#CSFleak
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dolanrider.bsky.social
#CSFleak #SIH
theajnr.bsky.social The American Journal of Neuroradiology @theajnr.bsky.social · Mar 12
"Maximizing the Conspicuity of CSF-Venous Fistulas on CT Myelography: Assessment of Contrast Density and Timing Effects"

@PeterGKranz @TimAmrheinMD @AjayMadhavanMD

doi.org/10.3174/ajnr...
March 12, 2026 at 4:40 PM
dolanrider.bsky.social
#CSFLeak #SIH
theajnr.bsky.social The American Journal of Neuroradiology @theajnr.bsky.social · Dec 7
"Transvenous Embolization versus Surgical Intervention for CSF Venous Fistulas: A Systematic Review and Meta-Analysis"

doi.org/10.3174/ajnr...

@behnam_jazayeri @The_ASSR
December 7, 2025 at 7:59 PM
dolanrider.bsky.social
#CSFLeak #SIH. I had surgical intervention last week after embolization failed earlier this year. Sealing with CT guided fibrin glue also failed a couple of years ago.

It's been 20 years since my symptoms started. It's just a waiting game now. Thank you for keeping us hopeful.
December 7, 2025 at 7:58 PM
dolanrider.bsky.social
#CSFleak #SIH
theajnr.bsky.social The American Journal of Neuroradiology @theajnr.bsky.social · Nov 23
"The Role of Ferumoxytol-Enhanced MR Venography in Transvenous Embolization of CSF-Venous Fistulas"

doi.org/10.3174/ajnr...

@The_ASSR
November 23, 2025 at 4:30 PM
dolanrider.bsky.social
#CSFleak #SIH
theajnr.bsky.social The American Journal of Neuroradiology @theajnr.bsky.social · Nov 9
"Revisiting a Rare Anomaly Described 25 Years Ago in the AJNR: A Journey from Pediatric Hemifacial Microsomia and Middle Cranial Fossa Aplasia to CSF-Lymphatic Fistula and Spontaneous Intracranial Hypotension as an Adult"

doi.org/10.3174/ajnr...

@AndrewCallenMD @The_ASSR
November 9, 2025 at 8:31 PM
dolanrider.bsky.social
#CSFleak
June 5, 2025 at 9:47 AM
dolanrider.bsky.social
#CSFleak #SIH
csfleak.bsky.social CSF Leak Association @csfleak.bsky.social · Apr 5
🚨 ONE WEEK TO GO! Join us on 12th April at 2 PM as Mr Parag Sayal shares expertise on surgical options for managing CSF leaks. Still time to register 👉🏻 csfleak.uk/event/webina...
#CSFLeakAssociation #CSFleak
April 5, 2025 at 10:28 AM
dolanrider.bsky.social
##CSFleak #SIH
theajnr.bsky.social The American Journal of Neuroradiology @theajnr.bsky.social · Mar 13
"CSF-Venous Fistulas Arising Intraosseously within Bone Remodeled by Meningeal Diverticula"

doi.org/10.3174/ajnr...

@AjayMadhavanMD @vinil_shah @LeviChazen @iantmark
@MarkMamloukMD @The_ASSR #CSFLeak
March 13, 2025 at 3:29 PM
dolanrider.bsky.social
#CSFleak #dementia
theajnr.bsky.social The American Journal of Neuroradiology @theajnr.bsky.social · Mar 12
"Among patients with bvFTD sagging brain syndrome and no detectable spinal CSF leak, isolated azygos vein stenosis may be a cause of excessive spinal CSF loss and stent placement of the azygos vein stenosis may result in prompt and dramatic resolution of symptoms."
March 12, 2025 at 3:24 PM
dolanrider.bsky.social
#CSFLeak #SIH After a wait of nearly 2 years for the #NHS to try and fix my CSFLeak my appointment has been cancelled due to protocols not being signed off, with no reschedule date. Thank you #NHS for giving me hope after 20 years of hell and then taking it away like some sick joke.
February 18, 2025 at 7:03 PM
dolanrider.bsky.social
#CSFLeak. Treatment of patients with spinal #CSFLeaks in the UK needs a fundamental rethink. The leaks cause severe neurological problems. So you need CSFLeak specialists, neurologists, surgeons and embolization experts to coordinate. It fails miserably. 2yrs since finding it and still waiting!!!
February 11, 2025 at 11:31 AM
dolanrider.bsky.social
If you are diagnosed with a CSFLeak please do not underestimate the depression/anxiety effect!

"Our results, with substantially elevated baseline scores on the PHQ-8 and SSD-12, emphasize the severe impact of SIH on mental health" #CSFLeak #SIH

www.frontiersin.org/journals/neu...
Frontiers | More than a headache—somatic and mental symptom burden in spontaneous intracranial hypotension before and after surgical treatment
IntroductionPatients with spontaneous intracranial hypotension (SIH) frequently present with several symptoms and impaired mental health. This study systemat...
www.frontiersin.org
February 9, 2025 at 2:21 PM
dolanrider.bsky.social
"We present a case of iatrogenic IH following traumatic dural injury due to SCS lead migration complicated by the development of a large pseudomeningocele, CVF and CSF leaks" #CSFLeak

www.ahajournals.org/doi/10.1161/...
American Heart Association Journals
www.ahajournals.org
February 5, 2025 at 5:56 PM
dolanrider.bsky.social
#CSFleak. Off to the hospital to check the double vision status. It feels like it's stabilised with my daily routine of avoiding any sudden head movements. Fingers crossed 🤞
November 18, 2024 at 8:08 AM
dolanrider.bsky.social
#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-...
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.
theconversation.com
November 16, 2024 at 7:15 PM
survivorliteracy.com
Strange symptoms spark a scary search.
#eds #zebra #tests #labs #ms #csf #csfleak #ehlers #ehlersdanlos #hypermobile #chronic #chronicpain #jointpain #runnynose #neuropathy #doctor #pseudonym
Zebra Files 7) Did Not See This Coming
The visit to Dr. Handjob revealed mixed news regarding health concerns. While he initially ruled out a CSF leak, he suggested other possible diagnoses: Ehlers Danlos Syndrome, Cerebral Spinal Fluid Leak, and Multiple Sclerosis. Diagnostic tests will clarify the situation, leaving uncertainty about the outcomes but maintaining a sense of humor.
invisiblymisdiagnosed.com
July 23, 2025 at 12:01 PM
pumpkinstars.bsky.social
like i will take a medicine, mark it off, be reaching to put it back in the box, and be like “wait did i take this already??”

and it’s still in my mouth. so i have to check and feel for it with my tongue to make sure.

i am a goldfish memory

#BrainFog #TBI #CSFLeak #NEISvoid
March 26, 2026 at 7:15 AM
pumpkinstars.bsky.social
i’ve been feeling the urge to draw again and, lately i’ve been able to sometimes!

the birthday box for my friend
and some coloring just some colors

and it had me thinking how important it is for me, as nearly bedridden, to feel those textures.

#NEISvoid #MECFS #POTS #CSFLeak
March 10, 2026 at 7:26 PM
juchti.bsky.social
Judith Schoßböck (43)
28.01.81 – 10.12.24
@judyintheskynet
Judith hatte #MEcfs, ein #CSFleak, schweres #MCAS u #POTS. Mit ihrem Partner gründete sie das Black Ferk Studio und klärte noch vom Bett aus mit Kunst auf – gezeigt wurde diese u.a. in der Wiener Ausstellung "CRASH!"
20/
Das Bild zeigt Judith, die, im Bett liegend, in die Kamera lächelt.
June 12, 2026 at 3:48 PM
cppedsa.bsky.social
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it

www.chronicpainpartners.com/cerebral-ven...

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology
Infographic about Cerebral Outflow Disorder, related to Ehlers-Danlos Syndromes (EDS). At the top left is a circular EDS Awareness logo. The text reads: “Cerebral Outflow Disorder: Signs can include: Pulsatile Tinnitus Pressure Headaches IIH Brain Fog Vision Problems” There is an image of a person’s head in profile with a glowing neural network over the brain, and graphic icons of upward and downward arrows suggesting blood flow. The bottom text on a teal background reads: “What it is and Why EDS Patients Should Know About it chronicpainpartners.com”
March 10, 2026 at 12:14 PM
cppedsa.bsky.social
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it

www.chronicpainpartners.com/cerebral-ven...

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology
Infographic about Cerebral Outflow Disorder, related to Ehlers-Danlos Syndromes (EDS). At the top left is a circular EDS Awareness logo. The text reads: “Cerebral Outflow Disorder: Signs can include: Pulsatile Tinnitus Pressure Headaches IIH Brain Fog Vision Problems” There is an image of a person’s head in profile with a glowing neural network over the brain, and graphic icons of upward and downward arrows suggesting blood flow. The bottom text on a teal background reads: “What it is and Why EDS Patients Should Know About it chronicpainpartners.com”
January 30, 2026 at 1:14 PM
cppedsa.bsky.social
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it

www.chronicpainpartners.com/cerebral-ven...

#EhlersDanlosSyndrome #EDS #hEDS #HSD #Hypermobility #IIH #CSFLeak #Chiari #AAI #CCI #Headache #Spoonies #Zebras #MedEd #MedSky #Doctors #neurology
Infographic about Cerebral Outflow Disorder, related to Ehlers-Danlos Syndromes (EDS). At the top left is a circular EDS Awareness logo. The text reads: “Cerebral Outflow Disorder: Signs can include: Pulsatile Tinnitus Pressure Headaches IIH Brain Fog Vision Problems” There is an image of a person’s head in profile with a glowing neural network over the brain, and graphic icons of upward and downward arrows suggesting blood flow. The bottom text on a teal background reads: “What it is and Why EDS Patients Should Know About it chronicpainpartners.com”
November 26, 2025 at 1:06 PM
judyintheskynet.bsky.social
Let's see whether my body agrees ;)))
#verysevereME
#CSFleak
#MCAS

I need to write an health update because many asked at some point.

On the list. :) but it's not rosy ;)
#MECFS
#severeME
December 3, 2024 at 5:38 PM
judyintheskynet.bsky.social
Can you imagine having an illness that makes you wait 3 months to see your love, & after 3 min you need to send him away again, because your nervous system can't cope?

My disease may take away my ability to express my love physically.
But it will never take away my spiritual one.
💗🐌
#CSFleak
#MECFS
November 28, 2024 at 9:40 AM