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

If I'm sitting or standing for about a half hour I feel a headache coming on. If I'm up for a full hour I get a migraine+nausea that lasts for a couple days. We think its because of a Cerebrospinal Fluid Leak. If you know anyone who gets sick from being upright like this, look into it #csfleak

#CSFleak #SIH

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

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”

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

if anyone could tell me why the blood patch makes my lower back spasm and cramp up, I'd love to know the answer cause fuck me oww (god bless heating pads)

here's hoping 40cc of blood injected into my spinal column fixes my leaking brain bag

#ChronicIllness #csfleak

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”

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

LIQUORLECKS BEIM BERGDOKTOR AHHHH und er erklärt Liquorunterdruck auch noch gut, ich schreie #bergdoktor #sih #csfleak #medbubble #medibubble

Caerphilly doctor felt like her head would explode due to rare condition While at a conference in Malta, she was hit by a rare, debilitating brain condition.

Nice story about #CSFLeak.

#MEspine

"Digital Subtraction Myelography for the Detection of Type 1 Spinal CSF Leaks: Evaluation of Temporal Characteristics and Diagnostic Value"

doi.org/10.3174/ajnr...

@Niklas_Luetzen; @ZanderCharlotte; @KathaDCwolf; @JrgenBeck; @Uniklinik_FR; @The_ASSR

#CSFLeak

"Systematic Review of the Predictive Value of Negative Brain or Low Probability Brain MRIs in Patients with CSF-Venous Fistulas"

doi.org/10.3174/ajnr...

@The_ASSR @AjayMadhavanMD

#FellowsJournalClub #CSFLeak

News und Projekte - Black Ferk Studio Hier findest du einen Überblick über aktuelle und vergangene Ausstellungen, Performances, Vorträge und Projekte des Black Ferk Studios.

6/6 ....in denen Aber-Tausende schwer Kranke täglich um das Überleben kämpfen, zum Ausdruck gebracht.

In tiefer Dankbarkeit 🙏
blackferkstudio.com/news-und-pro...

#MCAS #Liquorverlustsyndrom #CSFLeak #POTS #MEcfs #PostVac #LongList #heimtückischeKombination

"Consensus Guidelines on Diagnostic Brain and Spine Imaging of Spontaneous Intracranial Hypotension"

doi.org/10.3174/ajnr...

@The_ASSR @PeterGKranz @iantmark @vinil_shah @MarkMamloukMD @LeviChazen @TroyHutchins3 #SIH #CSFLeak

#CSFLeak #SIH

#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.

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”

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

#CSFleak #SIH

I have a provisional date for surgery this Friday. Hopefully first thing in the morning so I will be home by the afternoon. I just need to hold on til then. #spinalcsfleak #csfleak

#CSFleak #SIH

"CSF-Venous Fistula Transvenous Onyx Embolization: Evaluation of Onyx Migration into the CSF and Potential One-Way Physiology"

doi.org/10.3174/ajnr...

#OpenAccess #CSFLeak

@iantmark; @Mayoradiology; @The_ASSR

"Evaluation of Spontaneous Intracranial Hypotension Probabilistic Brain MRI Scoring Systems in Normal Patients"

doi.org/10.3174/ajnr...

#EditorsChoice #CSFLeak @iantmark

"Advanced Imaging of Type 2 Spinal CSF Leaks with Ultra-High-Resolution Conebeam CT Myelography"

doi.org/10.3174/ajnr...

@The_ASSR #CSFLeak

11/ #CSFLeak now jumps to the top of the list! So now what?

Blood patch

MRI spine

Myelogram

CT myelogram

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.

Strange symptoms spark a scary search.
#eds #zebra #tests #labs #ms #csf #csfleak #ehlers #ehlersdanlos #hypermobile #chronic #chronicpain #jointpain #runnynose #neuropathy #doctor #pseudonym

An illustrated white chicken sitting in the sand on the beach, possibly making a sandcastle, next to it is a lobster holding an umbrella. The caption reads "I am stronger than my problems."

I have my CT myleogram scheduled for Tuesday, August 5th, very early in the morning, for the suspected spinal CSF leak. I'm really fucking nervous and so over having to lie down all the time! This is day 8 feeling this way. Does anyone who's had a #CSFleak have any words of advice?
#EDS #spoonie

This weekend I did a lot of research on Red Light Therapy for my traumatic brain injury (and fine lines on my face). Anyone else into that?

#redlight #redlighttherapy #nanometers #glitch #pixelart #traumaticbraininjury #vss #tinnitus #csfleak

"Additional Diagnostic Value of Conebeam CT Myelography Performed after Digital Subtraction Myelography for Detecting CSF-Venous Fistulas"

doi.org/10.3174/ajnr...

@AjayMadhavanMD @the_ASSR #CSFLeak

When Gravity Wins: Living with a CSF Leak (and Getting Anyone to Listen) By Antonia @ UnremarkableMe – Published June 2025Living with a chronic illness is like trying to solve a puzzle where the pieces keep changing shape. You get used to the daily discomforts, the strange...

When your brain starts sinking and no one believes you, it’s not just in your head. It’s a CSF leak—and it’s time we talked about it. No jargon. Just truth.
#CSFLeak #EDS #ChronicIllness #UnremarkableMe #EDS&Chiari #PatientVoices #hEDS #ChiariMalformation

www.unremarkableme.com/post/when-gr...

"Assessing the Diagnostic Value of Brain White Matter Hyperintensities and Clinical Symptoms in Predicting the Detection of CSF-Venous Fistula in Patients with Suspected Spontaneous Intracranial Hypotension"

doi.org/10.3174/ajnr...

@the_ASSR #CSFLeak #EditorsChoice

#CSFleak