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.
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alz-journals.onlinelibrary.wiley.com/doi/10.1002/tr…. Failure to diagnose CSF leaks has devastating, long term consequences, including dementia and TBI. Thanks to those doctors who fight on our behalf!
Chronic treatment with prednisone, dexamethasone, and methotrexate for “idiopathic hypertrophic pachymeningitis” in a patient with second half of the day headaches and normal CT-myelogram. CSF-venous fistula at T8 Should’ve read @PeterGKranz10 myths @spinalCSFleak
The heinous part? EVERYONE feels entitled to voice ignorant, self-righteous opinions about a disabled person’s life.
People believe that disability is something that happens to people who are weak or make bad choices, and it's not until it happens to them that they realise they were wrong - but by that point, no one is listening, because now THEY'RE seen as the weak ones who made bad choices.
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/
“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.”
Open Access: An MRI study using the Bern score finds that patients with chronic post-dural puncture #headache do not have typical imaging features of #intracranial #hypotension …adachejournal.onlinelibrary.wiley.com/share/KYMD73ZF… @ZanderCharlotte et al
🕯️ 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…
💬 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.
🧠 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
🎤 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
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
"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
📣 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💙
📣 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
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 is often misunderstood & overlooked. Our annual conference Bridging the Gap aims to spotlight patient experiences & share physician expertise. Join us for a fully virtual event on Nov 15th. Free for patients! The theme this year is: “Making the Invisible Visible".
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.
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…
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.💔
With severe chronic conditions, suicidal ideation can be almost chronic… Not because of mental illness… But because trying to live with symptoms that have no end, and no control over, is fucking difficult, and it’s only natural that sometimes we don’t want to carry on .
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.
And another CSF Leaker has died. Suffered for 5 years. Prior brain sagging, worsening after LPs. Treatment options: rejected, no options left - gone, hopefully to a better place. May they get their much deserved rest.
📢📢📢📢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…
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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