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Coming out of the shadows

Lymphedema is a condition of chronic and progressive swelling that can be inherited or acquired. If it is left untreated it can become disfiguring, potentially disabling and, possibly, even life-threatening.


July 4, 2014
By John Mulligan

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Lymphedema is a condition of chronic and progressive swelling that can be inherited or acquired. If it is left untreated it can become disfiguring, potentially disabling and, possibly, even life-threatening.

Historically – as recently as the 1980s – the general consensus in the North American medical community was that there was nothing that could be done for patients with lymphedema.

The first lymphedema clinic in North America opened in 1987. This clinic primarily used compression pumps to treat patients. In 1989, the first Complex Decongestive Therapy (CDT) clinic opened in the U.S. under the auspices of Dr. Robert Lerner. In 1993, the Vodder School North America was established in Victoria, B.C. 

There are two kinds of lymphedema: primary lymphedema and secondary lymphedema.

Primary lymphedema is inherited. It may be present at birth or it may show up later in infancy, childhood, at puberty or even later, in adulthood. It can be very serious if left untreated for a number of years. With early intervention it can be successfully managed over a lifetime.

Secondary lymphedema is acquired. Some trauma has affected the lymph system, resulting in lymphedema. Often, in North America, the cause will be the surgical removal of lymph nodes for staging the spread of cancer. If the cancer in question is breast cancer, then the lymphedema is referred to as breast cancer-related lymphedema (BCRL). BCRL can range from mild to severe, as many variables affect the development of the swelling.

Lymphedema has four stages:

Stage 0 (latent). This initial stage of lymphedema has no visible signs. Symptoms are a feeling of heaviness or achiness in the affected limb. There is no measurable swelling. This stage may continue for months or years before the edema becomes evident.

Stage 1 (spontaneously reversible). In Stage 1 lymphedema there is evident swelling. It is called spontaneously reversible because the swelling is mild and will reduce during overnight sleep or on elevation.

Stage 2 (spontaneously irreversible). In Stage 2, elevation no longer has any effect on the swelling. The swelling increases and there is evident and palpable tissue thickening. It no longer reduces with overnight rest.

Stage 3 (elephantiasis). Signs of elephantiasis are gross swelling leading to limb deformation, as well as tissue fibrosis that is classified as non-pitting due to the density of the tissue. In this stage we also see skin changes occurring; the skin can develop papillomas (tissue blisters), changes in pigmentation and increased skin folds, to name a few. 

While lymphedema progresses through these stages it is important for patients to know that Stage 3 is rare. Many cases of lymphedema will plateau in Stage 2, and not progress to Stage 3. This is partly due to time. Lymphedema is characterized by a slow onset and it takes a very long time to develop into Stage 3. The incidence of Stage 3 lymphedema seems higher in cases where lymphedema onset was early in life and went untreated well into adulthood.

Lymphedema is a chronic condition. There is no cure at this time. However, the condition does respond very well to treatment and management – if the therapist is diligent and the patient compliant.

The tools for treating lymphedema were developed by Danish massage therapists (Emil and Astrid Vodder) in the 1930s and by German physicians and researchers in the 1960s. These physicians and researchers worked with highly trained European massage therapists and physiotherapists who administered the therapy. This interest in lymphology and applied lymphatic treatments, however, did not occur to the same degree in North America, and still has not had sufficient impact on medical training in North America. 

The gold standard
In Europe, lymphedema treatment was becoming standardized. The Complex Decongestive Physiotherapy system was developed. This combination of therapies, all of which were aimed at decongesting the tissues and promoting lymphatic function, proved to be a very effective treatment with no side-effects. Eventually, researchers and leaders in the field of lymphology recognized and supported CDT as the gold standard of treatment for lymphedema and related conditions.

CDT consists of:

  • manual lymph drainage
  • compression therapy (bandaging and compression garments)
  • decongestive exercise
  • skin care (lymphedema patients are prone to cellulitis)
  • patient education

This multi-faceted approach yields tremendous results; even patients with advanced longstanding lymphedema respond well. The treatment approach is to have an intensive phase of treatment, where the therapist is seen as frequently as possible. The patient is treated with manual lymph drainage and compression bandaging. The bandaging must be worn 23 hours a day, with time off for showering and treatment.

Once the swelling is reduced, the patient may transition into daytime compression garments and nighttime bandaging or nighttime therapeutic garments. This brings the patient into the maintenance phase. In this phase the patient is self-managing the lymphedema through compliance with compression and exercise protocols.

If properly applied, CDT can reduce the swelling of even the largest lymphedema. There are instances when the results seem almost miraculous.

These wonderful results are gained through hard work and compliance with the established standards of treatment and self-management. If the therapist and the patient do everything that is needed, then lymphedema can be reduced and managed. Over time, management of lymphedema becomes easier, simpler and more routine. 

Breast cancer-related lymphedema
Patients who have had lymph nodes removed – to determine if the cancer is spreading or still contained – are at risk of developing lymphedema. The lymph nodes are required to process and purify the lymph fluid that enters into them from the lymph vessels. Removing them, while necessary in fighting cancer, leaves some of the lymph vessels with dead ends, and the fluid they would have carried to the nodes becomes excess fluid that is left in the tissues of the limb.

When patients have had lymph nodes surgically removed for any reason, the transport capacity of the lymph system has been reduced and they are at risk of developing lymphedema for the rest of their lives. Post-surgical swelling should resolve in six to eight weeks, but may take longer in some cases. Do not mistake post-surgical swelling with lymphedema. If patients have concerns about their condition, they should talk to their physicians about it.

The risk of developing lymphedema is not the same for everyone. While there are exceptions to every rule, risk can be related to these factors.

Patients who have had lymph nodes surgically removed are at risk of developing lymphedema.

Patients who have had lymph nodes removed and have received radiation therapy as part of their treatment are at a somewhat elevated risk of developing lymphedema.

Patients who have had lymph nodes removed, received radiation, and then experienced significant weight gain after their surgery and subsequent treatments have an even higher risk of developing lymphedema.

Resources
Find a provincial lymphedema organization by visiting the Lymphedema Depot website where lymphedema organizations and other support networks are listed: www.lymphedemadepot.com. This is a commercial website that maintains these listings as a service to the lymphedema community.

A document called Best Practices in Lymphoedema Management is freely available for download at this site: www.lympho.org/resources.php. The document supports CDT as the standard of treatment for lymphedema and offers established international guidelines for that treatment.


John Mulligan  
  

John Mulligan is a RMT and certified lymphedema therapist and educator. He sits on the Education Working Group of the Canadian Lymphedema Framework and is also co-owner of Lymphedema Depot, a company that offers advanced options in the management of lymphedema.


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