CSFLeakMatters @CSFLeakMatters

There is dignity in a diagnosis. Once a research & clinical OD and nationwide speaker, now a decade completely flattened by spontaneous Spinal Fluid Leaks. Joined June 2023

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Gayle Salama MD @GayleRSalama

2 days ago

Read our latest #CSFleak paper on opening pressures and #CVF . Absence of low opening pressure should not be used to rule out #sih. Congrats @bposani , Dr. Robbins and Dr. Strauss. @WCMRadiology @WCMCNeurology Link: pubmed.ncbi.nlm.nih.gov/40992352/

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Spinal CSF Leak Foundation @spinalCSFleak

5 days ago

“Our findings highlight the unreliability of current MRI diagnostics to detect patients with chronic PDPH, which must not lead to a mitigation of the diagnosis or a refusal of treatment.”

Headache Journal @HeadacheJournal

5 days ago

“Our findings highlight the unreliability of current MRI diagnostics to detect patients with chronic PDPH, which must not lead to a mitigation of the diagnosis or a refusal of treatment.”

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CSF Leak Association @csfleakuk

3 weeks ago

🕯️ Today on #WorldSuicidePreventionDay, we light a candle to remember, support, and stand in hope CSF leaks cause overwhelming symptoms and mental health struggles. We’re committed to treatment and support for every patient You’re not alone 🌐 csfleak.uk/living-with-th…

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CSF Leak Association @csfleakuk

3 weeks ago

💬 Prof Beck @JrgenBeck at #Hydrocephalus2025 reminds us: SIH is a severe disease with devastating impact on quality of life. 🚨 It's a tragedy that some patients can't access treatment. It’s known symptoms can cause many contemplate suicide. We must treat more patients.

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CSF Leak Association @csfleakuk

3 weeks ago

🧠 Final talk of the CSF leak session at #Hydrocephalus2025 How many myelograms are needed to find a CSF leak? 👉 Sometimes, it takes several. 🔍 Leaks often cluster around the top & bottom of the thoracic spine. 💙 Tests may be inconclusive, don’t give up hope #CSFleak

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CSF Leak Association @csfleakuk

3 weeks ago

🎤 Engaging debate at #Hydrocephalus2025 with all speakers taking thoughtful questions from the audience. 💬 Collaboration, curiosity, and commitment to improving SIH care were on full display. Grateful to all participants @Manjit_Matharu @NeuroradLal @TDobrocky @JrgenBeck

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Insun Chong, MD @insunchong

3 weeks ago

Check out the innovative work one of my neurosurgery colleagues, Dr. Meng Huang, is doing to advance minimally invasive spinal #CSFleak repairs! authors.elsevier.com/c/1ljyh3S0FS-c… @MethodistHosp @HMNeurosurgery @spinalCSFleak

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AJNR @TheAJNR

3 weeks ago

"Optimization of Photon-Counting CT Myelography for the Detection of CSF-Venous Fistulas Using Convolutional Neural Network Denoising: A Comparative Analysis of Reconstruction Techniques" doi.org/10.3174/ajnr.A… @AjayMadhavanMD @The_ASSR

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CSF Leak Association @csfleakuk

4 weeks ago

📣 Hydrocephalus World Congress 2025! Thanks to our charity’s advocacy, this year’s Congress includes a dedicated session on #CSFleaks, a vital step for awareness and better patient care. Let’s connect collaborate and make positive change happen. Together we make a difference💙

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CSF Leak Association @csfleakuk

a month ago

📣 We're excited to attend Hydrocephalus 2025 World Congress 5–8 September in Toulouse France. 🤝 We’re keen to connect with clinicians and scientists to raise awareness, share insights, and push for better outcomes for those affected by CSF leaks. #CSFLeak #CSFLeakAssociation

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CSFLeakMatters @CSFLeakMatters

a month ago

Can’t wait - best conference of the year for leak patients. CSF Leaks profoundly affect the brain, taking away countless abilities and the very essence of what makes a person uniquely themselves. The loss of self is DEVASTATING!

Spinal CSF Leak Foundation @spinalCSFleak

a month ago

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Adam Fare 🖤🤍💜 @adamfare1996

a month ago

By the time a disabled persin who was working gets to the stage where they can't carry on in their job... It's already a long time after they were too unwell to work. Trust me, we carry on far longer than we should, and do everything possible to carry on.

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CSFLeakMatters @CSFLeakMatters

a month ago

Thankfully we’re moving past the adage that SIH is "just a headache". SIH is SEVERELY DISABLING, w/ symptoms “... ranging from headache and dizziness to dementia and even movement disorders." QOL in patients with spontaneous intracranial hypotension: sciencedirect.com/science/articl…

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CSFLeakMatters @CSFLeakMatters

2 months ago

It’s very telling that when someone with our condition chooses to go, there’s: 1. a collective nod of understanding 2. a quiet reverence for how hopeless things had to have gotten 3. a hope that we ourselves don’t reach that point. CSF Leak community just lost another one.💔

Adam Fare 🖤🤍💜 @adamfare1996

2 months ago

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CSFLeakMatters @CSFLeakMatters

2 months ago

Leaking is pure torture, & only leakers can truly comprehend the magnitude of suffering. Yes, sealing is a mandatory goal, but not the only goal. Who’s caring for us while we leak & who’s looked 20 years down the road or done autopsies on our damaged brains? RIP dear leaker.

Csfdisordered @foggyleakybrain

2 months ago

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Lindsey 🇨🇦🩵 @linds_longcovid

2 months ago

Ain't that the truth 😓

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SEDSConnective @SEDSConnective

2 months ago

📢📢📢📢Breaking news : The Biggest Global survey in the world has just published on hEDS and HSD plus many many more symptoms and conditions. This is validation. You are not making it all up! Read this version here and the link to the Norris Lab who did the work and published…

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ME Association @MEAssociation

2 months ago

It's #SevereMEDay - 8th August 2025 **Trigger Warning: Suicide** On this day, please let us take a moment to honour the memory of those we have lost, including those who tragically took their own lives as a result of this devastating illness. If you'd like to show your support…

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WouterSchievink @WouterSchievink

2 months ago

90+% of patients we see with infratentorial superficial siderosis have an underlying spinal CSF leak. This week we saw two other causes: a IVth ventricular ependymoma (postop dural thickening from overdraining shunt) and bilateral jugular vein occlusion ⁦@LivingwithSS⁩ ⁦