Hello leaker friend! 💜

This is just more BS that patients with #chronicpain and #csfleak have to deal with. No one believes our condition is as serious as it is. I am essentially bedridden from 8/10 pain daily with pain meds on board. Yet I apparently don’t deserve pain meds anymore.

Today, after 3 years, out of the blue, my PCP decided to cut me off of my pain meds because he’s no longer “comfortable” prescribing them. He’s sending me to pain mgmt for them to take over. Pain mgmt at our hospital is anti-opioid, so I think you see where this is going. I’m not sure I’ll survive.

Follow up: today my PCP cut me off my pain meds that I’ve been on for 4 years. Wonder how that’s going to go?

I have a chronic #csfleak for which I am prescribed opioids, but I still spend 23 hours a day in bed. Last year a palliative care doc informed me that my pain “isn’t valid to be treated because it’s not caused by cancer.”

Even my PCP is “truly sorry”. But he won’t do anything.

Sage Journals: Discover world-class research Subscription and open access journals from Sage, the world's leading independent academic publisher.

So what exactly makes a headache orthostatic anyway?

📄 New paper alert 📄

journals.sagepub.com/doi/full/10....

Thank you. I wish there was a dislike button!

Charlie Brown and Snoopy sit on a dock facing a body of water with their backs to the viewer. In a speaking bubble, Charlie Brown says, “What’s your wish this Christmas?” Snoopy answers in a thought bubble, “A cure.”

Merry Christmas to all and Happy Holidays to whoever celebrates all the other holidays this time of year! Five Christmases in bed from my #csfleak and counting. I’m not sure I even hope for a cure anymore.

Today is the 4th anniversary of my #spinalcsfleak. I was assembling a play kitchen for my daughter for Christmas and blew open my first CSF-venous fistula. Four years & 10 fistulas later, I am still mostly bedridden and housebound but I have made peace with possibly never being well again. #csfleak

📄 New Paper Alert! 📄

“Flow Void Sign”: Flow Artifact on T2-Weighted MRI Can Be an Indicator of Dural Defect Location in Ventral Type 1 Spinal CSF Leaks

Congrats to @neuroradlal.bsky.social, @dgleao.bsky.social , David Butteriss, @brainscandan.bsky.social - super useful - I'm a believer!!

Dana Goldberg post: I have shared the same bathroom with Sarah McBride on several occasions, and she never once made me uncomfortable. She did however help me fix my makeup. That congresswoman knows how to blend her foundation, which is more than I can say about Donald Trump.

They say the cover up is always worse.

for context NYC offered a $10k reward for any critical information about the homocide which is about the cost of a single 15 minute ambulance ride after UnitedHealthcare denies coverage bc the EMTs responding to the call were out of network

@swordsjew.bsky.social mentions this in _Wild Faith: How the Christian Right is Taking Over America_. It's basically "no furriner's gonna tell me I can't beat my kids".

YouTube video by Dr. Glaucomflecken No More General Anesthesia

One thing I didn’t expect in the wake of the CEO shooting is the sudden attention on health insurance policy. I have seen this video and the BCBS policy itself go viral on almost every platform. People are waking up. Real lasting change in healthcare is coming. youtube.com/shorts/vWA2a...

Health insurance is wild. You pay every month for months, years, decades, in case something catastrophic happens.

Then it does and the insurers are like yeah no not THAT kind of catastrophe.

Fascinating series of articles on CTD in Neurology in #FrontiersinNeurology including #CSFleak and orthostatic HA.

Great discussion and hypotheses- but surprising how little primary data underpins our current understanding. #knownunknowns

www.frontiersin.org/research-top...

Remember when "Ferris Bueller's Day Off" tried to teach us about tariffs and no one was paying attention

Fluid keeps your brain from crushing itself and shields your spine from shock – a neurologist explains what happens when it stops working Cerebrospinal fluid can sometimes leak or collect in the brain without an identifiable cause, leading to symptoms that can be difficult to diagnose.

#CSFleak "CSF has several critical functions. It protects the brain and spinal cord from injury by absorbing shocks. Suspending the brain in this fluid reduces its effective weight and prevents it from being crushed under its own mass."
theconversation.com/fluid-keeps-...

This is a very odd question, but for #exvangelical friends, does anyone know which Christian music artists are Christian nationalists? I think Skillet is (or at least they have insulting words for the #deconstructed) and I suspect newsboys as well. I’d like to clean up my playlist!

It’s difficult to connect on any platform. However, I’m an admin of a CSF leak group on Facebook and there are over 9,400 of us! You are more than welcome to join! Lurk, post, whatever works best
for you where you are. The support and info we share is wonderful. Many 🥄 to you too!

Hello new leaker friend! 👋🏻 waves from bed 👋🏻

Black and white photo from 1982 in an institution with two autistic boys in straight jackets strapped to a radiator.

Ivar Lovaas, creator of ABA therapy, slapping and yelling at an autistic child in abusive behaviorist methods, still used on autistic children today.

Sad child standing in a seclusion cell at school. Seclusion is solitary confinement.

Another sad looking child sitting in a seclusion cell.

Time to talk about the danger of RFK’s ableism. He repeats nonstop, that he never knew an autistic person growing up. In his era, autistics were institutionalized and schools didn’t have to educate autistic children. His bringing that up is painful for autistic people & it’s also a lie.
🧵👇

Would that the rest of the world listened to autistic people sounding the alarm bells about RFK for 20 years now. We knew he was a dangerous ableist before know he’s a dangerous ableist was cool. His erasure of his Aunt Rosemary has long pissed me off. bsky.app/profile/jenn...

Opinion | Trump's embrace of RFK Jr. is demoralizing for autistic people like me Kennedy sees autistic people as problems to be solved, not as people with disabilities who deserve to be accepted.

I’ve spent the last decade chronicling the #Autism rights movement and #Neurodiversity as a political movement. It had slow but gradual gains. But RFK Jr.‘s nomination to HHS takes a sledgehammer to those hard-won gains.
www.msnbc.com/opinion/msnb...

Spinal CSF Leak Foundation - Home - Spinal CSF Leak Foundation Intracranial hypotension due to spinal CSF leak is an important and under-diagnosed cause of new onset headache.

Hello Bluesky! We are a 501(c)(3) nonprofit health foundation focused on raising awareness, educating, & funding research for spinal CSF leaks. Our mission is to reduce the suffering of anyone affected by intracranial hypotension or spinal CSF leak.

You can learn more about us on our website:

BARMAID BECOMES BARMAN – GIRL RE-REGISTERED The re-registration of seventeen-years-old Ellen Caldwell, a Crewe barmaid residing at Martin-street, as a male and her appearance at the hotel where she is employed smartly attired in man’s clothing has brought to a conclusion a remarkable episode of transformation. Last summer she sought medical advice and an operation was performed at Manchester Royal Infirmary. The operation was successful and her father has taken the necessary steps to have her re-registered this time as a male. She has changed her name to Alan and Ellen the barmaid is now Alan the barman.

Fascinated by the sheer matter-of-factness of this story buried on page 8 of The Liverpool Daily Post, 29 March 1937 – “Ellen the barmaid is now Alan the barman.” Please update your address books. Now, what’ll you have?

Just arrived this morning and I’m just about to start reading!

Peds pharmacist mom problems: kid spikes a fever of 103.5 and I start a mental 5-day countdown and search for signs of Kawasaki Disease. 🥴