WHAT IS LYMPHOEDEMA?
This is not a scientific presentation, but rather a useful document for patients in need of information. Language used is simplified to increase the understanding of the subject.
You have been diagnosed with lymphoedema and now what! Or perhaps you simply have swollen limbs or a swollen limb and you wonder – Is this what they mean by the dreaded condition, lymphoedema? The truth is, that the term lymphoedema is often misused by physicians, for many conditions presenting with swelling. So, beware! Do not label yourself by jumping to conclusions! No wonder the ICC conference 2017(Amsterdam) called for the term lymphoedema to be replaced by “chronic oedema”!
In theory, lymphoedema is a permanent obstructive disease of the lymphatics. This means the lymphatics are obstructed by (A) Carcinomatous infiltration of the lymph vessels and/or nodes, (B) Radiation damage of lymph vessels and/or nodes or (C) Filariasis, a parasitic roundworm infiltration of the lymphatics. The tissue fluid which causes the swelling is high in proteins because the lymphatics which is supposed to clear excess proteins, are obstructed.
The typical lymphoedema patient could be a post-mastectomy female who required aggressive axillary surgery and/or perhaps radiation of the axilla. It could be a lower limb malignant melanoma patient who required radical surgery and/or radiation and perhaps presents with unilateral swollen leg. To the north, in Africa, lymphatic obstruction is a patient is more likely to be caused by filariasis. But it could simply be that you as patient has the (D) Genetic predisposition to develop lymphatic obstruction which usually happens after puberty but could present at birth or any age therafter. At birth it could be that a patient is born with no or inadequate lymphatics. Others will, out of nowhere, develop a unilateral swollen limb, triggered by an incident such as a long-distance flight, pregnancy or even a bout of flu. These patients typically were born with a genetic abnormality but could cope with the lymphatic load up to the incident.
The important common denominator here is that all of the above patients have permanently damaged lymphatics! No amount of treatment will bring them back to normal. This is important as it impacts the outcome of therapy and therefor prognosis.
Venous insufficiency and Chronic infection/inflammation of various sources could also cause chronic oedema of limbs. The patient typically will have a leg ulcer secondary to venous disease. When treated incorrectly for long periods, not using compression therapy, these legs become woody with “hard” swelling and the skin becomes dry and scaly. This is because the body tries to heal and reorganise tissue in a sick environment where the lymphatic system is dysfunctional. However, these patients respond relatively well to treatment and will also be easier to maintain once oedema is under control, because they do not have the permanent obstruction of the above conditions.
Lymphoedema(Chronic oedema) should not be confused with lipoedema. Lipoedema is a genetic condition where abnormal fat is deposited especially from the waste downwards. Lipoedema patient typically has normal size feet with no swelling. Their enlarged limbs often are sensitive to touch. To complicate things, lipoedematous patients can become oedematous(develop swelling) due to their inactivity.
So why this explanation? Is it relevant? Do we treat lymphoedema and “chronic oedema” differently? The obstructive lymphatic conditions are more difficult to treat and require a more specialized attention. It is definitely worth going to an experienced physician or lymphoedema therapist for a diagnosis and professional treatment plan.