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Congenital Lymphodema: A Seriously Swollen Leg?
About six years ago my left ankle began to swell. I was diagnosed with likely "congenital lymphedema." The swelling has gradually increased and moved into the calf. What can I do?
Answer (Published 11/20/2008)
Lymphatic fluid, originating from blood, travels through a diffuse network of vessels and nodes, eventually rejoining the bloodstream near the heart. Lymphedema is an accumulation of that fluid in an extremity that usually develops after surgical removal of lymph nodes. Up to 25 percent of breast cancer patients whose surgery includes removal of lymph nodes in the area of the armpit eventually develop the condition in their arms. It can occur immediately after radiation or surgery or weeks, months, and even years later. When it does, it is called "acquired lymphedema," but the problem can also be present from birth, probably the result of incomplete development of lymphatic vessels.
No matter when lymphedema develops, the symptoms are the same: an accumulation of lymphatic fluid in tissues of the arms or legs, causing swelling, pain and, sometimes, infection.
If you haven’t already, I recommend that you try lymphatic drainage, also called lymphatic massage or manual lymph drainage, a technique developed in Germany. To find a therapist skilled in lymphatic massage go to the National Lymphedema Network Web site at www.lymphnet.org. I would also suggest staying off your affected leg as much as possible, and try keeping it elevated when you are seated. However, since exercise can help accumulated fluid to drain, be sure to ask your physician or therapist about appropriate exercises. I’ve seen some reports that a low sodium diet can help prevent fluid accumulation, but I know of no scientific evidence that supports this approach. Still, it might be worthwhile to cut back on your salt intake to see if it helps. If you notice that your symptoms worsen after drinking wine or other forms of alcohol, try to cut back there, too.
In general, protect your affected leg. Try to avoid even minor injuries because cuts, scrapes and burns can lead to infection. Protect yourself from sharp objects: if you shave your legs, use an electric razor. Avoid heat (don’t use a heating pad on your leg) and tight clothing. Check the skin on your leg daily to spot any small injuries or changes that could lead to infection.
Andrew Weil, M.D.
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