Tuesday, May 10, 2005

Small Steps Toward Goal: Gain Through Pain

Walking and standing after surgery brings independence

BY PATRICIA ANSTETT - FREE PRESS MEDICAL WRITER

With the help of three therapists and new high-tech leg braces developed in Michigan, Cortney Hoffman took her first steps last week since her spinal cord injury in a 2002 auto accident.

Cortney, 18, of Temperance, north of Toledo, is building her upper-body strength and muscle tone and can move herself from her wheelchair to her bed.

Her dream is to walk again, but she appreciates every gain short of that. Like so many others with spinal cord injuries, the independence she is regaining is at least as, if not more, important than walking.

Cortney has surpassed her first goal -- standing unassisted -- since she went to Portugal in January for adult stem-cell surgery to repair her injured spinal cord. The success of the experimental surgery, which has attracted interest worldwide, is dependent on at least two years of aggressive physical therapy.

There remain plenty of questions and skepticism, among both patients and experts in the field, including: Is the aggressive therapy or the surgery responsible for patient gains? How long do benefits last? Have patients been hurt by the surgery?

There are other issues. There still are no published studies. The surgery costs $47,500 for the operation, hospital expenses and trip to Portugal, and many insurance plans do not cover it. Cortney's no-fault auto insurance did.

Yet, with an estimated 247,000 Americans living with spinal cord injuries at a cost to the United States of $9.73 billion a year according to a recent report from the Institute of Medicine, interest is keen, both in the spinal cord community and the media.

Tonight, "CBS Evening News" is scheduled to show a report on Cortney at 7 p.m. Cortney tells those who ask about the operation and grueling therapy, "It's worth it." And her doctors, too, are pleased with her progress.

Making progress

Dr. Owen Perlman, a Superior Township rehabilitation medicine specialist and Cortney's primary physician, concluded on Cortney's last appointment April 21 that she has made gains he would not have expected if she had not had the surgery. He hadn't seen those gains in the aggressive rehabilitation she underwent for several months before the surgery.

Perlman called her progress "very slow" at the April appointment but praised her gains.

"She is working very hard. We have eight doctors in this practice, and we all feel pretty good about the surgery," he said.

"Time will tell. Based on my understanding of the surgery and how people are recovering, there's potential for greater progress in the months ahead; the proof will be at six, 12, 18 and 24 months after surgery," Perlman said.

Perlman is not associated with the spinal cord team at Detroit's Rehabilitation Institute of Michigan, which has a formal relationship with Lisbon's Hospital de Egas Moniz to screen patients for the operation and provide the rehabilitation needed afterward.

Fifty-two people, mostly Americans, have had the operation since the Lisbon hospital began performing the procedure in July 2001, according to e-mail correspondence last week with Dr. Carlos Lima, the neuropathologist and spokesman for the team.

Both Lima and Dr. Steven Hinderer, specialist-in-chief for physical medicine and rehabilitation at the institute, hope to publish research this year.

Though no surgery patient has yet achieved walking with ease, one is walking unassisted without braces; some can swing their legs; and a few have regained some bladder control, according to Lima. The rest all are showing gains in function, sensation and strength. There have been no deaths or permanent loss of function, he said. Two had temporary loss of sensation in one limb and two developed a type of meningitis infection, but they have recovered, he said.

Nearly all patients temporarily lose their sense of smell and taste. Cortney lost both, though each returned in three months.

Interest in surgery growing

The Lisbon team calls the operation an autologous spinal cord autograft. Autologous procedures are those using a person's own cells, tissue or organs. In this case, it's tissue from the olfactory bulb, obtained with a thin tube inserted into one or both nostrils to an area high up in the nasal cavity. The tissue is transplanted into the spinal cord injury site, after the site is cleared of scar tissue that forms after an injury.

The hope is that these transplanted cells will form new nerve cells and neural connections between the spinal cord and brain, a sophisticated rewiring feat.

The Rehabilitation Institute is conducting stem-cell research on animals with damaged spinal cords and charting outcomes on surgery patients undergoing rehabilitation there. The institute hopes to do the procedure someday in Detroit.

The Lisbon doctors recently trained teams in Panama and Columbia to do the procedure.

So far, all 44 patients screened in Detroit and who have undergone the Lisbon operation have shown improvement, Hinderer said. It is affiliated with the Detroit Medical Center and the Wayne State University School of Medicine. The institute has followed the patients for at least a month, and some for as long as two years.

All have some "return of sensation and voluntary muscle function," Hinderer said.

Though none are walking without braces, many can walk on their own in leg braces, holding on to parallel bars, walking devices or other people. Many now can feed themselves; some can move from a seated to standing position and several have improved bladder and bowel function, requiring less care from others, Hinderer said.

"At some point they will plateau, but I don't expect that for another year or more," he said.

Not all the patients share a goal of eventually walking. Becoming more independent is more important to many of them, Hinderer said. In the meantime, hundreds of patients are applying to the Rehabilitation Institute for the surgery. The institute has screened 57 patients to date, most since last July.

Thirteen more patients screened in Detroit are scheduled to travel to Lisbon for the surgery this year, and 42 others await word about qualifying for surgery, according to John Elliott, director of physician services at the institute.

Candidates for the Portuguese procedure are people with a spinal cord injury less than 6 years old and who are younger than 40. The age limit was set by the Lisbon team because nerve cells from the olfactory bulb change in function as people age, from cells used in smelling to ones that help with breathing.

By next year, the institute hopes to get approval from the U.S. Food and Drug Administration to begin a study of the procedure in the United States. But first it must present compelling results from animal studies that show the surgeries would pose no risk to people and are likely to be beneficial.

Federal health authorities also want published studies that follow the outcomes of patients undergoing stem cell surgery.

Finding independence

Just like a baby, attempting and achieving movements like standing and walking after a spinal cord injury takes time. The rigorous therapy takes commitment, and some aren't up to it.

Cortney is.

Always trying, often smiling, she makes the one-hour drive from her home to Detroit three times a week for three hours of rehab. The institute charges $1,400 to $4,000 a month, depending on the number of weekly visits. Insurance coverage varies. In Michigan, neither the Medicaid nor Medicare program pay for the rehabilitation.

Cortney's new goal is to walk in her braces. She's also learning to drive again, in a car operated by hand controls. Taking just a few steps with help last week thrilled her.

"This is how it starts," said Bill Thornton, a physical therapist at the institute. "Each day, a little more. Each time she stands, each time she takes a step, it will get a little easier."

Cortney nodded in agreement.

"I know it's going to take hard work and time. I expect smaller gains first. After that, who knows?"

She will give herself a day off and be back for more.