Top Tweets for #SpinalCSFLeaks
One thing I’ve learned from caring for patients with #spinalCSFleaks is that many already track their symptoms, upright time, treatments, and medications in notebooks or spreadsheets.
After seeing this repeatedly (and learning a lot from patients who have been doing this thoughtfully for years), I have built a simple app to help organize that information and generate a clear recovery timeline that can be shared with their doctors.
My hope is that making this information easier to track and export may help facilitate better care, and eventually research.
Hoping to release #Upright soon and will keep the community posted.
This #GivingTuesday, we invite you to consider making a donation & helping us in bringing hope & support to those suffering from #SpinalCSFLeaks — individuals who often feel voiceless, powerless & at times, hopeless in their struggle.
To Donate: https://t.co/TYtZUHX9kp
On #WorldBrainDay, join us in raising awareness about brain health & neurological disorders like #SpinalCSFLeaks
#CSFLeaks can significantly impact our brain, emphasizing the need for greater awareness & education for timely diagnosis & treatment to prevent serious complications.
Register für #ME #ChronicFatigueSyndrome
#CFS Betroffene
Ich hoffe, dass es bald solches für #spinalCSFleaks gibt. Sowohl für spontane #SIH als auch iatrogen Betroffene / #PDPH #chronicPDPH
Großartige Sache, dass es in Deutschland jetzt ein ME/CFS-Register gibt!
https://t.co/5GeqUalyiI
Nice review of #SIH and #spinalCSFleaks in this chapter by @NeuroradLal et al. @spinalCSFleak @SpinalCSFCanada
New Chapter published:
CSF Hypotension and CSF Leaks, by LL Carlton Jones et al
Clinical Neuroradiology, the ESNR textbook
Available for the ESNR members.
https://t.co/3fnsrQRnRC
🆕 Another great work by the Freiburg Team -Keyhole Fenestration for Cerebrospinal Fluid Leaks in the Thoracic Spine: Quantification of Bone Removal and Microsurgical Anatomy- highlighting a minimally invasive surgical approach for all types of #spinalCSFleaks
🔓⬇️⬇️⬇️
surgical closure of spinal #CSFleak #SIH: diameter of bone removal as small as a 10-cent coin 🪙! (...and surgery is performed through that....)
#NeuroTwitter @JrgenBeck & the Freiburg CSF Team
👇
https://t.co/2CmNxzMUvH
Please help us spark hope, advance research and bring healing for #SIH/#spinalCSFleaks.
Illuminate lives with your heartfelt donation: https://t.co/uOP9CCweDT
📌Please take a moment to bookmark this thread and kindly keep in mind that a NORMAL opening pressure (OP) SHOULD NOT rule out #spinalcsfleaks, #SIH
Did you know?
#spinalcsfleaks #SIH can cause serious complications.
For more information on #spinalcsfleak #SIH please visit: https://t.co/gs7FmUxxE9
Chronic, untreated ventral #spinalCSFleaks can cause superficial siderosis (SS), a rare condition characterized by hemosiderin deposits in the central nervous system (CNS).- Surgical closure of #spinalcsfleak improves symptoms in patients with (SS)
🆕 & Open Access:
⬇️⬇️⬇️⬇️
New work from Freiburg&Bern #SIH #spinalSCFleak #SS:
👉8.5% of 142 SIH patients showed superficial siderosis
👉2/3 of these did not have orthostatic headache
👉Symptoms improved after surgical closure of the leak
Credits to @JrgenBeck & Team
https://t.co/gbE4ZkUuqt
Recorded video is now available!! This webinar is intended to guide physicians in the systematic evaluation and management of patients suspected of having #spinalCSFleaks #SIH #CSFVF #PDPH
▶️ https://t.co/9IJOqIe1Ft
When @AndrewCallenMD was asked about his motivation to focus on #spinalCSFleaks, it all started in residency. A patient misdiagnosed with ALS turned out to have a treatable #CSFleak, highlighting the underserved needs of this patient group.
Thank you for your dedication!
Meet @AndrewCallenMD neuroradiologist and Spinal CSF Leak Foundation medical advisory board member. https://t.co/mFHVcUzyN4
Please help us spark hope, advance vital research and bring healing for #SIH/#spinalCSFleaks.
Illuminate lives with your heartfelt donation: https://t.co/TYtZUHX9kp
#CSF-venous fistulas are an increasingly recognized type of #spinalCSFleaks that can be challenging to detect.
New study by @PeterGKranz and @DukeNeurorad, demonstrates that in most patients with #SIH, resisted inspiration improves visualization of CSF-Venous Fistulas.
⬇️⬇️⬇️⬇️
New paper now out in @TheAJNR from @DukeNeurorad team examining utility of resisted inspiration in patients with SIH caused by CVFs.
https://t.co/PnqXXSBzGF
Great interview from @spinalCSFleak with @AndrewCallenMD, regarding this recently published paper.
⬇️⬇️⬇️⬇️
#spinalcsfleaks
Dr. Callen discusses his recent case report, “A Causative Role for Remote Dural Puncture and Resultant Arachnoid Bleb in New Daily Persistent Headache.” https://t.co/NDHrcLY9WG via @YouTube
#spinalCSFLeakawarnessweek2023
We would like to take this opportunity to share some of our research findings and grant initiatives.
#spinalcsfleaks #SIH #research
An exclusive glimpse into the outcomes of an important study, funded by our sister organization @spinalCSFleak that unveils again how #spinalCSFleaks/#SIH profoundly impacts individuals' quality of life. #SpinalCSFLeaks #SIH
Research update: Dr. Deborah Friedman's Foundation-funded study on quality of life in SIH will be published in the journal Neurology! Here is a poster presentation of the study's findings. More info here: https://t.co/c7RvfPlaUe
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