Dear Doctor: I have Stage 1 lymphedema in my left leg, which causes pain and swelling. I do self-massages every morning, but it's not enough. Can anything reverse this? I've heard that lymph node replacement hasn't been very successful.
Dear Reader: First, let me acknowledge the frustration you must feel, not to mention the pain. This can be a difficult condition to treat.
Here's what happens: The lymphatic system is part of the circulatory system of the body -- only instead of circulating blood, it circulates lymph, a clear fluid that contains waste products from proteins; cells, including white blood cells; and sometimes bacteria. Lymph nodes filter the lymph of infection and possible cancer cells. The lymph eventually drains upward toward the heart, where it returns into the bloodstream. When the lymphatic system is disrupted, it leads to lymphedema, the swelling of an arm or leg caused by stagnant fluid within the limb.
Such disruptions can occur due to infection or cancer in the lymph nodes; radiation therapy or node removal as part of cancer treatment; or sometimes, due to none of these causes. The latter is termed primary lymphedema. The condition is often inherited; is more likely to occur in the legs; and is more common in women.
Stage 1 lymphedema, with which you have been diagnosed, is characterized by swelling that can subside if the limb is kept elevated for up to 24 hours. If not treated properly, Stage 1 lymphedema can develop into Stage 2 or Stage 3, causing inflammation, infections and scarring of the dermis, the thick layer of skin below its surface. In Stages 2 and 3, lymph can't return to the heart, even with elevation of the legs.
My first suggestion is to keep your legs elevated as much as possible and to avoid positions that put more pressure on the lymphatic system, such as prolonged standing, sitting or resting cross-legged. Second, keep your weight down, because obesity can worsen lymphedema. Third, watch for signs of infection and help prevent infection by keeping skin moist to prevent small breaks in it.
The type of massage that you do, called lymphatic drainage, helps move lymphatic fluid upward. Physical therapists trained in manual lymphatic drainage can accentuate this upward movement, as can the daytime use of compression stockings.
The node-replacement procedure you reference is called vascularized lymph node transfer (VLNT), in which a lymph node is transferred from one part of the body to another to help lymphatic drainage. It's sometimes used for breast cancer patients who develop lymphedema in the arm after having lymph nodes removed from the armpit. In those cases, a lymph node is transferred from the groin and connected to the lymphatic system in the armpit.
A 2016 study of 305 VLNT patients found a noted reduction in limb swelling and a decreased rate of infection of the affected limb. However, this procedure was predominantly done on patients without primary lymphedema, so it may not be applicable to you.
The T-cell inhibitor tacrolimus has shown an ability to prevent inflammation and scarring of the dermis in animal studies of lymphedema, but human research is needed.
In summary, use compression stockings, keep doing the massage techniques and seek out a physical therapist for lymphatic drainage. But most important, don't give up. You don't want the lymphedema to progress further.