CSF leaker since 2015. Personal researcher into CSF leak cause, detection and treatment.
Joined January 2013
- Tweets 1,174
- Following 101
- Followers 136
- Likes 936
38 Photos and videos
Paul Kaufmann retweeted
3 Apr 2025
Dr Deborah Friedman’s study of quality of life scores of patients with #CSFleak were significantly worse than in the validation cohorts of patients with AIDS and cancer. 64% wishing to be dead, 23% suicidal behavior. #spinalcsfleak #patientcare #chronicillness #patientsuicide
2 Apr 2025
We lost yet another long-term CSF Leaker to suicide. It’s getting almost predictable.
Being hopelessly bedbound FOR YEARS in severe pain, plus widespread neuro inflammation is a recipe for disaster.
Anybody listening?!
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Paul Kaufmann retweeted
🚨We’re excited to share our amazing speaker lineup and program for the 2nd Canadian SIH Conference, taking place May 31–June 1, 2025 (Toronto & virtual).
📍Please save the date - Registration will open soon!
>>spinalcsfleakcanada.ca/home-…
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8 Dec 2024
I’ve left Planet X for bluer skies. You can connect up with me at @pmkmann if you make the trip.
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19 Oct 2024
Hi friends. I’m going to take a break from X for a while. My FB Messenger channel will be open if you want to reach me.
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13 Oct 2024
Like @CSFLeakMatters says, thank you for all you do to keep the cause alive and moving forward toward healing for all leakers.
13 Oct 2024
And the leak community is incredibly thankful for all YOU do, @SpinalCSFCanada.
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Paul Kaufmann retweeted
11 Oct 2024
🧵 Witnessing a seizure can be terrifying—but knowing how to help could save a life. Here's what you need to do when seconds count...
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11 Oct 2024
Great expansion to the team!
🎉Exciting Announcement🎉
Please join us in welcoming the newest members of our Medical Advisory Team! We believe their expertise and insights will greatly advance our efforts as we continue our mission to support those affected by #SpinalCSFLeak #SIH
spinalcsfleakcanada.ca/spina…
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Paul Kaufmann retweeted
1 Oct 2024
Join us in raising awareness for #AVM a rare & often misunderstood condition. Whether you’re here to learn, share your story, or support others, we’re united in making a difference. AVMs are rare, but with TAAF, we are #UnitedandRare! #TAAF #arteriovenousmalformation
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2 Oct 2024
For those of you that may have an interest in such things, today my brother released his book, memoir actually, on drugs and addiction amongst doctors.
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27 Sep 2024
An apple a day
Keeps the doctor away
But that’s okay
‘Cause there aren’t any anyway.
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10 Sep 2024
This is a problem for all of us. Keep you eyes open for it creeping up in yourself and in others. #sih #WorldSuicidePreventionDay
10 Sep 2024
#WorldSuicidePreventionDay
One study noted that more than half of #SIH patients expressed a wish to be dead, and nearly a quarter have demonstrated suicidal behavior. Please show compassion & offer support.
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7 Sep 2024
I wonder how the peripheral nerves would be affected by one who is leaking CSF? #sih
7 Sep 2024
Exciting discovery: CSF flow isn't confined to the brain and spinal cord—it also extends to peripheral nerves! @ScienceMagazine science.org/doi/10.1126/scia…
Groundbreaking research from @UFHealth @UF
#neurotwitter #neuroscience #AcademicChatter
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Paul Kaufmann retweeted
7 Sep 2024
Exciting discovery: CSF flow isn't confined to the brain and spinal cord—it also extends to peripheral nerves! @ScienceMagazine science.org/doi/10.1126/scia…
Groundbreaking research from @UFHealth @UF
#neurotwitter #neuroscience #AcademicChatter
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6 Sep 2024
My working memory continues to decline. But as long as I continue to remember what it is I forgot, then I think I’m still ok, I think. #SIHHumor
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5 Sep 2024
In case you haven’t seen this one before: Headaches Due to Low and High Intracranial Pressure
journals.lww.com/continuum/a…
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4 Sep 2024
Hi Dr @AndrewCallenMD as a patient looking to understand initial cause of SIH would you be willing to provide me with a copy of your new paper on MRI signs of IIH? (Right now it is behind a pay wall)
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30 Aug 2024
Is an upper cervical embolization incompatible with an upper cervical chiropractic adjustment of C1 (ie so called NUCCA)? @PeterGKranz @dgleao @MarkMamloukMD
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25 Aug 2024
A biomarker is so very important for all types of CSF leaks! Keep going!
Happy to share our work towards developing a #CVF #SIH biomarker! @MayoRadiology @spinalCSFleak ajnr.org/content/early/2024/…
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22 Aug 2024
Oh yes! I think understanding as much as possible about CSF flow, production and re-absorption is critical to our understanding of CSF leaks.
21 Aug 2024
💧🔁 🧠 'CSF Flow Dynamics: New Schools of Thoughts - Ian Craven'
👀 I'd love to catch this session
#CSF #CerebrospinalFluid #CSFleak #ASPNR25
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12 Aug 2024
Any thoughts on the kind of leak that a PCCT won’t pick up well?@KCMartinStone @WBrinjikji @PeterGKranz
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