One person really can make a difference. When I asked Dr. Steven Hinderer what got him interested in establishing a collaborative international program for SCI recovery at the Rehabilitation Institute of Michigan, he said, “It was really a specific patient and her family. She was injured, went through a traditional rehab program and was being told frequently and emphatically that she was not expected to recover and that she should get on with her life. That was not a message that she was prepared to hear at that point.”
Shades of Christopher Reeve? Maybe, but Erica Nader seems self-motivated. “I’ve pretty much been doing some kind of intensive exercise recovery-based program since the beginning of my
“Erica and her family really did their homework,” says Hinderer. “They had researched and gone online and looked at statistics of recovery. Her father came in, sat down with me before I even saw Erica and said, ‘Look, this is where we are, this is where we want to go. It’s fine if you’re not comfortable with that, but we need a physician who’s going to support us with this and help us pursue it. You’re either on board or you’re not. What do you say?'”
Hinderer was impressed with the Naders and confident in the science behind Lima’s procedure–his associate, Dr. Jean Pedruzzi, had 10 years experience in SCI recovery research and had worked with Lima. Plus, Erica was just one of many who might benefit. “I’m on board,” he told Erica’s father. That was in January 2002. Between them, Hinderer and Nader’s father made a total of five trips to Lisbon–“to pave the way so we knew things would go reasonably well when people went over there,” says Hinderer. “Getting involved with Dr. Lima was a direct outcome of Erica’s situation and pursuing those technologies.”
RIM screens OEC implantation candidates, sends them to Lima (whose team has made final choices), then enfolds them in a supportive program at Detroit based on the recent scientific model indicating that restoration of function following just about any recovery procedure is maximized by intensive exercise-based therapy. “There is pretty much uniform agreement among all people doing work in this area that it [intensive therapy] is absolutely essential,” says Hinderer.
In late March 2003 Erica Nader became the first American to undergo Lima’s OEC implantation. After two years of therapy, she is showing signs of at least partial recovery. Sensory restoration is evident down to about the T10 level, according to Hinderer, and partial motor restoration has resulted in greatly strengthened abdominal muscles and the ability to stand with braces and a walker. Her arms and hands have also been strengthened, with some return of grasping ability.
Here’s the procedure: A lamonectomy exposes the spinal cord and scar tissue is removed (untethering) outside the dura (the covering outside the cord). The surgeon opens the dura and works intradurally to free up normal flow of cerebrospinal fluid, which is often decreased or absent due to scarring and adhesions. A small opening is made in an existing cyst (hollowed out area caused by loss of tissue in the middle of the cord) and OEC cells are implanted. One surgeon does the untethering, prepares the cyst for implantation and packs off the area. Then another surgeon, an otalaryngologist, uses a fiberoptic scope to navigate the sinuses and harvest olfactory tissue, which is cleaned and cut up in small pieces, soaked in cerebrospinal fluid, and implanted, all during one anesthesia.
Then comes the hard part: Three hours per day of intensive therapy, at least three days each week, for two or three years, if not more. As of April, eight candidates have undergone the procedure and returned to RIM for therapy. Another 10 are being processed as candidates. A total of 43 people from different countries have had the procedure done in Lisbon. To date, Lima has only operated on those whose injuries are complete and less than 10 years old, and whose age is less than 40. The production of olfactory mucosa decreases with age.
The Portugal-Detroit connection is not the only option available at RIM. Another four recovery candidates have been sent to Dr. Huang in Beijing, China, for implantation of OEC cells taken from fetal bulbs. Huang has done his procedure on more than 400 people with little restriction on age of injury. Results are similar to Lima’s. However, Hinderer says that RIM has a more distant approach to Huang’s procedure. Besides the ethical concern about using fetal cells, Hinderer is concerned about the uncertainty of the quality of the cells. “We don’t know if the cells harvested from the fetuses are tested for HIV. We don’t know if they’re tested for genetic diseases. And while these are not cells that can transmit a disease or their DNA to the recipient, the way these cells work is by producing growth factors and chemicals that facilitate change. And if a genetic coding in the cell is abnormal, they may not function properly.”
Hinderer’s inquiries about quality of cells and testing have gone unanswered. He doesn’t know if this is a government censoring issue or a closely guarded secret, but he says even Dr. Wise Young, the prominent SCI researcher from Rutgers–under whom Huang worked for two years–has been unable to get answers.
Hinderer believes the best–and safest–recovery procedure currently available is Lima’s OEC implantation procedure in combination with RIM’s intensive follow-up therapy. He is planning to apply to the FDA for clinical trials at RIM. Look for trials to begin within 12 to 18 months. And keep a close eye on Erica Nader. Her recovery–partial for now–is still in process.
Erica Nader, C6, OEC Implantation Pioneer
Since my surgery, it’s been a slow and gradual process. But things keep on changing, which is something that’s not supposed to happen. There were some somewhat immediate changes I think just due to the untethering that’s done during the surgery. Within six months I noticed a little bit more muscle movement, a lot more strength, and some increases in sensation.
I don’t think I actually gained a lot of motor recovery until the last year or so–my upper abdominals, lower back muscles and some of the muscles that connect to my hips. I have a lot more muscle spasticity throughout my whole body. I can stand with leg braces and not fall over–I couldn’t do that before–just because of the amount of trunk control I now have. I have more hand and finger movement now than before. I also have more tone everywhere. So that helps me a little bit with my hand grasp of certain things.
I was in a power chair for the first nine months after my injury. Now I use a TiLite titanium rigid frame chair. If there’s something that’s really steep up or down I still need assistance, but for the most part I can maneuver just fine.
Psychologically, one thing that has helped recently has been the support of Dr. Hinderer. I think the recent cropping up of all these exercise-based recovery programs that are reaching out to people and bringing the message of recovery rather than rehabilitation is really important, and that’s helped me a lot. The ongoing improvement certainly helps keep me going.
I usually do three hours of therapy, some kind of organized workout with a physical therapist or an athletic trainer. That involves anything from water therapy to kneeling and working on crawling and hands-and-knees positions, push-ups, sit-ups, standing with leg braces, sitting and balancing on a large exercise ball. I do some Pilates work (like yoga, Pilates focuses on muscle coordination and fine motor tuning). I do occasional gait training, but it’s not a huge part of my routine. In water it’s more helpful because of the balance and support.
It’s all equally important and best to be flexible and creative because you are always changing. It’s good to be open to changing what you do every three to six months–that’s how you make progress. But it can be difficult to find physical therapists and trainers to work with who think that way, creatively.
Before you decide to do a procedure, be cautious and really do your research, make sound decisions, have a doctor and a physical therapist for support. And be prepared mentally. It’s such a big change. The biggest barrier to recovery is the mindset, the commitment that it will take. It’s a lifestyle, like with any athlete, a way of life. It’s also a great opportunity–it’s within your control, it’s what you can do.
For more information, contact the Center for Spinal Cord Injury Recovery at the Rehabilitation Institute of Michigan: 866/SCI-CENTER; or visit www.centerforscirecovery.org.