Epidural Stim Pioneers: Recovery and Quality of Life
From Reeve Foundation's Progress In Research Winter 2014 (PDF)
Rob Summers was the first one. He had been run over by a car and had a C7-T1 spinal cord injury. He came to Louisville, KY with no motor function below his chest. Researchers there, led by Susan Harkema, Ph.D., implanted an epidural stimulator over his lumbar spinal cord. That, plus a lot of aggressive locomotor (treadmill) training, enabled him to stand on his own, take steps and after seven months, to the surprise of the research teams at the University of Louisville and UCLA, regain voluntary motor function when the stim was on. Even more surprising, Summers regained bladder control and near normal sexual function, even when the stim was off.
Lead scientist Reggie Edgerton, Ph.D., of UCLA: "We're seeing these results because we have figured out a way to get to this circuitry -- the spinal cord already knows what to do, it just needs to be reminded what to do. And it needs to be prepared, physiologically, by the epidural stimulation. That's our way of saying, 'OK cord circuitry, get ready for this information. This sensory information is going to come through and you'll know what to do with it.'"
Summers was what researchers call an "N of one," that is, a single case study. Would the same procedure work in others? The answer is an unqualified yes. Four young men have now gotten epidural stimulators and Locomotor Training. Here, in brief, are their results.
The pioneers of epidural stimulation: (left to right)
Andrew Meas, Dustin Shillcox, Kent Stephenson, Rob Summers
After seven months we found out that while the stimulator was on, I was able to voluntarily control my toes, ankles, knees and hips, on command. This was something that was completely unexpected.
There were other benefits, too. One day I realized I could sweat again, and to regulate my temperature, feel hot and cold. I could also feel light touch. I regained control of my bladder, bowel and sexual function and my circulation improved. I'm not 100 percent but the changes really impact my quality of life.
I'm happy to have been part of the experiment and be able to help the scientists streamline their techniques. After seven months I could take steps; Dustin, number four, could step in the first week. I joke with [lead researcher at the University of Louisville] Susie Harkema, "by the time you get to patient number 1000, they will be running out of the lab in five days."
If I were to address a person with a new injury I would say without a doubt, this will change the quality of your life. We are not quite there yet but cures, I think, are just around the corner if we continue the research efforts and experimental trials.
Kent Stephenson, Mt. Pleasant, TX
I went to Craig Hospital in Denver for my inpatient rehab and came home from there in August. I was home for a week, then went to Frazier Rehab in Louisville, KY to start locomotor therapy. I did the [Reeve Foundation] NeuroRecovery Network training and community fitness program for a year at Frazier before I became aware of the epidural stimulation research, which of course was being done right there. I went through the screening and was selected.
The first time they turned the stim on I felt a charge in my back. I was told to try pull my left leg back, something I had tried without success many times before. So I called it out loud, 'left leg up.' This time it worked! I felt a sort of charge go down my leg and then a tightness. My leg pulled back toward me. I was in shock; my mom was in the room and was in tears. Words can't describe the feeling that overcame me at that moment -- an overwhelming happiness. I had been told by doctors that because I was an ASIA A I would never be able to move voluntarily. The feeling is amazing. It really gives you back that part of yourself you feel you lost when you become injured.
When this all started, my injury was supposed to be a life-ending deal, really, that is how the doctors told it to me. But in fact, it has been an adventure. Being a part of the stim program has really changed my life and enables me to do all the things I used to do, like deer and duck hunting, going off-roading, running heavy machinery at work, everyday 9-5.
When I started this program I wasn't 100 percent sure I wanted to give up two years of my life to go through the training and everything. But it has totally been worth it. I got a fortune cookie recently after my injury. It said. "Everything's impossible until somebody does it." I still have that note in my wallet, and always recite it in my head when I'm trying new things in my wheelchair life and stim program stuff.
Andrew Maes. Louisville, KY
Well, I heard about the epidural stim program, I was right there at Frasier. I was a good candidate -- an incomplete quad, ASIA B. I had done aggressive rehab and played quad rugby. I was supposed to be number two but my rugby schedule got in the way. But once I was picked, they had me do 80 sessions of Locomotor Training, to make sure I had no motor function below the lesion level. I did not.
Once the stim was turned on, I could stand on my own. It was amazing. I forgot how tall I was. It was very emotional to be standing after sitting the chair for so long. Then, on command I was able to lift up my legs -- pretty easily, even without the stim. It was just incredible how that felt.
Yes, leg function is a spectacular feature of epidural stimulation but for me the most important benefit is in managing my autonomic dysreflexia [AD, a dangerous blood pressure problem for people with injuries above T6]. Before the stim I could sense when my bladder was full, but if I waited too long to empty it, I would get a pounding headache, a sign of AD, and a painful reminder that, untreated, this could lead to stroke. Now, I can hold my bladder longer and have no AD symptoms. Bowel function has improved a little bit. As far as sexual function goes, that has improved greatly -- everything is possible now, and there is no AD.
What I'd say to others including new injuries: Don't give up, have hope. Look what I can do. And know that I'm doing this for you. We're learning from the first patients and this technique will get even better and better. Can you imaging what the 10th person will get back?
The feeling I get when I turn the stim on is amazing; when I stand or work on walking I feel great because I'm doing things that I was told would never happen again. The ability to move my legs is awesome and it makes me excited for the future because the four of us in the epidural stim program all keep making progress. I have also had progress in improved bowel, bladder, and sexual function -- this alone has given me a strong self-confidence. The stimulator makes me feel normal. It's like I'm back. It's been such a great opportunity for me to be a part of this research. If I talk with someone who has a new spinal cord injury I'd tell him or her about how exciting the research is and how important it is to stay healthy and keep involved with therapy. I tell people -- and show them by my example -- that scientists are making great improvements for people with a spinal cord injury.