https://vimeo.com/user120869100/download/847479573/08584c9bae Thank you to all of John's supporters during the past few years. He has experienced great challenges during his recovery and the family is forever grateful to everyone that has helped him during this time. I would like to share an important update on his continued recovery through his story below. John will be traveling to Colorado for an upcoming surgery in the next few weeks. Unfortunately, he will be responsible for a portion of his medical expenses being that his surgeon is out of network with his insurance. John will also need air travel to Colorado and accommodations prior to and after surgery. Doing this will require a significant amount of funds that would greatly impact his family of 5. We are asking for your support to help get him the treatment that he needs. Please take the time to read his story below and consider contributing to his future care. Progressive posttraumatic myelomalacic myelopathy (PPMM). In 2019 my brother n-law, John, former strength and conditioning coach at Ohio State, was at his prime operating a successful personal training business, FIT Plus+ in Dublin, Ohio. On May 11, 2019, he and his three beautiful children and wife went for a bike ride at a local park. While riding over a ramp a fall resulted in severe spinal cord injury of the cervical spine resulting in incomplete tetraplegia. Following a life saving surgery, healing and rehab John rallied through. Within his first year of recovery, he was able to drive, walk without assistance and return to work supervising personal training. Being strong and health conscious, John was determined to return to as much function as possible. In 2024, John began developing worsening spasticity involving his torso area. He described it as a “boa constrictor sensation” along his midsection. Over time this girdle band sensation became so severe it began to impair his mobility. John’s condition progressively worsened and in November 2024 he was at the point where he was unable to get out of bed, dress or feed himself. His spasticity and neuropathic pain also worsened affecting his bowel and bladder control. In September 2024, John was re-hospitalized for further work-up and all testing was ultimately “unremarkable”. Of note, the MRI report read “an ovoid focus of increased T2 signal intensity at C3-4 and a subtle linear focus of increased T2 signal intensity at C7-T11”. John was sent for further rehab. Without answers to his decline, John consulted with Cleveland Clinic’s physical medicine and neurology team, Dr. Neumanaitis and Dr. Bethoux, who again found his imaging unremarkable and recommended an evaluation for a baclofen pump placement. This ultimately led John to Ohio State University neurologist, Dr. Schwab. After a review of John’s case, he attributed the decline in functioning to aberrant nerve regeneration and recommended further rehab along with a baclofen pump placement in hopes of improving his spasciticity. He underwent baclofen pump placement in February 2024. It was a slow process of titration in hopes of providing some sort of relief. Unfortunately, as the year progressed, and the medication was slowly increased he noticed no relief in his symptoms. Instead, he developed worsening weakness, pain, and spasticity, especially when being upright. In April 2024 John's decline prompted another hospitalization. Looking for answers, I contacted a former neurosurgeon that I previously worked for, Dr. Frank Vrionis, Director of Neurosurgery in Boca Raton. Dr. Vrionis brought forward the possibility of a “tethered cord” and suggested a CT myelogram given the inability to completely assess the spinal cord with MRI due to hardware artifact. What is a tethered cord? After a spinal cord injury, scarring can occur along the spinal cord. This restricts the normal movement of the cord and flow of spinal fluid resulting in further breakdown of nerve cells and possibly leading to the formation of a cyst (Craig Hospital, 2015). John underwent a wide array of testing including labs, MRI, and CT. We urged the team to order a CT myelogram but after reviewing John’s imaging they all determined that there was no evidence of tethering seen and deemed the test unnecessary. The team felt that all test results were unremarkable and simply sequela of his spinal cord injury, “residual affect from his initial injury.” Of note, the MRI again showed an “ovoid focus of T2 hyperintensity at C3-4 ‘likely representing myelomalacia’ and T2 signal intensity of the upper thoracic spine possibly related to ‘Wallerian degeneration’”. Myelomalacia is softening of the spinal cord. Wallerian degeneration is “the formation of astrocytic scar and myelin reduction” (Stenimahitis, 2024). Seeking more answers, I began researching these terms, including again the possibility of tethering. That is when I came across the term, progressive posttraumatic myelomalacic myelopathy (PPMM), another name for tethered cord. I began reading various publications and research studies. I discovered that 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. Could this be John’s problem? He definitely fit these symptoms. Could this be fixed? Surgical technique involves meticulous dissections of adhesions on the spinal cord. 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 my reading, I noted a few common names with PPMM research, of note Dr. Barth Green, professor of neurosurgery at the University of Miami Miller School of Medicine and Director of Applied Research with The Miami Project to Cure Paralysis. I was able to email Dr. Green and thankfully he responded promptly and was eager to help. I sent all images and records to Dr. Green for review. With this, he involved several of his colleagues looking for answers to help John. Through my readings, I also came across author and neurosurgeon Dr. Scott Falci in Englewood, Colorado. Dr. Falci trained with Dr. Barth Green and has dedicated his work to improving spinal cord injury complications. I was able to connect with Dr. Falci’s nurse practitioner on LinkedIn and I sent her John’s story. Her response was a breath of fresh air! Ann stated that John’s symptoms were classic for spinal cord tethering, including the banding thoracic pain, a classic symptom of spinal cord tethering or scar tissue adhesions. She felt that the Wallerian degeneration was likely secondary to what was happening in the spinal cord and recommended further evaluation by Dr. Falci for surgical consideration. Through research, Dr. Falci reports that nearly all spinal cord injury people have some degree of tethered cord and only 10-15% develop symptoms significant enough to warrant surgery (Craig Hospital, 2015). So why did no other medical professional point to this possibility? Most neurosurgeons depend on the MRI to detect this condition. Dr. Wise Young, founding director of W.M. Keck Center for Collaborative Neuroscience, distinguished professor, and doctor that first treated Christopher Reeve after his injury blames this lack of widespread knowledge due to early theories that dominated neurosurgery from the assumptions that syringomyelic cysts are pressure induced. Later research demonstrated that cysts resulted not only from pressure but obstructed flow of spinal fluid due to adhesions, yielding the importance of removing the adhesions (detethering) to improve the flow (Gilmer, 2019). After consultation with Dr. Barth Green and his colleagues, it was interpreted that the area at T2-3 was suspicious for spinal fluid flow voids. The area at C3-4 was also noted to have changed over time. Is it all in the eye of the beholder? I also made contact with Swedish neurologist Dr. Vasilios Stenimahitis who has written several publications on spinal cord injury complications. After sharing John’s story he agreed that his decline could be related to posttraumatic myelopathy with Wallerian degeneration and agreed to consultation with Dr. Falci. His research showed that surgical treatment of posttraumatic tethered cord resulted in significant improvement in neurological function and halted further neurological deterioration in the vast majority of patients (Stenimahitis, et al., 2024). I would consider Dr. Falci an absolute expert in cord detethering as he has performed nearly 1800 untethering surgeries. John recently underwent a virtual consultation with Dr. Falci and thankfully John finally has answers for the reason for his decline. He confirmed that indeed John had evidence of cord tethering and would be a candidate for surgery. He is scheduled for surgery in the near future. I am a nurse practitioner and am baffled by the struggle we went through with John to finally find a reason for his decline. There is indeed a lack of awareness and advocacy needed to help others that could potentially be affected by this condition. 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. Lee, T., Arias, J., Andrus, H., Quencer, R., Falcone, S., Green, B. (1997). Progressive posttraumatic myelomalacic myelopathy: treatment with untethering and expansive duraplasty. J Neurosurg Spine. 86 (4): 624-628. Craig Hospital. (2015, March). Tethered Spinal Cord & Syringomyelia. https://craighospital.org/wp-content Stenimahitis, V., Fletcher-Sandersjoo, A., Tatter, C., Elmi-Terander, A., & Edstrom, E. (2024). Long-term outcome following surgical treatment of posttraumatic tethered cord syndrome: a retrospective population-based cohort study. Spinal Cord. 60(6): 516-521. Gilmer, T. (2019, October). Dr. Wise Young on syringomyelia and untethering surgery. New Mobility. https://newmobility.com/dr-wise-young-on-syringomyelia-and-untethering-surgery/
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