CSF Leak Association
@csfleakinfo
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UK-based charity promoting awareness of cerebrospinal fluid (CSF) leaks; No. SC046319. New main Twitter account @csfleakuk
Scotland, England, Wales & NI
Joined March 2014
#rarediseaseday2022.Those living with CSF leaks are considered rare. We are working hard for better diagnosis, treatment and management.
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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
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Free SIH webinar today 4pm UK time!.Speakers of the ESMINT webinar are Jürgen Beck and Tomas Dobrocky.#csfleak #SIH #spinalcsfleak #headache #orthostaticheadache #uprightheadache.
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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.
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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!.
bmjopen.bmj.com
Objectives To present the results of a survey of patients with spontaneous intracranial hypotension (SIH) secondary to spinal cerebrospinal fluid (CSF) leak, documenting the patient experience of its...
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CSF leak patients. please take the survey! .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
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RT @PeterGKranz: Hey look who made the news! @TimAmrheinMD talking CSF leak detection with new photon counting CT @DukeRadiology @Siem….
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RT @brainscandan: @AndrewCallenMD That’s a beauty! You inspired me to have a go with cinematic VRT using one of my dynamic CTMs of a ventra….
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RT @brainscandan: I’ll second that! Whilst #spinalCSFleak is my neuroradiology passion I enjoy hunting down skull base leaks too, so it was….
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RT @rebekahcjoy: A #spinalCSFleak is #notjustaheadache per se #duratear can be the cause, nor is it only “spontaneous” #SIH #lumbarpuncture….
thebrowser.com
Baiqu: Welcome to The Browser, today I'm with Jodi Ettenberg [https://twitter.com/legalnomads], who was once a lawyer, then a travel food writer, until she became disabled after a faulty lumbar...
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RT @BeckyHill3: Finally the studies are telling us what patients have known for a long time but often were not heard. Will this mean that p….
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RT @NeuroradLal: Interesting explanation for the truly myelography negative patients. but I wonder how many of these pts actually have a d….
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RT @kingshealth: "Spontaneous intracranial hypotension is an under recognised and under diagnosed cause of debilitating headaches.". We cha….
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RT @rebekahcjoy: This is quite momentous 🙏@KingsCollegeNHS & @GSTTnhs following in footsteps of @CedarsSinai & @DukeHospital 🇺🇸 https://t.c….
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RT @Bohemian_Wu: So excited that our study on the time sequence of brain MRI findings in #SpinalCSFleak has been published in @JCephalalgia….
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RT @NeuroradLal: Curing patients with CSF leak with percutaneous fibrin glue injection is effective, safe and incredibly rewarding! Another….
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RT @ConnieDelineMD: Attendees at #SIH2021 today are hearing about the anatomy + pathogenesis of #spinalCSFleak from @WouterSchievink @Cedar….
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