My inspiration for forming Stronger Than Yesterday Advocacy LLC stems from a personal level. In 2019, my brother-n-law, owner and personal trainer of FitPlus+ Dublin went for a bike ride with his wife and 3 children. This bike ride was a unfortunately a life altering experience. John was involved in a bicycle accident resulting in an ASIA B spinal cord injury at the level of C4 leading to incomplete tetraplegia. Following surgery, healing and rehab John rallied through recovery. Being strong and health conscious, John was determined to return as much function as possible. Within his first year he made constant improvements in his level of functioning to the point where he was able to drive, walk without assistance and return to work supervising personal training. Approximately one year after his injury he began noticing progressive loss of functioning, worsening spasticity and pain. Multiple hospitalizations, MRI’s and medical consultations brought no obvious reason for his decline. John was basically told his decline was related to the damage done and he was offered pain management. Without answers, I consulted with a former neurosurgeon that I previously worked under as a nurse practitioner. He questioned the possibility of cord tethering and adhesions. Unable to convince John’s medical team of this possibility, I began searching through various studies and publications and came across the term, progressive posttraumatic myelomalacic myelopathy (PPMM), another name for tethered cord. I learned the symptoms may include worsening pain exacerbated by activity, progressive decrease in motor function and sensory loss, disruptions to bowel and bladder management, worsening spasticity and impaired cardiovascular function or orthostatic hypotension (Craig Hospital, 2015). These symptoms can occur months or years after a spinal cord injury and is the result of scar tissue formation leading to the loss of movement and elasticity of the spinal cord and/or obstruction of CSF flow. Studies determining the long-term outcome of treatment were impressive. After surgery, 90% of patients stopped the progressive loss of function. Over 50% showed improvement in their overall symptoms. 60% showed improvement in spasticity. 50% showed improvement in pain. 17% showed motor improvement and 18% showed improved sensory function (Falci et al., 2009). Through extensive hoops I was finally able to connect John with a surgeon who determined that tethering was indeed the root of John's declining function. John eventually underwent cord de-tethering surgery resulting in some improvement of his symptoms and but most importantly ceasing the continued progressive decline in functioning that he was experiencing. Through my research I came to this conclusion that the care of chronic spinal cord injury patients was a subspecialty that many neurosurgeons infrequently deal with. There is a need for awareness. There is a need for patient advocacy. There is a need to help patients navigate our complex healthcare system to find solutions to their decline in function. Spinal cord injuries are not progressive demyelinating diseases. It is not cancer. If there is decline in functioning, there is a reason. There is a solution. I will dedicate myself to helping chronic spinal cord injury patients get the answers they need to improve their quality of life.

Falci, S., Indeck, C., & Lammertse, D. (2009). Posttraumatic spinal cord tethering and syringomyelia: surgical treatment and long-term outcome, J Neurosurg Spine, 11(4), 445-60.

Craig Hospital. (2015, March). Tethered Spinal Cord & Syringomyelia. https://craighospital.org/wp-content

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