TyrrellFoundation

Patient Advocates. Creating awareness and supporting research for spinal CSF leaks. 💜 #CSFleak @colleenmaryllacsa @kathrynweimann

[TyrrellFoundation @TyrrellFnd]

Blog post: "My story was never really about me, it was about thousands and thousands like me - about deep unrelenting human suffering and the power of family and friends when everything else fails" https://t.co/MUI15RgRFK
#spinalCSFleak #becauseyourduramaters #leakweek

[Princess, The Tower @APainPrincess]

“Just because I’m smiling or laughing doesn’t mean I’m pain-free. I think that’s one of the hardest things for those w/out #ChronicPain or illness to understand—while symptoms go from manageable to intolerable from one day to the next—it’s always there.” https://t.co/uovVihEURX

[TyrrellFoundation @TyrrellFnd]

#unknownunknowns #CSFleak

[Peter Kranz @PeterGKranz]

@TheAJNR @The_ASSR 10 yrs ago we were looking for the wrong kind of leaks with the wrong kinds of tools. Now we find many leaks we could not find before. But no stopping until we have the right tools for every leak and every case of orthostatic HA. We’re better, but not done. #unknownunknowns

[TyrrellFoundation @TyrrellFnd]

Dream Team! Vacations for everyone! 🫶🏼

[WouterSchievink @WouterSchievink]

Many thanks to ⁦@AndrewCallenMD⁩ and ⁦@spinalCSFleak⁩ for an outstanding and inspiring Bridging the Gap conference at the amazing University of Colorado medical campus ⁦@MarkMamloukMD⁩ #DrNiklasLützen ⁦@NeuroradLal⁩ ⁦@PeterGKranz⁩

[TyrrellFoundation @TyrrellFnd]

#PalliativeCare providers we need your help and access to your services #hapc

[ribbonrx @ribbonrx]

Then there’s me, a leaker, who was told by a palliative care doctor at a major healthcare institution, “Your pain isn’t valid to be treated because it’s not caused by cancer.” Not everyone has access to the care they deserve.

[TyrrellFoundation @TyrrellFnd]

Good Morning from University of Colorado Anschutz. @CUneurorad @CUAnschutz

[TyrrellFoundation @TyrrellFnd]

@spinalCSFleak Good Morning ☀️

[TyrrellFoundation @TyrrellFnd]

This team is changing lives and we are forever grateful #csfleak @CUAnschutz @spinalCSFleak

[Andrew L Callen MD @AndrewCallenMD]

I am so grateful for this group of incredible patient and physician speakers who made their way to Colorado to discuss CSF leaks! @spinalCSFleak

[TyrrellFoundation @TyrrellFnd]

#CSFleak Yes, all of this all of the time 😞Thank you for shining light on the nightmare of a spinal fluid leak @spinalCSFleak @CUneurorad @CUAnschutz @CUMedicalSchool @AndrewCallenMD

[TyrrellFoundation @TyrrellFnd]

Palliative Care supported Colleen as she suffered for years with a leak. So grateful for this topic @spinalCSFleak #Btg2024 @CUAnschutz @CUneurorad @SWHPN

[TyrrellFoundation @TyrrellFnd]

#CSFleak We can relate to all of the patient stories. Thank you for sharing at Bridging the Gap @spinalCSFleak @CUneurorad @CUAnschutz #btg2024

[Spinal CSF Leak Foundation @spinalCSFleak]

Today’s the day! This year’s event, presented by @AndrewCallenMD & @CUAnschutz in partnership with the Spinal CSF Leak Foundation, starts soon. This year, there are 800+ attendees from 32 countries! We’ll be sharing talks as they happen here during the day. #btg2024

[CU Neuroradiology @CUneurorad]

New in @TheAJNR

Assessing the Diagnostic Value of Brain White Matter Hyperintensities and Clinical Symptoms in Predicting the Detection of CSF Venous Fistula in Patients with Suspected Spontaneous Intracranial Hypotension

@NeuroRadSam @AndrewCallenMD

https://t.co/PEJwMXhyRE

[Spinal CSF Leak Foundation @spinalCSFleak]

Spinal CSF Leak: Bridging the Gap is just under 2 wks away! Join us for a conference of international patient & physician speakers, & a 2-day multifaceted discussion about diagnosing, treating, & experiencing spinal CSF leak: https://t.co/WJ3INv02Mz

(Patient tickets are free!)

[Princess, The Tower @APainPrincess]

“If you take my #pain medicine away, there’s really nothing I can do except lie in bed and feel terrible. That’s not a life. When you know there’s a treatment that can reduce that pain… that people won’t give it to you—it’s torturous.” https://t.co/z85W1O2Tu9 #opioids #cpp

[AJNR @TheAJNR]

"Myelographic Techniques for the Localization of CSF-Venous Fistulas: Updates in 2024"

#EditorsChoice @The_ASSR; @PeterGKranz; @iantmark

https://t.co/bIS95wyecx

[Princess, The Tower @APainPrincess]

“I miss feeling productive. I miss feeling spontaneous…I miss not being exhausted constantly. I miss feeling like I had a future… I’m trying hard to find my identity again. I have lost so much…after I worked so hard to become who I was.” https://t.co/UJw0MKQgG0 #chronicillness

[Brian Wallach @bsw5020]

Every day we all try to be our best. We will all fall short and when we do we will be ready to catch you.

Good night moon.

[Spinal CSF Leak Canada Charitable Organization @SpinalCSFCanada]

June is #MigraineAwarenessMonth a time to raise awareness about migraine & other types of headaches. For more information: @MigraineCanada @MigraineQuebec
Did you know?
#SpinalCSFleak is often misdiagnosed or can coexist with other types of headaches such as migraine.

[Peter Kranz @PeterGKranz]

📑 New Paper Alert 📑

DSM experts at Cedars Sinai @marcelmaya & @WouterSchievink #javiergalvan et al give tips on CSF leak localization using digital subtraction.

https://t.co/sbZ8nrCcvB

[CSF Leak Association @csfleakuk]

#leakweek2024 day three! We're talking symptoms. Head pain is the most common but not always present. There are many others & when combined they can be overwhelming @spinalCSFleak @SpinalCSFCanada @SpinalCSFLeakAu @CSFleaks