal in >60% of patients with #spinalCSFleak - so does not rule it out.

5

12

31

spinalCSFleak

@spinalCSFleak

8 months

Spinal CSF leak patients: Make your voice heard at our “Bridging the Gap” conference coming up this November 11. Visit for more information! #becauseyourduramaters

0

17

30

spinalCSFleak

@spinalCSFleak

2 years

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

1

6

28

spinalCSFleak

@spinalCSFleak

4 years

Emily did not have a pituitary tumor, she had #SIH #spinalCSFleak – see and share her #story to elevate awareness. #becauseyourduramaters -

0

11

29

spinalCSFleak

@spinalCSFleak

1 year

For Brain Awareness day four, we’re discussing the impact of spinal CSF leak on cranial nerves #brainawarenessweek #becauseyourduramaters #spinalcsfleak

1

13

30

spinalCSFleak

@spinalCSFleak

2 years

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.

2

10

28

spinalCSFleak

@spinalCSFleak

9 months

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.

0

12

28

spinalCSFleak

@spinalCSFleak

10 months

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.

Horizon

@HorizonNews

10 months

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: .

2

5

17

0

7

28

spinalCSFleak

@spinalCSFleak

3 years

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

1

8

28

spinalCSFleak

@spinalCSFleak

10 months

Dr. Beck: "It's not just a headache." SIH affects all aspects of life, at the level of diseases like end-stage lung cancer.

1

9

27

spinalCSFleak

@spinalCSFleak

5 months

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

What is the Evidence for Post-Patch Care, by Dr. Lalani Carlton Jones

A talk by Dr. Lalani Carlton Jones exploring the evidence for post-patch care at the Bridging the Gap Conference on November 11, 2023, presented by the Spina...

www.youtube.com

2

10

27

spinalCSFleak

@spinalCSFleak

6 years

Thanks @moni_az for capturing a picture of our wonderful group of #spinalCSFleak experts at #SIH2018 today! #becauseyourduramaters

1

8

25

spinalCSFleak

@spinalCSFleak

7 months

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.

In conversation with Dr Mamlouk

Dr. Mamlouk discusses his new paper, "Factors Predictive of Treatment Success in CT Guided Fibrin Occlusion of CSF-Venous Fistulas, a Multicenter Retrospecti...

www.youtube.com

1

12

27

spinalCSFleak

@spinalCSFleak

2 years

Dr. Wouter Schievink on “Current surgical treatment of spinal CSF leaks (by leak type)” at the 4th Cedars-Sinai Intracranial Hypotension Symposium, Oct. 2, 2021. #SIH2021 #spinalcsfleak @CedarsSinai @WouterSchievink

0

8

26

spinalCSFleak

@spinalCSFleak

1 year

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

0

6

26

spinalCSFleak

@spinalCSFleak

2 years

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.

1

11

27

spinalCSFleak

@spinalCSFleak

3 years

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

1

4

27

spinalCSFleak

@spinalCSFleak

8 months

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.

Anna's story - Spinal CSF Leak Foundation

Like so many spinal CSF leak patients, Anna was told her symptoms were due to sinus infection or migraine. Here is Anna's story.

spinalcsfleak.org

1

8

27

spinalCSFleak

@spinalCSFleak

4 months

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!

1

8

27

spinalCSFleak

@spinalCSFleak

4 years

Learn from @LindaGr4510 @DukeRadiology re percutaneous #treatment of #SIH from #SIH2020 @CedarsSinai @spinalCSFleak >> -

0

6

25

spinalCSFleak

@spinalCSFleak

7 months

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:

0

9

26

spinalCSFleak

@spinalCSFleak

2 years

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.

0

13

25

spinalCSFleak

@spinalCSFleak

2 years

Dr. Mark Mamlouk on “Investigational treatment: CT-fibrin glue for CSF-venous fistulas” at the 4th Cedars-Sinai Intracranial Hypotension Symposium, Oct. 2, 2021. #SIH2021 #spinalcsfleak @CedarsSinai @MarkMamloukMD

0

7

25

spinalCSFleak

@spinalCSFleak

5 months

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.

Epidural Blood Patch Basics: What They Are and Why They Fail, by Dr....

A talk by Dr. Ian Carroll on epidural blood patch basics at the Bridging the Gap Conference on November 11, 2023, presented by the Spinal CSF Leak Foundation...

www.youtube.com

0

9

26

spinalCSFleak

@spinalCSFleak

5 years

Here is the @CedarsSinai CSF leak team ready to #duradash ! Wouter Schievink, MD, Rachelle Cruz, NP, @marcelmaya MD and Charles Louy, PhD MD - #spinalCSFleak #leakweek #becauseyourduramaters

0

10

25

spinalCSFleak

@spinalCSFleak

10 months

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

in conversation with Dr Andrew Callen

Dr. Andrew Callen discusses his newly published case report, “A Causative Role for Remote Dural Puncture and Resultant Arachnoid Bleb in New Daily Persistent...

www.youtube.com

5

8

25

spinalCSFleak

@spinalCSFleak

7 months

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.

0

4

25

spinalCSFleak

@spinalCSFleak

11 months

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

0

7

24

spinalCSFleak

@spinalCSFleak

2 years

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:

1

16

25

spinalCSFleak

@spinalCSFleak

3 years

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 !

2

12

24

spinalCSFleak

@spinalCSFleak

6 years

We were delighted to interview Dr. Linda Gray-Leithe of @DukeRadiology who, fortunately for so many, has been involved in the care of #spinalCSFleak patients since 2006. #becauseyourduramaters

0

14

23

spinalCSFleak

@spinalCSFleak

2 years

Today, in honor of #NationalWomenPhysiciansDay , we’d like to recognize the outstanding women physicians on our medical advisory board: Dr. Connie Deline, Dr. Deborah Friedman, Dr. Linda Gray Leithe, Dr. Simy Parikh, and Dr. Jill Rau @ConnieDelineMD @LindaGr4510 @SimyParikh

0

5

25

spinalCSFleak

@spinalCSFleak

7 years

Why is indeed the question @PainNewsNetwork

Pain News Network

@PainNewsNetwork

7 years

It's not #pain medication, but illicit #fentanyl that's fueling the #overdose crisis, according to a new #CDC study. So why are they still trying to limit opioid #prescriptions ? #chronicpain #painkillers #PainNewsNetwork #HaveAHeart4PeopleInPain

14

103

129

0

10

9

spinalCSFleak

@spinalCSFleak

3 years

Registration for #SIH2021 , the 4th Annual Cedars-Sinai #SIH Symposium, is OPEN to virtual attendees. In-person registration to follow when regulations permit. Thx to @WouterSchievink @ConnieDelineMD for a great line-up of faculty / topics. #spinalCSFleak

2

8

23

spinalCSFleak

@spinalCSFleak

6 months

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!

1

5

24

spinalCSFleak

@spinalCSFleak

8 months

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.

2

10

24

spinalCSFleak

@spinalCSFleak

4 months

▶️ 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

1

8

25

spinalCSFleak

@spinalCSFleak

4 years

These pre and post brain MRI images are shared with Berhanu’s #SIH #spinalCSFleak video story. #coma is a rare but serious complication -

0

9

23

spinalCSFleak

@spinalCSFleak

5 years

See the #spinalCSFleak #research grants awarded in 2018. @PeterGKranz @DukeRadiology - 2 projects funded. #KerryKnievelDO @BarrowNeuro – 1 project funded. Thanks to these investigators + their institutions for their commitment to advancing the field.

0

8

23

spinalCSFleak

@spinalCSFleak

11 months

For #LeakWeek day two, we’re discussing symptoms of spinal CSF leak. @SpinalCSFCanada @csfleakuk #leakweek2023 #spinalcsfleak #becauseyourduramaters

1

7

24

spinalCSFleak

@spinalCSFleak

3 years

A new article discusses the underappreciated nature of long-term morbidity in accidental dural puncture:

0

7

23

spinalCSFleak

@spinalCSFleak

2 years

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:

0

5

23

spinalCSFleak

@spinalCSFleak

7 years

Panel of experts discusses challenging cases at #SIH2017

0

9

21

spinalCSFleak

@spinalCSFleak

6 months

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.

1

2

23

spinalCSFleak

@spinalCSFleak

6 years

COMING SOON! June 23 is Low Pressure Headache Awareness Day as part of #Migraine + #Headache Awareness Month #MHAM - plan to wear #PURPLE + post photos + watch for posts to share. #spinalCSFleak

0

11

22

spinalCSFleak

@spinalCSFleak

4 years

We love this quote @PeterGKranz @DukeRadiology which aligns perfectly with or mission! #SIH #spinalCSFleak #becauseyourduramaters

0

8

23

spinalCSFleak

@spinalCSFleak

2 years

Day 3 of #brainawarenessweek2022 : Sometimes, #SIH due to #spinalCSFleak can be mistakenly attributed to Chiari malformation. A recent study demonstrates objective measures that can help discriminate between the two. #becauseyourduramaters

2

5

21

spinalCSFleak

@spinalCSFleak

7 months

Meet @AndrewCallenMD neuroradiologist and Spinal CSF Leak Foundation medical advisory board member.

0

8

22

spinalCSFleak

@spinalCSFleak

2 years

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!

0

8

21

spinalCSFleak

@spinalCSFleak

4 months

▶️ 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

1

6

23

spinalCSFleak

@spinalCSFleak

7 years

Dr Linda Gray of @DukeRadiology speaking at #SIH2017 in Santa Monica today

0

7

19

spinalCSFleak

@spinalCSFleak

6 years

During #leakweek , we will host 3 LIVE Ask the Expert sessions on our Facebook page. @TimAmrheinMD @DukeRadiology WouterSchievinkMD @CedarsSinai @DrIanCarroll @StanfordPain #leakweek #becauseyourduramaters #spinalCSFleak

0

13

21

spinalCSFleak

@spinalCSFleak

1 year

Meet Dr. Ian Carroll, anesthesiologist, chief of the Stanford CSF leak program, and Spinal CSF Leak Foundation medical advisory board member.

2

5

20

spinalCSFleak

@spinalCSFleak

10 months

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.

1

7

22

spinalCSFleak

@spinalCSFleak

10 months

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.

0

5

22

spinalCSFleak

@spinalCSFleak

2 years

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

0

6

22

spinalCSFleak

@spinalCSFleak

6 months

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.

Andrew L Callen MD

@AndrewCallenMD

6 months

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!

5

11

56

1

3

22

spinalCSFleak

@spinalCSFleak

5 years

Important #onlinefirst @TheJNS publication from our friends @CedarsSinai - WouterSchievinkMD + @marcelmaya - increasing the yield of imaging for #spinalCSFleak by using lateral decubitus digital subtraction myelography -

Lateral decubitus digital subtraction myelography to identify spinal CSF-venous fistulas in...

Among SIH patients in whom conventional spinal imaging showed no evidence of a CSF leak, DSM in the lateral decubitus position demonstrated a CSF-venous fistula in about three-fourths of patients...

pubmed.ncbi.nlm.nih.gov

0

15

21

spinalCSFleak

@spinalCSFleak

7 years

Dr Stephen Silberstein @JeffHeadacheCtr w #SIH2017 co-directors @ConnieDelineMD + Dr Wouter Schievink @CedarsSinai

0

8

20

spinalCSFleak

@spinalCSFleak

4 years

Attendees at #SIH2020 hearing from @JCGneuro @MayoClinicNeuro about the Variabilities and Vagaries in the clinical syndrome of #SIH . #spinalCSFleak ⁦ @CMECedarsSinai ⁩

1

10

22

spinalCSFleak

@spinalCSFleak

5 years

TOP MYTH #cranialCSFleak = #spinalCSFleak -- symptoms, causes, complications, diagnostic testing & treatments are all different. Only #spinalCSFleak causes #uprightheadache + #SIH so please stop looking for the leak in the head! Be specific: #cranialCSFleak OR #spinalCSFleak

15

6

21

spinalCSFleak

@spinalCSFleak

4 years

. @LindaGr4510 @DukeRadiology has been a leader in advancing the diagnostics and treatments for #SIH patients. #spinalCSFleak #becauseyourduramaters

0

11

22

spinalCSFleak

@spinalCSFleak

5 months

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

0

5

21

spinalCSFleak

@spinalCSFleak

6 years

Just 4 weeks to #leakweek #becauseyourduramaters #spinalCSFleak

0

11

19