Forging New Paths While Recovering from a Spinal Cord Injury
By Desiree Battaglia, Media Relations Specialist, firstname.lastname@example.orgRehabilitation August 26, 2020
The fall resulted in a traumatic spinal cord injury with incomplete tetraplegia, meaning de Coning had very little movement in both arms and legs. What followed his fall was a seven-hour surgery and months of physical rehabilitation.
Thanks to a collaboration between teams at Northwestern Memorial Hospital and Marianjoy Rehabilitation Hospital, de Coning is now walking again and doing a number of activities he’s always enjoyed, such as cooking and photography. While his recovery from the injury is still ongoing, the one thing that’s never faltered is his determination to keep pushing forward.
“I can’t believe where I’ve been and where I am now,” de Coning said. “Even now, it’s not always easy, some days it’s really terrible. But I look at it and think, you could be on a ventilator. You could be dead. And you’re not, so, carry on.”
It was a Sunday afternoon, and de Coning recalls watching television after cooking pork chops and mashed sweet potatoes for lunch. The next thing he remembers is lying on his back, unable to move. He heard his wife screaming and felt his dog licking his face.
A critical spine surgery
De Coning was taken to a local hospital and after an initial assessment, he was transferred to Northwestern Memorial Hospital in Chicago where Aruna Ganju, MD, spine surgeon, reviewed his case.
Although de Coning had significant weakness in his arms and legs, upon examination Dr. Ganju found he could wiggle his toes and feel touch on his limbs. This led to a diagnosis of incomplete tetraplegia.
“Tetraplegia means no motor or sensory function in any of the four limbs,” Dr. Ganju said. “An incomplete injury means there is some function of the spinal cord distal to where the injury is.”
Additionally, the fall produced an epidural hematoma, which is a pooling of blood, around de Coning’s spinal cord. Dr. Ganju and team performed a cervical laminectomy to make room for the spinal cord and remove the hematoma. They also had to realign two of the vertebrae in his neck.
“There are seven vertebrae in the neck,” Dr. Ganju explained. “C1 through C7. Neels fractured his C2 vertebra and suffered a very specific type of fracture; what we call a hangman’s fracture. In addition, his C2 and C3 were misaligned.”
It was important for the surgical team to act quickly, because the neck region of the spinal column contains the cervical spinal cord – and is essentially the control panel for the rest of the body.
“All [spinal cord] injuries are serious, and all are treated with the same amount of expeditious attitude,” Dr. Ganju said. “The cervical spinal cord is expensive real estate because it controls everything.”
The main goal of the surgery was to prevent further injury and preserve what function de Coning had left so that he could work through rehabilitation and regain mobility. Following the surgery, de Coning spent 10 days in the intensive care unit at Northwestern Memorial Hospital. He did not know if he would be able to move or speak again.
“My existence was staring at the ceiling, eight tiles that way, three tiles down, and an air conditioning vent,” he recalled. “Someone would speak to me and I didn’t know where they were. I thought, ‘I’m going to be one of those people just living inside their head. People won’t know if I’m happy, sad, crying.’ And I wanted to die. I felt if that’s the case, I’d rather die.”
An emotional, physical and spiritual journey
Once de Coning was stable enough, he was transferred to Marianjoy Rehabilitation Hospital, a part of Northwestern Medicine. It was there that he found a way out of the despair he had been feeling. He had a tracheostomy tube that made it possible to finally speak to his wife, Rene.
“I didn’t know if I was alive, if I was going to recover,” he said. “I asked, ‘Am I in hospice?’ Rene said, ‘No, you’re not in hospice.’ I said, ‘OK, then I want to live.’ That moment is where I made a decision to start this journey.”
De Coning’s will to live kept him going, but there were still many difficult days throughout the journey.
“I said, ‘I want to live’, but at the same time I had no idea what that meant,” he said. “At first I could only move my one hand and my foot. Then a week later, they actually got me to stand, and I just started crying because I never thought that was possible.”
The recovery plan for de Coning went beyond physical rehabilitation. His care team also included occupational therapy, speech therapy, rehabilitation nursing, neuropsychology, spiritual care, and case management to fully address all of the changes facing him after the injury.
“We have the privilege as a rehab hospital to serve these amazing and courageous individuals who have to learn to embrace life in a different direction after a spinal cord injury,” said Anita Kou, MD, physiatrist and medical director of spinal cord injury at Marianjoy. “As much as or our patients credit us with helping them recover, we are always truly inspired by every patient’s story and recovery and how they find their own purpose in life again.”
Both de Coning and Dr. Kou credit his strong support system for having a major impact on his recovery. His wife and their two sons, friends and church community added to the encouragement he received from the hospital staff.
“I was surrounded by the most amazing people I’ve ever come across in my life at Marianjoy,” de Coning said. “They are the ones that make the difference. That’s what Marianjoy did for me, they kept the hope alive. If the hope is alive, you will survive.”
During his three-month stay at Marianjoy, de Coning documented his progress through a video diary. When de Coning watches the video today, it brings back a rush of emotions. He says the video is still painful to watch, but he doesn’t want to forget the feelings associated with it.
“If I lose touch with that, then I cannot help somebody else,” he explained. “I’ve got to remember what it felt like for me being there, because then I can say to somebody, ‘It’s going to get better.’”
To this day, de Coning and his physicians don’t know why he fell. He does not dwell on what happened, or why. When asked what he would say to someone in a similar situation, he paused for a minute.
“It sucks,” he said, flatly and honestly. “There’s no way to sugarcoat it. You’re scared, you’re terrified. The uncertainty is there, and it’s horrible. You can dwell on that, or you can choose to find hope for yourself.”
The road ahead
De Coning continues outpatient therapy at Marianjoy once a week with occupational and physical therapy sessions. He keeps working on ways to improve his strength, balance and overall mobility. It is unknown at this point when de Coning’s progress will stop.
“Neels’ story is so special because he surprised us and really improved incredibly within the first couple of months,” said Dr. Kou. “We can hope to see more improvement up to 12 months or beyond a year of his initial injury.”
Both Dr. Kou and Dr. Ganju believe de Coning’s positive attitude and perseverance will continue to play an important part of his recovery.
“He had what potentially could have been a devastating and life-altering injury,” Dr. Ganju said. “Neels felt that this experience really put him on a new pathway. You see how he was able to gracefully meet this challenge, and you can’t help but be inspired.”
De Coning hopes to use his story to inspire others facing challenges in their life, be it a spinal cord injury or something else.
“My path and your path aren’t the same,” he said. “Whatever it is, this is going to pass. Push it one day at a time and don’t despair; it will take as long as it takes.”