How do we care for the lymphedema patient?

Description: 

Conservative Management of Lymphedema

Main-stream lymphedema care is known as Complete (Complex) Decongestive Therapy (CDT) that is delivered in two phases: i.) Intensive, and ii.) Maintenance.

Intensive phase CDT includes skin/wound care, manual lymphatic drainage (MLD) and 23-hour per day, foam-based, short stretch compression bandaging in parallel with an individualized daily exercise program. This phase of care continues for as long as a patient shows consistent improvement in their clinical condition, typically 4-6 weeks for Stage 2 disease. Patients with Stage 3 disease may require a more prolonged intensive phase of CDT up to months. And, generally, lower extremities require longer Intensive Phase treatment than upper extremities, stage per stage.

A key component of Intensive Phase of CDT is to educate the patient in self-MLD and the placement of compression bandages with and without the assistance of a family member. Adequate patient education is the most important aspect of this treatment approach as long-term adherence is dependent on patient competency achieved during this critical time in their care.

Once a clinical plateau is reached, patients are transitioned to the Maintenance Phase of CDT to include daytime lymphedema compression garments with the recommendation to continue with nighttime, foam-based, short stretch compression bandaging. Eligible patients may be converted to a nighttime compression alternative.

Some lymphedema therapists incorporate pneumatic compression pumps into their treatment plans both during the Intensive Phase and thereafter. There is no consensus of this adjunct to CDT throughout the lymphology medical community at large at this time.

A well conceived CDT lymphedema management program includes three additional components less often discussed: i.) nutrition education and weight control counseling; ii.) psychological counseling; and iii.) social coordination. These aspects of care are critical to the success in managing lymphedema for a lifetime. Nutrition education is essential for optimizing weight control as obesity complicates many aspects of self-MLD and compression. Morbidly obese patients may require more aggressive surgical measures as gastric bypass. Many patients suffer from depression that may complicate intensive phase therapy and adherence to maintenance phase self-MLD and compression strategies. Depression may become so severe as patients develop progressive social isolation that they consider limb amputation and suicide. Psychologic health may be compromised by the stress of unemployment due to physical disability and resulting financial consequences. Patients often lose access to healthcare as insurance coverage for the treatment of lymphedema is only available through an employer-affiliated insurance plan. Further, there may be a limitation to quality medical care as many medical providers no longer accept Medicaid or Medicare for services due to low reimbursement. Management of these negative effectors must be at the forefront of lymphedema management for a successful outcome.

Lastly, patients diagnosed with lymphedema may have difficulty securing coordinated health care by qualified health care providers with experience in lymphology. The reason for this lies in the fact that there is no one medical specialty solely dedicated to the study and care of lymphedema patients. Lymphedema most commonly is diagnosed by care providing surgeons or oncologists, as patients with secondary lymphedema far outnumber primary patients in the United States. Diagnosing physicians commonly refer patients to either Occupational Therapists or Physical Therapists for evaluation and treatment, as CDT is not within their scope of medical practice. Other patients may seek care with a local "massage therapist" without medical training as access to a certified lymphedema therapist in their geographic region may be limited. Thus, care providing therapists who treat this devastating disease do so without the support of an integrated multi-specialty team of health professionals.

One of the primary goals of the National Institute of Lymphology is to promote improved communication between healthcare providers in dedicated Centers of Excellence in Lymphedema Care. Treatment programs are designed and supported by coordinated teams of providers with clinical experience and expertise in the field of lymphology. Patients are seamlessly managed according to integrated treatment care maps, a clinical adaptation that promotes ongoing clinical outcomes research in multiple sites. Care services are specific for etiology (primary vs. secondary lymphedema) and location (upper extremity, lower extremity, trunk, perineum or head/neck). We view this coordination of care combined with a focus on patient education as the essential key for success when patients return home and undertake the challenge of self-lymphedema management.

Surgery

Surgical approaches to the treatment of lymphedema are classified as either i.) debulking or ii.) physiologic. Historically, debulking procedures predominate. The goal of debulking procedures has been to reduce the size and weight of the affected limb to promote function i.e. decreasing the size and weight of a gigantic leg in order to prevent a patient from becoming bed bound. Surgical debulking approaches include dramatic options as the surgical excision of the soft tissues of a limb (skin and fat) to the level of the deep fascia followed by immediate skin grafting (Charles Procedure). Less dramatic approaches include subcutaneous liposuction. This approach has been controversial as it begs discussion of the appropriateness of surgery for lymphedema to preserve/restore function versus surgery solely focused on improved cosmesis.

More novel physiologic surgical approaches have sought to siphon fluid of involved limbs either prematurely into the venous system (lymphovenous bypass) or into non-pathologic lymphatic channels (lymphaticolymphatic bypass). Both approaches require surgeons with specialized post-graduate training in microsurgery. In fact, proponents of lymphaticolymphatic bypass have coined the term "supra-microsurgery" for this area of sub-specialization. Few centers offer these approaches nationally and internationally. Yet, much interest in plastic surgical circles is focused on the possibility of addressing lymphedema in this way.

The most novel of surgical treatment approaches to lymphedema is the Vascularized Lymph Node Transfer (VLNTx). Introduced by two independent centers internationally, this surgical procedure involves the transfer of an autologous lymph node flap along with its peri-nodal fat from an unaffected inguinal region to either the axilla or wrist for the treatment of secondary upper extremity lymphedema.