Sara Lewis
Prior to the birth of my son December 31 2008, I was a healthy 27-year-old registered nurse with no history of chronic pain, back problems, neurological conditions, or any medical issues. I was working two full-time nursing positions and living an active life. I never imagined that the delivery of my first and only child would permanently alter the course of my health and future.
During placement of spinal anesthesia for an emergency cesarean section, eight attempts were required before successful access was obtained. Initially, I believed the severe pain I experienced afterward was simply part of recovering from childbirth and surgery. However, within weeks, I developed severe lumbosacral pain, debilitating burning pain throughout my pelvic region, and new-onset neurogenic bowel dysfunction—symptoms that would ultimately change every aspect of my life.
Over the next decade, I traveled throughout the United States seeking answers, consulting specialists and major medical centers. Despite my background as a registered nurse and my ability to
advocate for myself, obtaining a diagnosis proved extraordinarily difficult. It was ultimately through the experience and insight of a neurosurgeon familiar with the radiographic findings of Adhesive Arachnoiditis in 2019 that I finally received the diagnosis that explained years of suffering.
My hope in sharing my story is to raise awareness of Adhesive Arachnoiditis and to bring attention to the many patients—particularly mothers following childbirth-related neuraxial procedures—who spend years or even decades searching for answers. In my opinion, Adhesive Arachnoiditis is likely far more common than currently recognized, and many patients continue to be overlooked, dismissed, or misdiagnosed.
Connect With Sara and Arachnoiditis Unfiltered
Sara and Steve continue to create community and conversation through Arachnoiditis Unfiltered, a space devoted to patient education, awareness, support, and meaningful dialogue around Arachnoiditis. Steve Lovelace, Sara's co-founder and partner in this work, shares his own Adhesive Arachnoiditis story in our Faces of Arachnoiditis series — together, the two of them bring both lived experience and a steady advocacy voice to the AA community.
Watch the Arachnoiditis Unfiltered Podcast on YouTube: https://www.youtube.com/@ArachnoiditisUnfiltered
Join the Arachnoiditis Unfiltered Facebook Group: https://www.facebook.com/share/g/1FC7GaABqK/
Sara is also joining ACMCRN as the host of a new online open discussion peer-support meeting beginning Thursday, July 9, 2026, at 10:00 a.m. EDT, and continuing every other week.
Meeting details and the Google Meet link will be posted in our Events & Peer Support section on Thursday, July 2nd. Visit the page and bookmark it using the button below.