Living With Lymphedema
Lymphedema can be caused by surgery or radiation — the cost of compression garments to treat the condition will soon be covered by Medicare
Have you had surgery in the past year or two? Do you have swelling, reduced range of motion in your arms or legs, discomfort or pain, thickened skin in your extremities, recurring infections or other uncomfortable and unexpected symptoms?
These are all possible signs of lymphedema, a buildup of a colorless, protein-rich fluid called lymph, usually drained through the body's lymphatic system. This network of organs, tissues and vessels throughout the body helps maintain average fluid balance, filter out toxins and transport nutrients to the cells.
The most common cause of lymphedema in the United States is damage to the lymphatic system as a result of surgery or radiation, usually for cancer treatment.
When that network is damaged, fluid builds up, causing swelling and making the body more susceptible to infection. While lymphedema generally occurs in the arms or legs, it can also occur in the chest wall, abdomen, neck, trunk and genitals.
The most common cause of lymphedema in the United States is damage to the lymphatic system as a result of surgery or radiation, usually for cancer treatment. Vascular disease, traumatic injuries and congenital conditions are other causes.
According to Breastcancer.org, a leading online resource providing education about cancer and breast health, 30% of people diagnosed with breast cancer develop lymphedema, along with 40% of people with cervical cancer, and 75% of people with head and neck cancer.
As reported by Sean Robinson Smith, MD, a physiatrist, Medical Director of Michigan Medicine's Cancer Rehabilitation Program in Ann Arbor, Michigan, and a Clinical Associate Professor of Physical Medicine and Rehabilitation, the timing of the development of lymphedema can be highly variable, ranging from soon after surgery to the more typical pattern of appearing six months to more than a year post-operatively.
"This late onset is because the body is generally resilient and can maintain lymph flow for quite a while. Eventually, though, like a traffic jam that gets hopelessly backed up, the lymphatic vessels become so congested that they cannot do their job. That is why it is crucial to identify and treat lymphedema early before scarring and fibrosis can occur," he explains.
Identifying the Cause of Lymphedema
Lymphedema treatment is overseen by a physician, usually a physical medicine and rehabilitation specialist. Smith says, "One of our main roles is to correctly identify the cause of the lymphedema and to differentiate it from inflammation or other issues that might also affect the lymphatic system. We must rule out nerve dysfunction or cardiac or kidney issues which might also cause edema (swelling)."
"The mainstays of lymphedema care are complete decongestive lymphatic therapy (DLT), which involves the use of compression bandages, skin care, exercises and a specialized massage technique called manual lymphatic drainage, done by a qualified lymphedema therapist," he explains.
"Eventually, like a traffic jam that gets hopelessly backed up, the lymphatic vessels become so congested that they cannot do their job."
A pneumatic compression pump, used for one hour daily, is sometimes added to the regimen. Compression sleeves, specialty stockings, shorts and shirts, made from stretchy materials designed to apply varying amounts of pressure to body parts, significantly improve blood flow and reduce pain and swelling.
These specially designed and fitted garments are different than over-the-counter ace bandages or stockings you might wear after an ankle sprain or for conditions such as varicose veins. In more severe cases, or where conservative treatment has failed, surgical therapies, such as a lymph node transfer or a lymphatic bypass procedure, may be recommended.
Treatment and Self-Care
Smith has several important take-aways for people living with lymphedema. They are:
- Please educate yourself about what lymphedema is and how it affects your body.
- Understand the myths and realities about lymphedema. One common misconception is that blood draws, or pressure measurements, should not be done in an affected arm. You can ask that your other arm be used if it's painful.
- Follow the advice of your treatment team. Compliance encompasses everything from using compression garments as directed to performing (or having your therapist perform) lymphatic manual drainage as often as clinically indicated.
- If therapeutic exercises to maintain range of motion and prevent joint immobility are suggested, check with your rehab team to ensure you do them correctly.
- Remember that maintaining a healthy weight and lifestyle, moving your body and using your muscles suit the general lymphatic system.
Financial Matters and Health Insurance
Many people with lymphedema have struggled to get health insurers to pay for compression garments, with coverage varying among private insurance plans. Legislation to provide Medicare coverage for lymphedema treatment has been repeatedly introduced in Congress but defeated since 2002.
Medicaid programs have traditionally covered at least some of the expenses of the garments, whereas, through the end of 2023, Medicare has not. That, however, is about to change. The long-awaited passage of the Lymphedema Treatment Act means that starting in January 2024, Medicare coverage will be available for both standard and custom-fitted compression garments used for therapy.
This highly supported health care bill is excellent news for the approximately ten million Americans treated for lymphedema. On a positive note, when Medicare coverage is expanded, many private insurers often follow suit, which is the sincere hope of people who are not yet eligible for Medicare.
"Lymphedema is a chronic condition, but it doesn't have to ruin your life."
According to the Centers for Medicare and Medicaid Services (CMS), when the patient has Medicare Part B coverage, an official diagnosis of lymphedema, and a prescription given by an authorized practitioner, Medicare will pay for the following:
- Compression garments with different compression levels
- Bandaging systems and supplies provided during the initial decongestion phase and maintenance phases of treatment
- Gradient compression wraps with adjustable straps
- Necessary accessories such as lining, padding and zippers, as well as aids for putting on and taking off ("donning and doffing") items for different body parts, such as lower limb "butlers" that help patients apply compression stockings
Medicare will pay for garments for daytime use every six months and, for nighttime use, two garments every two years. (Not everyone needs to wear garments while sleeping.) It will also pay to replace damaged items or if a new garment is necessary because of a change in the size of the affected body part.
Unfortunately, because surgery to remove the affected tissue or transfer lymph nodes from another part of the body to the damaged area is not currently considered the standard of care, insurers have been reluctant to pay for it. The new law is not expected to change this.
Health advocates emphasize that if your health insurer refuses your claim for lymphedema supplies or services, it is essential to be proactive and file an appeal. Because lymphedema has both emotional and physical ramifications, connecting with others who have a similar condition can be comforting and empowering.
The Lymphology Association of North America's website lists online and in-person support groups nationwide. "Lymphedema is a chronic condition, but it doesn't have to ruin your life. Staying vigilant and recognizing the importance of following treatment recommendations will give you the best shot at having your lymphedema resolve to a more manageable state," says Smith.
