NRN Spotlight: Frazier Rehab Institute

Posted by Reeve Staff in Daily Dose on June 06, 2016 # NeuroRecovery Network

For individuals living with spinal cord injuries and their families, the Frazier Rehab Institute is a source of progress and hope. Julia Carstanjen, a 45-year-old mother of three from Prospect, KY, calls it a miracle.

“After my spinal cord surgery, the doctor said that I might never walk again. I was paralyzed from my knees below. I had a vertebra in my back that nicked my spinal cord,” said Carstanjen, who was transferred to Frazier Rehab Institute, the lead center in the Christopher & Dana Reeve Foundation's NeuroRecovery Network® located in Louisville, KY. “I'm tremendously grateful every day to have the opportunity to be in one of the best places in the world for my recovery.”

Offering hope

Like many participants, Carstanjen arrived at Frazier Rehab with great optimism.

“At first, even just moving my leg an inch, I was elated and my mindset was never to give up,” said Carstanjen. “Slowly, everything that seemed impossible became possible. I went from the wheelchair to the walker, to two canes, to one cane, to walking without a cane.”

Carstanjen worked hard—mentally and physically—but she is also quick to credit the drive and dedication of the Frazier Rehab staff for her success.

“The therapists and the doctors are convinced that there is hope, there is a recovery that can take place, and that convinces the participant who wants to hope and try,” said Carstanjen. “One time I said ‘I can’t’ and the whole room went silent. I said, ‘Oh, I guess I can’t say I can’t.’ I've seen amazing recovery and there’s an absolute conviction that people will get better.”

That conviction is based in science.

Proven results

“Progress can be slow so we make a point to document and celebrate the small milestones,” said Miranda Garvin, PT, DPT, Clinical Supervisor of Frazier’s Spinal Cord Medicine Program. “It’s important to demonstrate that recovery can happen. Over the years, data from more than 600 NRN participants has allowed us to show our success stories across the NeuroRecovery Network.”

Frazier Rehab Institute is part of the Neuroscience Collaborative Center, a collaborative partnership with the Kentucky Spinal Cord Injury Research Center and the Department of Neurological Surgery at the University of Louisville. Much of the center’s NRN research has been published in the Archives of Physical Medicine and Rehabilitation.

“This research gives us enough evidence to show that locomotor training supports recovery from spinal cord injury,” said Garvin.

In addition to helping standardize and improve treatments, the research helps insurance companies understand the importance of extended coverage.

“When a participant first comes to us, progress is typically slow. NRN participants require 90 minutes of therapy, 5 days a week,” said Garvin. “Exponential change may not happen within the first three months. Getting insurance companies to pay can be difficult.”

Garvin recalled one participant who was beginning to show significant progress just as the 60 sessions of therapy her insurance allowed were used up.

“I reached out to the insurance company with her story, where we were and where we could go,” said Garvin. “She is not a piece of paper, she is a real person and this is about her ability to walk. She needed someone to advocate for her.”

As the insurance company saw the participant’s progress, it continued to cover the therapy.

“By giving her those additional sessions, she is now able to walk. It changed her life,” said Garvin. “If insurance only approved the initial sessions, she would still be in a wheelchair without a doubt. This is expensive care, but it gets people back on their feet.”

Advancing new therapies

“One of our biggest advances in recent years is the intensity and frequency with which we see participants,” said Garvin. “We are also beginning to look into the use of electrical stimulation as a major aspect of the program in addition to the locomotor training.”

Carstanjen started electrical stimulation several months ago.

“I lived with a level of pain rated at six-to-eight on a scale of one-to-ten,” said Carstanjen, who participates in electrical stimulation for one hour, twice a week. “Electrical stimulation is like 100 therapists on your feet all at the same time, so it allows my muscles to relax and to learn. The nerve pain in my feet has been reduced about 50 percent.”

Both Carstanjen and Garvin also note the tremendous emotional and social benefits to the NRN program.

“Many participants don’t have many opportunities to get out and about in the community so being part of the NRN, they are able to interact with and support each other,” said Garvin. “Some days it feels like I see the participants more than my family, and the participants become like a family.”

Carstanjen agrees. She would absolutely recommend Frazier Rehab to anyone who needs therapy and she continues to focus on hope for the future.

“It has been a miracle to me,” said Carstanjen. “I’m walking much better. I cry because I’m beginning to feel like my legs felt pre-injury. I envision myself one day being able to jog and to return to sports and other activities I used to do. It’s amazing.”