Lymphedema: What is it?

Lymphedema is a disease process of the lymphatic system where abnormal accumulation of protein and water develop the interstitial tissue spaces of the body.  So in layman’s terms, you get swelling that can be anywhere in the body for example the arm, leg, trunk, face, genitals and so forth.  Lymphedema is different from edema which is basically general swelling.    Edema is accumulation of water in the tissues where as lymphedema has more than just water.  It has water, proteins, long chain fatty acids and cellular components as well.  With lymphedema, you have a mechanical insufficiency of the lymphatic system. With just general edema, your lymphatic system is intact.

There is primary lymphedema and secondary lymphedema.  Primary lymphedema is when there is congenital or hereditary malformation of the lymphatic system.  This may include the lymph nodes being too small or too large, absent lymph nodes, or fibrotic lymph nodes.   The actual development of lymphedema, when it is primary, can occur anytime in the course of their lifetime.  I have been treating the lymphedema population for about four years now and I have only treated and seen one primary case with the exception of lipedema in which I had a few cases.  Since I mentioned it, I’ll elaborate on lipedema just a little.  Lipedema is different from lymphedema because with lymphedema, the swelling is usually asymmetrical and involving the hand and foot.  With lipedema, the swelling is symmetrical and does not involve the hand and foot and the foot unless they have developed venous insufficiency which is common with lipedema.   Lipedema is caused by excessive subcutaneous fatty tissue which compresses the lymph collectors which are the vessels that carry the lymphatic fluid to the lymph nodes. This can also compress the venous system therefore increasing the risk of venous insufficiency.  Generally, there is not a treatment for lipedema, unless the person has venous insufficiency or any other secondary issue that is adding to the swelling in which we then call it lipolymphedema.  The majority of the lymphedema population has secondary lymphedema.  With secondary lymphedema there is a cause to the mechanical insufficiency of the lymphatic system.  Some common causes include malignancies, chronic venous insufficiency, trauma, radiation, dissection of lymph nodes, infection, immobility, surgery, and self induced.

There is no cure for lymphedema so once you have it, you have it for life.  Unfortunately, there is also no evidence of any successful surgeries, medications, and miracle diet that will cure lymphedema. The great thing is that lymphedema can be successfully managed with manual lymphatic drainage, complete decongestive therapy and good patient compliance. It is important that you get treatment immediately because are many complications that can occur with untreated lymphedema. If you get immediate treatment, there is a greater chance that your extremity will return back to normal size.  If you hold off on treatment, over time your extremity will continue to increase in size due to over stretching of the skin causing decreased resistance.  Your extremity will never return to original size and this will allow faster return of swelling if you are not compliant with the lymphedema protocol.  Some other complications that can occur are infections, wounds, skin changes and damage, lymphatic cysts, and worsening of the swelling which will add weight to your body thus causing stress on your joints therefore causing orthopedic problems and thus making it difficult to move and walk.

It is very important that you first see your physician if you see any abnormal swelling or swelling that is getting worse. Sometimes sudden abnormal swelling and with pain is a deep vein thrombosis which can be life threatening and will require immediate medical attention.   With lymphedema, generally there is not any pain with your swelling. After you get cleared from your doctor, even if you are not diagnosed with lymphedema, it would be beneficial that you still attend a few sessions with a certified lymphedema therapist, for treatment, patient education and fitting of a compression garment if necessary.   Treatment will vary depending on your medical history.  Treatment may include manual lymphatic drainage, skin care, education, a series of bandaging if necessary, fitting for a compression garment and exercises to improve movement of the lymph fluid.  There are also pneumatic compression pumps that can be used at home to help self manage. This should be used in conjunction with your decongestive therapy (and when your therapist says it’s ok) due to risk of causing skin fibroses and damage of the lymph collectors if used in the first phase of treatment.

In conjunction with proper treatment, good patient compliance is the key to success with management of lymphedema. I have seen this many times in the clinic with non-compliant patients.  They will do great while coming to therapy and we get really great results, fit them for a compression garment and then few months after being discharged from therapy they return to therapy for exacerbation of swelling.  The majority of the time, the exacerbation of swelling is due to not wearing their compression garment consistently and as directed.  Therefore it is very important that you are compliant with the lymphedema protocol and follow it exactly for successful management of your lymphedema.

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Janell Wilson earned her Bachelor’s degree in Biology and minor in Chemistry from Richard Stockton College of NJ in 2002. She then continued her education at Richard Stockton College, to earn her Master’s degree in Physical Therapy in 2005. She has been practicing physical therapy since 2005, in a variety of patient settings including subacute rehab, out-patient sports rehab, pediatrics, and home care.

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