Frequently Asked Questions

Lymphedema is a failure of the lymphatic system and when it fails, the result is swelling in the tissues. This swelling is a protein rich fluid, unlike the water swelling that responds to dieuretics, or temporary swelling after an injury or surgery. It is a permanent condition for which there is no cure. The swelling most commonly occurs in the arm or leg, although it can occur in other places of the body.

Damage to the lymphatic system puts a person at risk for developing lymphedema. There are two categories of lymphedema: Primary and Secondary. Primary lymphedema has genetic origins. Swelling may appear at anytime prior to age 30. Secondary lymphedema is the result of either a parasite (commonly in third world countries) or damage to the lymphatic system. The leading cause of lymphedema in our country is cancer treatment. Lymph nodes are removed and as a result the normal pathway is interrupted and lymphedema can be the result.

Each body is designed differently, with different numbers of nodes and vessels, different numbers of connections between the areas of the body that drain fluids. Radiation therapy in combination with surgery and chemotherapy increases the risk of lymphedema occuring over time. An interrupted lymphatic system can function for years before it becomes overloaded and can no longer keep up with the lymphatic load of the body and the result is lymphedema.

The primary concern and focus of the oncologist is to treat the cancer, to save the life of the patient. Also, until recently very little information regarding the treatment of lymphedema has been available in our country. Information about lymphedema and its treatment is becoming more available now and we can expect it to become part of the training in medical schools.

Management of risk may or may not affect the occurrence of lymphedema. Lymph node removal and/or radiation treatment puts you at risk for the development of this disease. The question is always: "Should I alter my lifestyle to avoid a disease that I may not develop?" This question is best answered individuallly. However, there are some things that are simple to avoid and physicians advise these precautions: no needle sticks, blood pressure cuffs, extreme temperatures (hot tubs, saunas, hot summer days in the sun), and weighted, repetitive motions or heavy lifting.

Manual lymph drainage massage is relaxing, painless and can help the lymphatic system recover through reinforcement of connections (anastomoses) in the lymphatic system. It is a natural way to assist your body as it heals and tries to build new vessels and the massage reinforces the connections of the lymphatic drainage fields in your body.

Stage III lymphedema is the disfiguring stage of the disease and not all lymphedemas progress to this stage. Lymphedema progression is measured in stages. Stage 0 is the latency stage - the state of being at risk for lymphedema but having no symptoms.

Stage I is really a 2-part stage: the preclinical and the clinical stages. Preclinical lymphedema has no visible signs, but the limb feels heavy and aches. In clinical Stage I the visible signs appear, occasional swelling that subsides.

Stage II lymphedema is constant swelling that does not subside completely. The accumulation of proteins swells the limb and if pressed will retain an impression which is called "pitting edema". Mosts clients will stay at this stage without progressing further.

Stage III lymphedema is also known as lymphostatic elephantiasis. The swelling has become so hard that pitting is no longer possible because the tissue is so hard.

It is best to recognize and treat lymphedema while still in Stage I. Stage III is rarely seen where education and treatment are available, and even in places where education and treatment are unavailable not all cases will become this severe.

Combined decongestive therapy (CDT) consists of manual lymph drainage, compression therapy, breathing exercises, appropriate physical excercise and skin care. Compression is accomplished with short-stretch bandaging moving toward compression garments as lymphedema is managed. Best results are obtained with full patient participation in the therapy.

Lymphedema left untreated will only get worse. It is a progressive disease which is susceptible to infections such as staph and strep. These infections further damage the system and can be life threatening. They require hospital treatment with strong IV antibiotics.

Discomfort with untreated lymphedema will increase over time as range of motion will be reduced. If you do not control your lymphedema, it will control your life.

Therapists who receive specialized training in treatment of lymphedema are referred to as lymphedema therapists. The training to become a lymphedema therapist is open to a variety of health professionals including doctors, nurses, physiotherapists, occupational therapists and licensed massage therapists. Certification is available to lymphedema therapists who have completed training at a verifiable school. The training must consist of AT LEAST 135 hours of lecture and hands-on work at the school.

Ask your therapist these questions:

      1. How many hours was your lymphedema course?

The correct answer is 135 hours or more. They should have a certificate available for you to see. If their credentials are up to date, they should be able to give you the website and their name will appear on the "find a therapist in your area" on that site.

      2. What method of treatment do you use?

The correct answer is "combined decongestive therapy", consisting of manual lymph drainage, compression bandaging, skin hygiene, exercise and compression garments.