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Battling Lymphedema:
A Complex—But Treatable—Condition

by Anita Martin

If you dust off your memory banks, you might remember studying the lymphatic system in school. When asked, few of us can clearly explain its significance to health and wellness. But for those with lymphedema, like Betty Oertel of Lake Mills, learning more about the lymphatic system is one of the first steps in treating this disorder.

Researchers refer to it as the body’s “second circulation system,” and it functions as part of the immune system. The lymphatic system consists of lymph vessels and lymph nodes that run through the body. If the vessels become damaged or are missing, the lymph fluid cannot move freely through the system. When this system fails to function properly, lymph and protein-rich fluid accumulate in the soft tissues. This causes swelling in various parts of the body, or lymphedema. Swelling often occurs in the extremities, but there may be trunk, neck, facial or head swelling, as well.

Two Types of Lymphedema

There are two categories of lymphedema, primary and secondary. Primary lymphedema results from a birth defect and is relatively rare.

Secondary lymphedema occurs when lymph flow is disrupted by injury, high fever, scar tissue/surgery or radiation therapy. Lymphedema is seen in folks with different types of cancer, including breast, prostate, cervical, lung and thyroid cancer and melanoma. It often occurs alongside other disorders such as diabetes, obesity, cardiovascular disease, venous insufficiency and cellulitis.

Although lymphedema can arise right after surgery, years may pass before it develops. “Some people who’ve had cancer treatment may not develop lymphedema for 20 or 30 years,” said Liz Pomeroy, OTR, CLT/LANA. A registered occupational therapist at the Fort HealthCare Therapy & Edema Center, Pomeroy is a certified lymphedema therapist through the Lymphology Association of North America.

A Treatable Disease

Lymphedema is complex and often misunderstood. Just as timing varies from individual to individual, symptoms range as well, from mild to severe. “It is a disease,” explained Pomeroy. “It’s lifelong. It will not go away, but it is treatable. It has to be managed, though. You have to make a lifestyle commitment to make it work.”

Timely treatment can help prevent the development and progression of the disease. The treatment of lymphedema uses devices and techniques that help unblock lymph flow. Lymph fluid is made up of cellular waste and proteins, and it recycles the waste out of your body. “Our job is to reroute their system,” said Pomeroy, to help the body develop pathways to take care of itself. Treatment includes manual lymph drainage (MLD), compression therapy using bandages to help reduce swelling, compression garments, exercises and special skin care.

A Journey Toward Healing

One person who has made such a lifestyle commitment is Betty Oertel, who has primary lymphedema. Oertel suffers from a severe form of the disorder called lipolymphedema. About 10 or 15 years ago, she spent four hours a day on a lymphopress machine, a treatment that’s no longer prescribed, to rid her body of excess fluid. Convinced that she was “just fat,” she set out to lose weight on a medically supervised liquid diet. “I lost 70 pounds, but my legs kept growing,” she said.

About a year and a half ago, doctors began talking about amputating her left leg. “At that time, they were estimating that my left leg alone weighed 100 pounds,” Oertel said. Instead, a surgeon at UW Hospital and Clinics ordered MLD treatment by a certified lymphedema therapist.

Oertel has undergone rigorous treatment for the past 12 months. When she first came to see Pomeroy, she couldn’t get into bed without help from her husband, she couldn’t sit in a recliner and she had extreme difficulty getting into and out of a car. “I actually can see my ankle now; I haven’t seen it in years,” said Oertel, smiling. She can now get into bed on her own, roll over on her own and get in and out of cars much more easily. An elementary music teacher, Oertel uses a unicane, a walker with a seat to be used as needed. She’s named it Wanda, and it helps her maintain balance.

Initially, Oertel received therapy five times a week. That’s gone down to three days a week. “My goal for her is to be done with treatment by this summer,” said Pomeroy.

Lifestyle Changes Go a Long Way

Managing Oertel’s lymphedema includes daily exercises, deep abdominal breathing, self-massage to help reroute the lymph and plenty of water consumption. “Getting the joints and limbs to move is important,” Pomeroy explained. “You have to use your muscle pumps to help push out the fluid. The majority of lymph nodes are in the abdomen and neck, which is why deep breathing is so important.”

Both Pomeroy and Oertel find that misconceptions abound when it comes to lymphedema. People ask, “Why don’t they just cut it out? Can’t you just poke a hole in it and drain it? Why does the fluid have to leave the body through these natural processes?”

Oertel is convinced that more people need to know about the condition. “Care is available before people are at a point where amputation is an option.” She’s “still in awe” that Fort HealthCare makes the lymphedema program a priority. “I don’t know how to express how lucky we are to have it here,” Oertel emphasized.