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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CSF Leak Association @csfleakuk

11 hours 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

8 hours 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

10 hours 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

23 hours 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 days 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

5 days 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

2 weeks 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

3 weeks 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

3 weeks ago

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Adam Fare 🖤🤍💜 @adamfare1996

3 weeks 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

3 weeks 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

4 weeks 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

4 weeks ago

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CSFLeakMatters @CSFLeakMatters

4 weeks 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

4 weeks ago

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Lindsey 🇨🇦🩵 @linds_longcovid

4 weeks ago

Ain't that the truth 😓

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SEDSConnective @SEDSConnective

4 weeks 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

a month 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

a month 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 ⁦

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CSF Leak Association @csfleakuk

a month ago

DAY SIX of #LeakyLies - a week-long Series of daily posts that are set to do some serious myth busting around #CSFLeaks!

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CSFLeakMatters @CSFLeakMatters

a month ago

CSF Leaks in a nutshell. Some have hours of up time, others have just a few minutes - enough to brush their teeth while sitting on the toilet - before becoming unimaginably ill and staggering back to bed with a vomit bag.

Orkney Fibromyalgia Sufferer ♿ @OSufferer

a month ago

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Lorenzo Pinelli @LorenzoPinelli

a month ago

Now I finally understand why in some cases of SIH with SLEC I was confused about the membranes surrounding the spinal cord: there are new ones! 🤦🏼‍♂️ pubmed.ncbi.nlm.nih.gov/37747369/