UK-based charity promoting awareness of cerebrospinal fluid (CSF) leaks; No. SC046319. New main Twitter account @csfleakuk
Scotland, England, Wales & NI
Joined March 2014
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- Followers1.6K
- Likes1.1K
#rarediseaseday2022
Those living with CSF leaks are considered rare. We are working hard for better diagnosis, treatment and management. rarediseaseday.org/
For the past 2 years, we have been working non stop with a large group of doctors to create UK guidelines for the diagnosis, treatment and management of spinal CSF leaks. We look forward to our community having equitable access!
#rarediseaseday2022 #csfleak #SIH #headache
esmint.eu/news/spontaneous-i…
Free SIH webinar today 4pm UK time!
Speakers of the ESMINT webinar are Jürgen Beck and Tomas Dobrocky
#csfleak #SIH #spinalcsfleak #headache #orthostaticheadache #uprightheadache
Fantastic results in this study on @WBrinjikji's minimally invasive treatment for #CSFVenousFistula
Clinical and imaging outcomes of cerebrospinal fluid-venous fistula embolization ⬇️
#spinalCSFleak #neuroIR
jnis.bmj.com/content/early/2…
bmjopen.bmj.com/content/12/1…
A huge thank you to all who took part in our Patient Survey 9 months ago & to those who worked on this paper. You made this all-important publication possible. Here's to opening more eyes and ears!
CSF leak patients...please take the survey!
myonlinesurvey.co.uk/myneuro…
My Neuro Survey is the biggest single source of patient experience data for commissioning services for people with neurological conditions & lobbying to improve treatment, care & support
CSF Leak Association retweeted
Hey look who made the news! @TimAmrheinMD talking CSF leak detection with new photon counting CT @DukeRadiology @SiemensHealth
CSF Leak Association retweeted
That’s a beauty! You inspired me to have a go with cinematic VRT using one of my dynamic CTMs of a ventral #spinalCSFleak at T4-5. Not quite as nice as yours but I’ll keep playing in syngo.via with some of my other cases #SIH @spinalCSFleak @csfleakinfo @csfleakaware
CSF Leak Association retweeted
I’ll second that! Whilst #spinalCSFleak is my neuroradiology passion I enjoy hunting down skull base leaks too, so it was great to write about them for this volume.
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CSF Leak Association retweeted
Finally the studies are telling us what patients have known for a long time but often were not heard. Will this mean that patients are finally ‘consented’ properly & supported & helped afterwards. #PDPH #SpinalCSFLeak #ItsNotJustAHeadache @csfleakinfo
painmedicinenews.com/Online-…
CSF Leak Association retweeted
Interesting explanation for the truly myelography negative patients.. but I wonder how many of these pts actually have a difficult to identify / ‘shy’ CVF…We need better methods to detect cvfs without repeated exposure to ionising radiation in these tricky cases @csfleakinfo
Frontiers | Spontaneous Intracranial Hypotension Without CSF Leakage—Interesting explanation for a poorly understood syndrome #SIH @PeterGKranz frontiersin.org/articles/10.…
CSF Leak Association retweeted
"Spontaneous intracranial hypotension is an under recognised and under diagnosed cause of debilitating headaches."
We chat to @NeuroradLal from @GSTTnhs and @KingsCollegeNHS about her team's pioneering #neuroscience work.
▶ Full article here: bit.ly/2ZqeeTC
CSF Leak Association retweeted
So excited that our study on the time sequence of brain MRI findings in #SpinalCSFleak has been published in @JCephalalgia.
According to this study, the onset–neuroimaging interval should be considered when using brain MRI findings or #neuroimaging scores for diagnosing #SIH.
CSF Leak Association retweeted
Curing patients with CSF leak with percutaneous fibrin glue injection is effective, safe and incredibly rewarding! Another amazing talk and pearls from @MarkMamloukMD 👏🏾👏🏾 #SIH2021 #spinalcsfleak
Decubitus CTM and fibrin glue injection for diagnosis and treatment of #spinalCSFleak caused by CSF-venous fistulas. @MarkMamloukMD stresses the importance of technique in diagnosis and treatment - getting needle at junction of diverticulum and vein crucial to success. #SIH2021
CSF Leak Association retweeted
Attendees at #SIH2021 today are hearing about the anatomy + pathogenesis of #spinalCSFleak from @WouterSchievink @CedarsSinai
