In August 2012, I developed a massive central disc herniation at L4/L5. Almost overnight my pain level shot up off the chart, I couldn't walk at all, my genitals and perianal area became completely numb and I was incontinent. I went to the emergency room, and after an MRI of my lumbar spine was performed, I was sent by ambulance to a larger hospital for emergency spinal decompression by a neurosurgeon. The surgery did alleviate the indescribable pain but the nerve damage was so extensive and severe (pre-op) I am now living with a rare chronic and progressive neurological and musculoskeletal disorder called Cauda Equina Syndrome (CES).

Anyone diagnosed with CES, only a couple of years ago, will probably tell you the first thing they did once they got home from the hospital was to hit Google. Aside from a succinct Wikipedia entry, there was essentially a black hole of open, evidence-based, public information about Cauda Equina Syndrome. Before the Big Bang of our socially-connected web, and back to the top of the list of google results a few years back, I and manyff others depended on one website for learning about our disease. Based out of the U.K. and privately hosted on Yahoo! Groups (you can join, even today, simply by emailing the moderator), the Cauda Equina Syndrome Support Group (CESSG) has really been a blessing for me and countless others.

http://www.caudaequina.org

I have learned many CES Truths that aren't found in any of the scientific literature, and imagine this experience isn't exclusive or patently CES. With the advent of Facebook, Twitter, and other social media sites, however, there are wonderful support groups for patients, caregivers, friends, and families trying to understand, let alone cope with Cauda Equina Syndrome. In fact, even I created a page on Facebook with the sole intention of educating my friends and family, shamelessly titled, Stand With Aaron.

My background is in biology and chemistry, and though I am unable to work in the lab yet, my urge to contribute to society in a positive and meaningful way is even stronger living with Cauda Equina Syndrome. This website is intended to serve as a repository of scientific and medical information related to CES. Comments, questions, answers, and all feedback is encouraged. Though I want to present annotated curated research foremost, I welcome and link out to educational and social pages maintained by myself and others.

Together we will help each other learn, support each other unconditionally, strive for greater public awareness, and in time replace that blackhole of information with a giant digital CES fingerprint

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