ROCHESTER, Minn. — When Chris Barr came out of anesthesia after emergency surgery to stabilize and decompress his spinal injury, his wife, Deb, remembers him looking to her and mouthing the words "pull the plug."
It had been a small miracle all its own that Barr, 53, was even alive. He had been surfing in 2017 outside of San Francisco, when a wave threw him head first into shallow water, causing an injury to his cervical spine that left him unable to feel anything below his neck.
He was floating unconscious in the water. It was only a chance bit of luck that a friend on shore saw him, ran out and pulled him to safety.
"He had lost full control of upper extremities, lower extremities as well as bowel and bladder initially," says his doctor, Mayo spine surgeon Dr. Mohamad Bydon. "There was even trouble with his breathing ... such that he had a breathing tube at first. He did go on to improve somewhat on his own. But eventually that improvement plateaued."
The rest of the story of Barr, otherwise known as Patient One from Phase 1 of CELLTOP, a FDA-registered clinical trial of stem cells in the treatment of traumatic spinal cord injury, is now familiar, having been announced and widely reported last fall and published this week in the print version of the journal Mayo Clinic Proceedings.
Eleven months after his injury, two years ago last fall, Bydon and colleagues harvested stem cells from Barr's abdominal fat, expanded them in a lab setting, then injected them into his lower spinal cord. The cells migrated to the area of high inflammation near the site of his injury. The belief is that they reduced a secondary injury that impairs function beyond the initial spinal cord injury.
"What happens in so many cases is there is a secondary injury that occurs," says Bydon, "and you take what could be a small area of contusion to the spinal cord, and you expand it significantly."
"We believe there is a potentially vascular response that produces a secondary injury after the initial spinal cord injury. We believe the stem cells may induce a vascular response that reduces scar tissue and secondary injury that develops." It remains possible still that stem cells could address the primary injury, the lab work has not established the extent of that possibility.
"If we can step in and reduce the secondary injury," Bydon says, "that would be a big victory, because systematically we currently let the secondary injury occur on a regular basis."
Barr say he noticed a difference immediately. Objectively, he improved on a host of measures of movement and bodily control, from extending the distance and speed that he could walk to his sensitivity to touch and pin prick to his hand control and grip strength. Today, Barr's use of a wheelchair "depends on whether he's going long distances or short distances, " says Bydon.
Since last fall, something of a media feeding frenzy has ensued around the story, with thousands of medical records coming in to Mayo Clinic from spinal cord injury patients, and a report on ABC News by Will Reeve, son of the late actor and spinal cord injury advocate Christopher Reeve.
The trial can only look at patients within one year of a traumatic spinal injury, and an injury not caused by gunshot wounds.. Save for travel and lodging, all costs are covered for participation by foundation grants and government support from the state of Minnesota in partnership with the University of Minnesota.
Moreover, there are nine more patients still being studied. Bydon says that Barr is a super responder, as determined by the rate at which his function saw a high level of early positive changes compared to others in the trial. The report due next will highlight that the typical outcome is a mix of outcomes.
"In our cohort we have super responders, moderate responders, and nonresponders.," he says. "So our next goal is Phase 2 research, and we're going to start that this year. One of the questions we'd like to answer in Phase 2 is who will benefit, and why, and how much benefit do they gain?"
"Maybe we can't get them back to full recovery," Bydon says, "but can we get them as close as possible."
Bydon's team could release the results from the rest either in staggered blocks or as a large group when the last patient has been followed for two years, which is in one year's time.
"We re going to tell the story of the full 10 patients," Bydon says. "And that is a story I am looking forward to tell."