Most of us have experienced swelling of a limb or digit. Painful, annoying and even debilitating as it might be, the swelling in most cases subsides. But for a surprising number of people, swollen arms, legs, ankles and fingers are a fact of life – and will continue for the rest of their lives.
They suffer from lymphedema, which occurs when abnormal amounts of protein-rich fluid accumulate in tissue, causing body parts to balloon. An estimated 10 million people have lymphedema; it can’t be cured, but it can be managed with proper treatment, said Vicki Ralph, OT, an occupational therapist at University of Colorado Hospital.
Ralph has specialized training in treating lymphedema and has done so for more than a decade. She maintains a busy schedule in the Rehabilitation Medicine Clinic at UCH, seeing on average nine lymphedema patients a day, four days a week. She’s not alone. Several other OTs at UCH treat lymphedema patients, as do colleagues at UCHealth Northern Colorado and Colorado Springs.
One reason for the heavy caseload is a lack of resources. Across the Front Range, there are about 75 therapists with lymphedema certification earned through 135 hours from Klose Training and Consulting or other schools of lymphatic education. About one-fifth of those are with UCHealth hospitals. But Ralph says there are no physicians in Colorado who specialize in treating lymphedema and patients sometimes go years without being diagnosed correctly.
The Klose training for the understanding of lymphedema involves 90 hours of classroom work and 45 hours of online work, respectively, to learn to administer Complete Decongestive Therapy, essentially a treatment bundle for lymphedema (see box). The ultimate aim is to relieve a condition that is debilitating and risky.
Living large: no way to live
It’s also sometimes misunderstood, Ralph said. For example, providers sometimes prescribe diuretics, thinking that removing water from tissue will relieve the swelling. But ridding the body of water only increases the build-up of the fluid that causes the swelling, she said.
Lymphedema generally doesn’t cause severe pain, Ralph said, but it can make movement very difficult. Raymond Stone, 83, of Aurora, said his badly swollen legs rubbed together, making it difficult for him to walk. Stone, who was born with the condition, said it began to worsen around the age of 55, forcing him to change his pants size and endure living with legs that looked as if they were encased in large red casts before Ralph began treating him in 2009.
“It was hard to walk around,” Stone said. “You can’t move about freely. You have to go up the stairs slowly.” Stone received regular treatment from Ralph, who vigorously massaged his legs to drain fluid and meticulously wrapped them in special elastic bandages for support. After regular treatment with Ralph, the swelling in his legs has decreased dramatically.
Lymphedema also puts its sufferers at risk of infection. The accumulated fluid acts like a “built-in petri dish under the skin,” Ralph said. “Any kind of scratch, cut or bite will allow bacteria to flourish.”
There is no single cause of lymphedema. Stone is among a minority of people born with the condition, known as primary lymphedema. Secondary lymphedema arises from a variety of factors, including morbid obesity, trauma, and weakened veins, that impede the movement of tissue fluid. Cancer patients who have had their lymphatic nodes and vessels damaged or removed are also vulnerable.
Angela Marquez, 55, a sales representative who lives in Lone Tree, is a nearly decade-long survivor of cervical cancer. She underwent chemotherapy and radiation and had three dozen lymph nodes removed, but she didn’t have any symptoms of lymphedema until March 2016 when she noticed her left ankle swelling. She initially thought she’d sprained it, but the swelling spread to the rest of the leg, and after a series of emergency department and clinic visits, her primary care physician referred her to Reza Rajebi, MD, an interventional radiologist at UCH.
Rajebi discovered that Marquez suffered from May-Thurner syndrome, a rare condition that occurs when the left iliac vein compresses the right iliac artery, obstructing blood from draining from the lower part of the body.
Images showed that Marquez’s iliac vein was 50 percent closed, so in late April Rajebi implanted a stent to open it, restoring blood flow and reducing the risk of a life-threatening blood clot. But by early June, Marquez’s left ankle was still more than a third larger than the right. Rajebi confirmed that Marquez had lymphedema and referred her to Vicki Ralph.
It’s a wrap
The treatment began in mid-June, with Ralph giving Marquez manual therapy two or three times a week. Marquez also wore the elastic compression bandages 22 hours a day during a hot Colorado summer. That wasn’t pleasant, Marquez said, but Ralph’s care paid off. On Aug. 7, Marquez’s left ankle was just 8 percent larger than the right. She now sees Ralph once a month.
“I don’t want it to get back to the size that it was,” Marquez said, adding that Ralph “instilled confidence and hope” that she could get better.
Marquez stressed, however, that improvement depends on rigorously following the treatment plan. She had her husband come to her first appointment to take video footage of Ralph wrapping the bandages so she would have an in-home reference. She said she’s also used Instagram to connect with other lymphedema patients and seeks out additional information and research about the condition on the Lymphatic Education & Research Network (LE&RN), which has gained attention from the support of actress Kathy Bates, a lymphedema sufferer.
Raymond Stone’s experience shows that both patients and providers could improve their understanding of lymphedema. Drafted into the Navy in 1959, Stone served as a medic on a destroyer squadron for two years. After medical school he worked in private practice and at the Veterans Administration Medical Center in Kansas City, Mo., then moved to El Paso, Texas to join an independent outpatient clinic before retiring in 1995. Yet none of that experience helped him mitigate his condition.
“I knew nothing about treating lymphedema,” Stone said.
Like Marquez, Stone is determined to hold the swelling at bay and maintain the improvements he made with Ralph’s help. He said he removes his custom-made compression garments only two hours a day to ensure his legs get nearly continuous support.
Ralph wants more patients to get the relief Stone and Marquez have enjoyed. She said her goal is to establish UCHealth as a “center of excellence” for lymphedema treatment.
“There is so much need,” she said. “We’re hoping to create a center for research, understanding and improved recognition of lymphedema. It is my hope that within the next five years, all physicians and health care professionals within the UCHealth system will understand the basic concepts of lymphedema, recognize it and refer these patients for appropriate care.”
The lymphedema treatment bundle
Vicki Ralph and other lymphedema treatment specialists follow a protocol called Complete Decongestive Therapy. The components include:
- Manual lymph drainage
- Compression bandages that provide support to muscle but relax when the individual rests
- Skin and nail care to keep the skin moist and prevent cuts and scratches
- Self-care management, including self-massage and bandaging