Groundbreaking Program Effectively Prevents and Manages Condition that Can Impede Rehabilitation

As part of its ongoing efforts to improve the standard of care for patients with spinal cord injury (SCI), Shepherd Center is implementing an innovative program to treat lymphedema, an unhealthy buildup of excess fluid beneath the skin that can impede rehabilitation. The new program is among the first to proactively address the condition in people with these types of injuries, and it’s already having a positive impact.

“The earlier and faster we can address swelling, the better,” said Rebecca Hammad, MHS, therapy manager for the Spinal Cord Injury Post-Acute Program, who leads the lymphedema program at Shepherd Center. “There are huge functional benefits to getting the fluid out. But traditional approaches don’t seem to work well in our patients, and many providers won’t offer these interventions to people who cannot feel or who have limited movement.”

Hammad, who has primary lymphedema, knows first hand the challenges this condition can present. An avid dancer for most of her life, the fluid in her leg eventually drove her away from her favorite pastime. Motivated by her personal experience and a desire to improve patient care, she decided to take an intensive, three-week course to become certified in treating lymphedema.

Lymphedema occurs when the lymphatic system – a sophisticated network of vessels and nodes that help the body get rid of extra fluid and waste – does not work properly. What results is a noticeable buildup of fluid, most often in the arms or legs.

Although lymphedema is traditionally thought of in the context of cancer, it also presents serious problems for many patients with SCI, whose weakened muscles are no longer able to help push the fluid through the body. This stagnant pool of fluid can lead to other problems, including chronic swelling and stiffness, clots and infection. For people who already have impaired movement, trying to lug 15-plus pounds of extra fluid can hinder efforts to regain function – and it burdens caregivers.

“My leg would balloon up,” said Harley Smith, 57 of Decatur, Ga, who sustained a C-5 to -6 SCI while jumping on a trampoline. “My leg was so big, I had to take my shoelaces off to have any hope of getting my foot in my shoe.”

Lymphedema is common after changes in movement and feeling, but traditional methods such as Isotoner gloves, stretching tape and deep massage don’t work in this setting, Hammad explained. She and other therapists at Shepherd Center have found ways to adjust the techniques. For example, they use fewer layers of bandages when wrapping to apply gentle pressure, and they use light massage for this patient population.

The goal for Harley was to get his swollen right leg – twice the size of his other leg -- back to the same size. After three weeks of massage and daily wrapping, the swelling went down.

“My leg looks normal now,” he said. Today, he wears a custom garment to help compress his calf and foot to keep the swelling down. In a new pilot study, Shepherd Center clinicians are assessing whether use of a higher-grade compression stocking can help prevent clots and lymphedema.

“Once it is under control, it can be life changing. I have found sometimes patients are so swollen and stiff that when we remove the fluid, their leg or arm is lighter, their joints more supple and I’ve seen flickers of movement in toes and fingers and biceps,,” Hammad said. “The old way of waiting for the fluid to move just doesn’t work.”

She has seen patients who have a lot of potential to use their arms or who might benefit from surgical procedures to help regain function, but the chronic swelling and stiffness from lymphedema can mean they are no longer a candidate for some therapies.

Today, Shepherd Center has 12 lymphedema-certified therapists working across its inpatient and day programs thanks to a five-day intensive course held in partnership with Shepherd Center partner Kindred Healthcare earlier this year. Most of the patient referrals are for people with additional conditions, such as diabetes, that already tax their body’s ability to process and eliminate fluid.

A Four-Step Process

Lymphedema treatment – or complete decongestive therapy, as it is referred to medically – involves four steps:

1. Skin care: Therapists focus on keeping the skin intact, which guards against infection.
2. Manual lymph therapy or drainage: Unlike retrograde or deep massage, therapists apply a light-touch technique that is done at the surface level of the skin to help stimulate the lymphatic system and promote the flow of fluid. When therapists push down to the muscle level, they can actually squish closed the more superficial (skin-level) lymphatic pathways.
3. Compression through bandaging and/or garments: Wrapping helps soften the thick fluid and provide the right pressure to reduce the size of the limb; garments help to maintain these gains.
4. Specialized exercise program: Exercises are incorporated into what patients are already doing in therapy. The main difference is that therapists will reverse the order of exercise to start closer to the body and then work outward to the extremities.

Therapists track patients’ progress by measuring the circumference of the leg at specific points and estimating the volume of fluid. It is not unusual to be able to remove all the fluid, visually reducing the size of the limb by 25 percent using these techniques, Hammad said. “We can see results fairly quickly because the lymphatic system is not damaged; it’s just slowed,” she added.

“Lymphedema has presented a problem for patients with SCI and traumatic brain injury for years, and no one really knew what to do with it,” said Shari McDowell, PT, DPT, SCI Program Director, who supported Hammad in this endeavor. “But we now have the expertise and evidence to know that these interventions work.”

Anna Elmers, M.D., a Shepherd Center staff physiatrist agrees.

“It’s always better to stay ahead of the game with swelling,” she said. “Having therapists who already know SCI and are trained in complete decongestive therapy has been great for my patients. It’s just another example of expanding our services based on what our patients may benefit from.”

More information on spinal cord injury rehabilitation at Shepherd Center is available here.

Written by Amanda Crowe, MA, MPH
Photos by Jane M. Sanders