This was started by Anne, a registered nurse who is also a member of our Advocates for Lymphedema Yahoo support group and edited by our resident lymphedema treatment advocate and champion Bob Weiss and I wanted to share it here.
1) Lymphedema is NOT ALWAYS associated with cancer or cancer treatment. Other common causes are surgical procedures, radiotherapy, physical trauma, joint replacements, coronary artery by-pass grafts, skin infection (cellulitis or lymphangitis).
2) Lymphedema can occur in areas other than a leg or an arm. Common other sites of lymphedema are breast/chest, torso, abdomen, external genitalia, head and neck
3) A thorough explanation (or demonstration if possible) of MLD and CDT. The current recommended medical protocol for treatment of lymphedema, complex decongestive therapy or CDT, is a multimodal protocol involving:
a) manual lymph drainage (MLD) - a manual technique for stimulating the lymphatic system and decongesting the affected body area by directing enhanced lymphatic flow in a proximal direction toward the subclavian venous trunks.
b) compression therapy - application of external short-stretch bindings or garments to maintain compression on the affected body area to maintain the decongested state achieved by MLD.
c) exercise - in addition to the general conditioning exercises (stretching, strength, endurance) daily performance of decongestion exercises while the limb is compressed, utilizing the arm or leg muscles to pump fluid and reduce edema.
d) skin care - meticulous skin care to maintain an unbroken skin barrier.
4) A listing of therapists in your area certified to treat Lymphedema
5) NO blood draws, IVs or BPs in an effected limb.
6) LISTEN TO YOUR PATIENT! Onset of lymphedema is very often signaled by patient sensations of pain or heaviness even before measurable swelling presents.
7) GET A THOROUGH HISTORY! Consider that primary congenital lymphedema is often inherited, and sometimes appears later in life. The risk of secondary lymphedema may also be genetically determined, explained by genetically determined variations in the structure of the individual patient's lymphatic system.
8) Lymphedema can be very painful. Listen to your patient and medicate accordingly! In many cases pain in a lyphedema patient can be completely alleviated with a session of manual lymph drainage by a professional therapist, and in some cases by self-MLD by the patient.
9) Make your patient aware of the need for excellent skin care.
10) Don't be afraid to admit you don't know it all! Ask questions of others who are more knowledgeable about Lymphedema than you are. (Many times this will include the patient you are treating.)
11) Search the net for information. There are some excellent reliable sources of knowledge on Lymphedema, including Lymphedemapeople; National Lymphedema Network and the National Cancer Institute, to name just a few.
12) Educate others in your practice who are in contact with these Lymphedema patients. Consider viewing the 3.5-hour video “Physician Intensive: LE Management for the Practicing Physician” available from NLN for $45.00 + sh duringlunch breaks.
13) The Gold Standard of Treatment for Lymphedema outlined in 3) above has been recommended by the American Cancer Society's Lymphedema Workgroup (1997-8), the International Society of Lymphology (1995, 1998, 2003), the National Lymphedema Network (2006), the National Cancer Institute (2004), etc.
14) Emphasize that Diuretics should not be used long-term to treat Lymphedema, however if the patient has another condition that requires diuretics (CHF or malignant hypertension, to name two) that condition would be a priority and the diuretics should be prescribed.
15) Encourage patients to exercise as tolerated (see 3)c) above)and get a well balanced diet, avoiding caffeine and salt as much as possible. 16) Learn about the differential diagnostic tests that can be used to diagnose Lymphedema.
17) Emphasis the role fibrotic patches play in the disease; x-rays, ultrasounds and doppler studies may not be accurate.
18) Need for IV antibiotics for acute infections, consider a longer than usual course of antibiotics and anti-inflammatories to prevent recurrence, and consider the long-term prophylactic use of antibiotics after the third recurrence of cellulitis [Olszewski].
*Excellent page that is very printer friendly, so you can take it to your doctor: