"She added me to a private CSF leak group on Facebook with several thousand leak patients from around the world." My late wife joined that group when it was 80

"She added me to a private CSF leak group on Facebook with several thousand leak patients from around the world." My late wife joined that group when it was 800 people in ~2011. Today we are closing in on 9,000 people. Back in the beginning a few people though that my late wife Karen started that group. She didn't. She was just a prolific poster there helping a lot of people as she learned about Leaks in her medical studies. Part of Karen's saga, and mine, is published on the CSF Leak Foundation website here "When Pain is Relentless" : https://spinalcsfleak.org/when-pain-is-relentless/ https://spinalcsfleak.org/when-pain-is-relentless/ A few years later Karen's saga also became part of the documentary Pain Warriors. Which can be watched for free on Amazon Prime, TubiTV and Youtube. It is also on iTunes. Our goal is to raise awareness of CSF Leaks and the devastation they cause to families like mine. Karen took her own life due to the pain from CSF Leaks and being poisoned by the flourquinilone antibiotic Levaquin (NEVER Take that or Cipro et.al. which I can back up with FDA data, I want to focus on Leaks here). The top doc in the world Dr Schievink [1] has estimated that just under 100% of people that have CSF Leaks have some type of under lying Connective Tissue Disease. Karen saw him and the docs that are mentioned in the parent article that were there at the time in the 2011-2013 time frame. I had Karen's spin exhumed and it was sent to Duke to be studied. Much was learned from it to help those that came later. Sadly not nearly enough. All of this is documented in what has become known as Karen's Journal. Free to read on Karen's website. Any profit from the sale of physical books go directly to the Spinal Leak Foundation. [2] I also get nothing from the Pain Warriors Documentary. [3] 1: https://spinalcsfleak.org/schievink-surgical-history/ https://spinalcsfleak.org/schievink-surgical-history/ 2: Sadly the certificate expired so please ignore the scary warning until I get that fixed. I also need to fix a link that I see is broken to the PDF that was used in the documentary. http://www.kpaddock.com/book http://www.kpaddock.com/book 3: Pain Warriors on YouTube: https://youtu.be/WB60ZCiYwgk?si=PAVsDOVDcEdoJ-jC https://youtu.be/WB60ZCiYwgk?si=PAVsDOVDcEdoJ-jC Just typing this has me crying yet again. What we desperately need is better imaging technology. When it comes to finding Leaks with today's methods we are still in the Stone Knives and Bearskin era. CSFluid is almost identical to water making it hard to differentiate unless the leak is large. It does not take a large leek to cause devastating headaches. If you have any ideas, please speak up.