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.

[CSFLeakMatters @CSFLeakMatters]

https://t.co/aJiCjUbRKZ. Failure to diagnose CSF leaks has devastating, long term consequences, including dementia and TBI. Thanks to those doctors who fight on our behalf!

[TheLizVariant @TheLizVariant]

Well this is actually terrifying. Parents, make sure to keep your eyes on your kids and not on your phone when playing at the park.

[Spinal CSF Leak Foundation @spinalCSFleak]

An exciting milestone for the ileak registry℠, our international patient registry designed to help advance research & improve understanding of spinal CSF leak: materials have been formally submitted for processing with the Institutional Review Board (IRB).

More details soon!

[CSF Leak Association @csfleakuk]

Calum’s dad founded the CSF Leak Association. Now Calum and his mum Cerian are running the Inverness 5k to raise vital funds. Cerian a founding trustees worked tirelessly to support people with CSF leaks. Let’s give them a huge boost! 🫶
Please donate 👉 https://t.co/lZE87sz2aV

[CSF Leak Association @csfleakuk]

🎉 10 Years of Impact!

💪Over the last decade we’ve worked tirelessly to raise awareness, support patients, publish research, educate healthcare professionals and advocate for timely diagnosis, treatment and care 🫶

🙏 Thank you to everyone who has been part of this journey! 💙

[CSF Leak Association @csfleakuk]

🌟Meet Our Founder

Ten years ago David Baldwin’s misdiagnosed CSF leak changed everything. From isolation came a mission: no one should face this alone - that mission became the CSF Leak Association.

🙏Thank you David for turning your struggle into a lifeline for thousands 💙

[WouterSchievink @WouterSchievink]

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

[CSFLeakMatters @CSFLeakMatters]

@DiaryofaSickGrl Being limited only by time.

[CSFLeakMatters @CSFLeakMatters]

@ThePOTSPostman My entire bandwidth has been lowered. The lows are lower than ever, and the highs are about the same as my former lows.

[CSFLeakMatters @CSFLeakMatters]

The heinous part? EVERYONE feels entitled to voice ignorant, self-righteous opinions about a disabled person’s life.

[Erin Ekins (she/her) @QueerlyAutistic]

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.

[CSFLeakMatters @CSFLeakMatters]

@MikhailaFuller @jordanbpeterson https://t.co/R9XlzFF6S7

[Brain Inflammation Collaborative @BrainInflCollab]

Mast cell activation syndrome (MCAS) can increase your risk of neurological symptoms, including but not limited to:
- migraines
- dysautonomia
- chronic fatigue
- pain hypersensitivity

A new study reveals another link between MCAS and these common conditions...and which drugs helped.🧵

[Gayle Salama MD @GayleRSalama]

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: https://t.co/HNvh6v9NkT

[Spinal CSF Leak Foundation @spinalCSFleak]

“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.”

[CSF Leak Association @csfleakuk]

🕯️ 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

🌐 https://t.co/zMGnqRDXaw

[CSF Leak Association @csfleakuk]

💬 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.

[CSF Leak Association @csfleakuk]

🧠 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

[CSF Leak Association @csfleakuk]

🎤 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

[Insun Chong, MD @insunchong]

Check out the innovative work one of my neurosurgery colleagues, Dr. Meng Huang, is doing to advance minimally invasive spinal #CSFleak repairs! https://t.co/SNfmWnQBUk @MethodistHosp @HMNeurosurgery @spinalCSFleak

[AJNR @TheAJNR]

"Optimization of Photon-Counting CT Myelography for the Detection of CSF-Venous Fistulas Using Convolutional Neural Network Denoising: A Comparative Analysis of Reconstruction Techniques"

https://t.co/zra4vJ2fi7

@AjayMadhavanMD @The_ASSR

[CSF Leak Association @csfleakuk]

📣 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💙

[CSF Leak Association @csfleakuk]

📣 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