Depending on the seriousness of your case, treatments can range from a simple hand massage, exercises, and instructions to keep your arm elevated for a portion of each day; to daily hours-long treatments for several weeks, followed by wearing a wrist to shoulder elastic sleeve, potentially for life.
Q. I’ve just been diagnosed with lymphedema. What are the treatments like?
A. Depending on the seriousness of your case, treatments can range from a simple hand massage, exercises, and instructions to keep your arm elevated for a portion of each day; to daily hours-long treatments for several weeks, followed by wearing a wrist to shoulder elastic sleeve, potentially for life. In other words: HUGE possible range of treatments. You won’t know what YOUR treatment will be like till you see the physical therapist or lymphedema therapist for the first time. However, you can hazard a guess, based on how much swelling you see and feel in your arm/chest area: the greater the swelling, the more advanced the lymphedema probably is, the longer-lasting the treatment will be.
Q. So, let’s take a middle-of-the-road scenario, just as an example. What might that look like?
A. At your first visit, the PT will measure both arms very carefully, taking their circumference every few inches from wrist to shoulder. He or she will also look at your back, chest, and under your arms on both sides, to see how different one side looks than the other; and examine both hands, for the same reason. Not only does all this measuring give you both an idea of how swelled one side is compared to “normal” (the other side), but it gives you a benchmark so you can measure how much the swelling goes down as you go through treatment.
For moderate swelling, you’ll probably be treated to a “waist up” massage that involves undressing, and lying under a light sheet while the therapist very gently strokes your hands, arms, chest, and back. Called “decongestive therapy,” this gentle stroking helps get the lymph fluid moving, rather than pooling in your arm or chest, which is what causes the swelling. And boy oh boy, isn’t it relaxing! You’ll think you’re at a spa. Again, depending on the severity of your case, you may come for therapy every other day, or even 5 days a week for several weeks; each treatment will take upwards of an hour or so.
After the massage, the therapist will probably wrap your hand and arm in elastic ace-bandage-type wrappings. Sometimes, he or she may add compression padding, to force the fluid in certain directions. This is very bulky, and you’ll look like The Mummy; it also keeps your arm pretty stiff and straight, so don’t plan on playing tennis or going bowling! But don’t worry, this kind of wrapping doesn’t usually last for longer than a few days at a time.
Q. So, how long does this whole thing take?
A. Probably several weeks, at least. Plan on that, anyway; if it’s less, so much the better.
Oh, and one final piece of advice: start fighting with your insurance company right away. For the most part, insurance companies have been slow to recognize that lymphedema, though it’s treated through your hospital’s PT department, isn’t a simple sprained ankle or strained knee; it takes LOTS of therapy. If your insurance plan limits you to, say, $200/year of therapy, you’ll probably use that up on the first visit. In addition, insurance companies seem to hate paying for the elastic sleeve you may end up wearing, and it can cost $400 or more. Get your doctor to write a letter to the insurance company about what lymphedema is, and its consequences if not treated. Then follow it up with a letter yourself; hopefully you’ll find a sympathetic ear somewhere. Good luck!
PJ Hamel is senior digital content editor and food writer at King Arthur Flour, and a James Beard award-winning author. A 16-year breast cancer survivor, her passion is helping women through this devastating disease. She manages a large and active online survivor support network based at her local hospital and shares her wisdom and experience with the greater community via HealthCentral.com.