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

Day 3 of leakweek is all about symptoms of #spinalcsfleak, which go far beyond a headache or positional head pain and are often system and debilitating. Here are our myths and facts for this aspect of the condition:

#spinalCSFleak #becauseyourduramaters

Efficacy of Traditional Epidural Patching versus Patching within Spinal Longitudinal Extradural Collections for Ventral Dural Cerebrospinal Fluid Leaks | Radiol... Patching within spinal longitudinal extradural collections (SLECs) significantly improved rates of resolution of organized SLECs compared with traditional methods, although overall efficacy for ven...

Epidural patching for #spinalCSFleak continues to be refined. @andrewcallenmd.bsky.social

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

Hello world!

I’m a (recovered) #spinalCSFleak patient & a believer that patient lived-experiences are critical inputs to advancing medical research.

(Not an MD)

Some of my interests:
#SIH
#EDS #hEDS
#autoimmunity
#genetics
#connectivetissue
#MCAS
#chronicillness
#disability
#ADHD
#chronicpain

This is wonderful. Thank you so much. Would it be possible to add #spinalcsfleak? It’s comorbid for many with #heds/#eds/#CTD and can be so debilitating long term.

Truth. And it may be possible for some initially with #spinalcsfleak. But the combination is absolutely relentless.

RibbonRx Raising Awareness About Life

I don’t blog anymore due to my cognitive issues, but if you’d like to read about my journeys with #mentalhealth, #chronicilless, #chronicpain, or specifically ##endometriosis, #infertility, #prolactinoma, #POTS, #aneurysm, or #spinalcsfleak, #csfleak… I have a blog at ribbonrx.com!

Totally agree with this. I have a friend who has a #spinalcsfleak like me. Technology in Canada can’t find it. Her doc suggested MAID because she didn’t know what else to do. My friend came to the US, had her leak found, and now her doctor in Canada is all, oh I’ll do whatever I can to help you. 🙄

Hi there! Doubt anyone will see this but I’m a medically retired peds PharmD and a fierce advocate for #spinalcsfleak care. I’ve been bedbound and housebound for nearly 4 years due to CSF-venous fistulas. I love medicine, books, and cats.