LymphLink Question Corner - Archived from July-Sept 2003
Bonnie B. Lasinski, MA, PT, CI, CLT-LANA, Member NLN Board of Directors
Q: I have been told that I have "localized edema of the left foot, lymphatic in etiology." I have heard about Combined Decongestive Therapy (CDT) and would like to know what it involves. My edema is, for the present, mild and can temporarily be minimized by foot massage. Is my condition likely to worsen and should I investigate CDT at this point?
A: There are several issues that you need to address. First, you want to know whether this is a primary or secondary lymphedema. Do you have a deficient number of lymphatic vessels/nodes or is there an obstruction to the flow in your leg lymphatics? Is there involvement of any other part of your body? Is your other foot involved, even slightly?
The first step in answering these and other questions is to have a clinical evaluation by an experienced lymphologist (physician trained in the management of lymphatic system disorders). There is a test that can be done to assess the functional status of your lymphatic system in your extremities - this is called a lymphoscintigram. It is a minimally invasive, nuclear medicine test that involves injecting a small amount of water that is labeled with a radioactive protein that is picked up by the lymphatics. Serial radiographs are then taken over a period of time to track the movement of the tracer from the toes (or fingers if the upper extremities are involved) and up the limbs into the body. Lymph nodal areas and vessels are outlined, and the rate of clearance of the tracer protein gives a good indication of the level of sluggishness or impairment of the lymph system. It can also tell you whether your right leg lymphatics are normal.
Sometimes a limb is clinically "normal" but the lymphatics are impaired in some way, thus making that limb "at risk" of developing a problem later on. This is important for you to know so that you can take the appropriate precautions to reduce your risk of infection and triggering clinical swelling in that leg.
Not every physician or hospital is familiar with lymphangioscintigraphy. If it is not performed and interpreted properly, the results are poor at best. Try to arrange a consultation with an experienced lymphologist. The National Lymphedema Network (NLN) maintains a listing of regional treatment centers and physicians/lymphedema therapists in their Resource Guide, including those who perform this diagnostic test. You also can find this online at: www.lymphnet.org/findTreatment.htm.
Lymphedema, untreated, is a progressive condition. You are wise to be pro-active and seek advice on how to best manage your specific problem. You may not need intensive treatment at this time. Treatment recommendations, including frequency of treatment, lymph drainage pathways, specific exercise programs, recommendations for compression on the involved limbs, etc. vary depending on the individual situation. There is much that you can do at home in terms of good skin care, risk reduction strategies, appropriate exercise, etc. to reduce your risk for complications/worsening of the lymphedema. Educational materials are also available through the NLN.
Q: I am hoping someone can help point me in the right direction. I know I have lymphedema in my right leg and I have been ill for one year (next month). I know there are others who have suffered longer than I, yet this is long enough for me. I have discovered I am in stage 3, which is irreversible, and that really makes me angry. I have been telling doctors for months I know what is wrong and please listen and I have had no luck. What does it take to make them listen? I have an obvious condition that seems to be worsening and cannot stand the lack of energy, the exhaustion, and the pain associated with this condition. I am hoping you can answer a few questions for me, please:
- Can I ever be cured/healed?
- Am I considered disabled?
- Can I ever get my life back?
- Will I ever be able to work again?
- I was a Preschool Teacher, will I be able to be a teacher, being on my feet again?
- Will I ever be able to wear normal shoes, other than Birkenstocks?
- What test do I need to determine if I have lymphedema or not?
- What types of doctors do I need to see?
- How long does the treatment take?
- They have not ruled out diabetes, would that make a difference with my health and the lymphedema?
A: I am sorry to hear that you have been suffering for so long without a diagnosis and treatment plan. First things first: you need to be evaluated by a lymphologist - i.e. a doctor who is trained in the management of lymphatic system disorders. If one is not available in your area (keep in mind that patients often are willing to travel several hours to get a good evaluation), a vascular specialist is usually the person who is consulted, although some of them are not well versed in the lymphatic system. As I mention in question one, above, the NLN has an online Resource Guide with state-by-state listings of treatment centers and therapists. Reference the list, and hopefully you will find someone near you.
It is imperative that you receive the proper diagnosis. If you suspect that you have diabetes, that must be treated as well. You do not say the cause of your lymphedema (surgery, trauma, venous disease, cancer, etc.), or do you suspect that you have primary lymphedema, that is, due to lack of a normal number of vessels/nodes or immaturity of those structures from birth? A good history combined with a clinical exam can usually diagnose lymphedema, whether it is primary or secondary (caused by surgery, trauma, chronic venous disease, obesity, to name a few things).
Lymphedema usually is not painful in and of itself, but can cause pain when the skin and underlying tissues are damaged. When the limb becomes very swollen, it is more prone to injury and becomes heavy. Living with a swollen limb can be very depressing, and that in itself can cause fatigue/lack of energy, etc. The good news is that it is treatable, but there is no cure at the present time.
Yes, you can get your life back, and no, most likely after treatment you will not be disabled. (I have treated many teachers and they are all back to work.) As to the shoe issue, that depends on how much swelling and tissue changes you have in your foot, and how much reduction can be obtained through proper treatment. Treatment of lymphedema involves wearing compression stockings, which do take up room in any shoe, maybe requiring you to take a larger size or width.
The diagnostic test used to diagnose lymphedema when the history and clinical exam are not conclusive is called a lymphoscintigram (see question 1 above). Note that this test must be done properly or the results will not be helpful.
Treatment itself depends on your specific condition. If you indeed have Stage 3 lymphedema, you will probably require at least four weeks of daily treatment, but that is just a guess. No one can predict what you will need until they do a proper evaluation, which includes the status of your other medical conditions, your general fitness, etc.
Take heart! Successful treatment is available. Check the NLN Resource Guide online. Hopefully there is a lymphedema therapist in your area for treatment and guidance, and possibly one who works closely with a knowledgeable physician who also may be able to help you.
Good luck and don't give up! Help is available. Your lymphedema (if that is what you have) can be reduced and managed very well, but it takes effort on your part to perform a daily home program, including skin care and exercise. That is key: daily commitment to your home program. Good luck to you.
Please address questions to: Editor c/o NLN, 116 New Montgomery Street, Suite 235, San Francisco, CA 94105 or e-mail: nln [at] ymphnet.org (email@example.com). Deadlines for submissions (for the following issue) are: Feb 15, May 15, Aug 15, Nov 15.