Patient Education/FAQ's

What is primary lymphedema?

Lymphedema refers to swelling that generally occurs in one of your arms or legs. Sometimes both arms or both legs, as well as other body parts (trunk, head and neck, genitals) may be affected by the swelling.

Lymphedema occurs when your lymph vessels are unable to adequately drain lymph fluid, usually from an arm or leg. Lymphedema can be either primary or secondary. This means it can occur on its own (primary lymphedema), or it can be caused by another disease or condition (secondary lymphedema). Secondary lymphedema is far more common than primary lymphedema.

What is secondary lymphedema?

Secondary lymphedema results from an identifiable damage leading to disruption or obstruction of normally-functioning lymph vessels and/or lymph nodes and may present in the extremities, trunk, abdomen, head and neck and external genitalia. The highest incidence of secondary lymphedema in the United States is observed following surgery and radiation for malignancies, particularly among those individuals affected by breast cancer.

Why is complete decongestive therapy (CDT) considered the gold standard in the treatment of lymphedema, and what are the components of this treatment modality?

Applied correctly by a skilled lymphedema therapist, CDT shows excellent long-term results in both primary and secondary lymphedema. Numerous published studies describe the effectiveness of this non-invasive, safe and reliable treatment approach. In order to reduce the swelling it is necessary to re-route the stagnated lymph fluid – to include excess protein and water molecules – around the blocked area(s) into more centrally located healthy lymph vessels. This goal is achieved by a combination of different treatment modalities, all of which are integral components of CDT, and include Manual Lymph Drainage (MLD), compression therapy,
decongestive and breathing exercises and skin and nail care

What is Manual Lymph Drainage (MLD)?

Manual Lymph Drainage is a gentle manual treatment technique and is based on four basic strokes. The goal of MLD is to stimulate healthy lymph vessels and lymph nodes, which generally are located adjacent to the area of non-functioning or blocked lymphatic drainage, and to re-route the lymph flow around these blocked areas into more centrally located healthy lymph vessels and nodes. This is achieved with specific stretches and manipulations – a common denominator in all MLD strokes – to the skin and those structures located directly beneath the skin, the subcutaneous tissues. The resulting increase in lymphatic activity in the healthy areas creates a “suction effect”, which stimulates the accumulated fluid present in lymphedema to move into an area with normal lymphatic drainage.

What are decongestive and breathing exercises and why are they an important part to manage lymphedema?

The benefits of exercises for those individuals at risk of, or have lymphedema include improved limb flexibility, range of movement, and most importantly increased lymphatic drainage and venous return from the swollen areas, which can result in reduction of limb size and subjective limb symptoms. The positive impact on lymphatic and venous return of muscle and joint activity during exercise, especially while compression garments are worn, and abdominal (diaphragmatic) breathing exercises explain the benefits of a well rounded and tailored exercise regimen for those individuals affected by lymphedema of the extremities.

Here is a link to instructional videos on patient self-care, to include exercises: https://store.acols.com/product-browse.php?category=59

Why is skin care important for those affected by lymphedema?

Patients who already have, or had lymphedema are susceptible to infections of the skin and nails. Prevention is in the patients’ best interest and a great tool to avoid the onset of lymphedema. The skin is the first line of defense against foreign invaders and is usually impermeable to bacteria and other pathogens. However, any defect in the skin such as burns, chafing, dryness, cuticle injury, cracks, cuts, splinters, and insect bites can present an entry site for pathogens or infectious agents and cause infection.

Here is a link to skin care products: https://store.acols.com/product-browse.php?category=51

Which lotions and ointments are suitable for skin care in lymphedema?

Ointments, as well as soaps or other skin cleansers used in lymphedema management, should have good moisturizing qualities, contain no fragrances, be hypo-allergenic and should be in either the neutral or acidic range of the pH scale (around pH 5). To identify possible allergic reactions to skin care products, they should be first tested on healthy skin before the initial application to areas affected by lymphedema. Skin care products often used by lymphedema patients include Eucerin, Lymphoderm, or Lindi Skin products.
Here is a link to skin care products: https://store.acols.com/product-browse.php?category=51

Why is compression therapy in the treatment and management of lymphedema important?

Compression therapy in lymphedema management is provided either via bandages, compression garments or alternative compression devices (depending on the stage of treatment). Compression bandages and garments by themselves will not reduce existing swelling and must therefore not be worn on an untreated, swollen extremity. Individuals affected by lymphedema graduate from padded short-stretch bandages, which are applied by the lymphedema therapist in the intensive phase of CDT to elastic compression garments only when the affected extremity is decongested. To assist in the movement of fluids back to the heart, a pressure gradient between the lower (higher pressure) and the upper part (lower pressure) of the extremity is provided with bandages and garments. Even after successful treatment, the body part affected by lymphedema is at permanent risk for re-accumulation of fluid and most individuals affected by lymphedema are aware of the fact that this condition requires life-long care. Without the benefits of external compression successful long-term management of lymphedema would be very difficult and in most cases impossible.

Link to compression garments: https://store.acols.com/product-browse.php?category=54

Why is it important to wear compression garments?

Compression therapy applied by padded short-stretch bandages, compression garments, or alternative materials, such as adjustable compression devices, is an integral part of lymphedema management. The goal of compression therapy is to maintain and improve the reduction of the swelling achieved during lymphedema treatments.

Link to compression garments: https://store.acols.com/product-browse.php?category=54

What role do short-stretch compression bandages play in the treatment and management of lymphedema?

Compression bandages are used during the decongestive (intensive) phase of CDT. In this sequence of the treatment the volume of the affected limb changes almost on a daily basis, and it is necessary that external compression adapts to these changes. Bandages are much better suited for this task than compression garments (sleeves, stockings), which would have to be re-fitted constantly. Garments are used in the second phase of CDT, when the limb is decongested and volume changes are minimal.

Here is a link to prepackaged bandaging kits for the upper and lower extremities: https://store.acols.com/product-browse.php?category=46

What role do compression garments play in the treatment and management of lymphedema?

The external support provided by compression garments are an essential component of lymphedema management.  Without the benefits of compression therapy, the lymphatic fluid removed by successful treatments would re-accumulate, and long-term management of lymphedema would be impossible.

Link to compression garments: https://store.acols.com/product-browse.php?category=54

What is the difference between ready-made (off-the-shelf) compression garments and custom-made garments?

Selecting an appropriate compression garment is a challenging task, and many important factors, such as mobility and activity level, age, coverage area, general shape of the limb/body part, compression class, material, appearance, cost, skin sensitivity/integrity, possible presence of arterial diseases and donning/doffing issues need to be considered. Some of these factors play a major role in the process to determine if a custom-made or ready-made compression garment would be the better choice for the individual.

Link to compression garments: https://store.acols.com/product-browse.php?category=54

Why do some patients need a custom-made compression garment?

Although ready-made garments are available in a wide variety of sizes from most manufacturers, they are generally made for a limb of average proportion and length. Although some ready-made garments allow for an extra-wide calf/elbow and thigh/upper arm, a patient with a distorted or disproportionate limb will generally require a custom-made garment. Even if the individual circumferential measurements fall within the range of a specific ready-made garment size, some patients may have a disproportionate large calf, with measurements at the top end of the range and a relatively thin ankle with measurements on the low end of the range. The result would be a looser fit around the ankle area, which could result in a “ballooning” effect with fluid accumulating in the ankle area.

Can I order custom-made compression garments from you?

Yes, your therapist needs to supply us with your measurements. Measurement forms can be supplied to your therapist by calling us at 800-863-5935

What are compression classes?

The level of compression within the different classes is determined by the value of pressure the garments produce on the skin; these pressure values are measured in units of millimeters of mercury (mmHg). For a compression garment to work effectively, the pressure needs to gradually decrease from the most distant part of an extremity (ankle, wrist) to the nearest part (shoulder, hip). This gradient is necessary to avoid tourniquet effects and subsequent obstruction of lymph flow.

Most manufacturers in the United States use the following pressure values within the compression classes:

Compression class 1:    20-30 mmHg

Compression class 2:    30-40 mmHg

Compression class 3:    40-50 mmHg

Compression class 4:    over 60 mmHg

How do I choose the correct compression class, size and color and for my compression garment on your site?

Compression class:  The level of compression within the different classes is determined by the value of pressure the garments produce on the skin. The correct class of compression is determined by your therapist and/or physician. Typically, compression classes I and II are suitable for lymphedema of the arm, classes I-III (and IV for custom garments) are suitable for the leg. The compression class can be chosen in the drop down menu attached to each of the products

Size: There is a sizing chart attached to each of the ready-made compression products (typically size I – VI), which lets you determine the size of your garment based on the circumferential measurements of your extremity in certain areas (please also refer to the FAQ below on how to take measurements)

Length: Lower extremity garments come in three standard lengths – regular, short and petite, upper extremity garments come in two standard lengths – regular and long. The sizing chart lets you determine the appropriate length, which you can then choose in the drop down menu.

Color: Many compression garments can be ordered in a variety of colors, which you can also choose in the drop down menu.

Here is a link to our compression garments:  https://store.acols.com/product-browse.php?category=54

What is the purpose of silicone borders on compression garments?

Silicone borders are attached to the most proximal (closest to your trunk) part of the compression garment. These borders are skin friendly and prevent slipping and bunching of the compression garment.
Many compression garments can be ordered with silicone borders, which you can also choose in the drop down menu.

Here is a link to our compression garments:  https://store.acols.com/product-browse.php?category=54

How are short-stretch bandages washed?

Bandages can be hand or machine washed.  Compression bandages (and compression garments – see below) used in the management of  lymphedema should be properly washed on a regular basis, so  skin cells and oils won’t become trapped in the fibers of the  bandages and damage the integrity of the textile. Compression bandages may be machine or hand washed; machine wash is generally the preferred method. Once the bandages go through the spin cycle they are easy to hang and will dry much faster. Daily washing is recommended, especially if lotions or creams are being used. If the bandages are machine washed it is recommended to place the unrolled bandages in a mesh laundry bag in order to protect the fabric during the washing cycle (the gentle cycle should be utilized).

Bandages are best washed in warm water (between 108 – 140^oF); if the bandages are very dirty, they may be boil-washed up to 203^oF.

How are compression garments washed?

Sleeves and stockings are generally worn from first thing in the morning until night time, and although compression stockings are constructed of strong elastic and durable materials, they stretch out after about twelve hours of wearing. This is especially true in regions of increased stretch (knee, elbow) where garments wear out more than in other areas, which may result in pooling of edema fluid in those areas. Daily washing of compression garments helps them to restore and retain their elastic properties as well as removes perspiration, oils, dirt, bacteria and dead skin that accumulate inside the garment from normal wear. Frequent washing does not harm compression garments if done properly. However, the garments can be damaged easily, and its compressive qualities may be lost with even one tough rinse cycle, the wrong dryer setting or using the wrong cleaning agents.

How are measurements for compression sleeves taken?

Sizing for medical compression sleeves is based on the circumferences at specific points and the length of the arm. Measurements are taken with a tape measure, which should be applied in a straight fashion; a twisted or crooked tape measure will result in inaccurate measurements. It is recommended to mark the arm with a non-permanent, non-toxic marker at each circumference measurement made. The length measurement is taken along the front the arm between the respective circumference points. The individual measurements are then compared with the sizing chart of the manufacturer of choice to determine size and length of the compression sleeve.

Link to compression garments: https://store.acols.com/product-browse.php?category=54

How are measurements for compression stockings and pantyhose taken?

While the sizes on some light support stockings are determined by shoe size or height and weight, the sizes on most compression stockings are determined using a few simple measurements.

Sizing for medical compression stockings is based on the circumferences at specific points and the length of the leg. Measurements are taken with a tape measure, which should be applied straight; a twisted or crooked tape measure will result in inaccurate measurements.

It is recommended to mark the leg with a non-permanent, non-toxic marker at each circumferential measurement made. The length measurement is then taken even with the floor, along the leg, up to the respective circumference point. The individual measurements should be written down on a notepad and compared with the sizing chart of the manufacturer of choice to determine garment size and length.

If the affected leg is unusually shaped, the positions of the circumferential and length measuring points should be taken on the unaffected leg first. This technique helps to identify the position of these points on the affected leg.

What are “compression alternatives” for lymphedema?

In addition to traditional compression garments and bandages, there are a number of compression devices and products available. These products are used for nighttime compression instead of padded short-stretch bandages or for those cases when traditional compression can’t be used. Most of these products offer Velcro closing systems, which can be easily adjusted by the patient.

When is a swelling considered edema, and when is it lymphedema?

While the initial causes for the formation of swelling in the tissues are different, all involve the accumulation of fluid in the soft tissues of the skin due to an insufficiency of the lymphatic system.
Edema: Rather than a disease in itself, edema is a symptom that can be caused by a number of conditions, including congestive heart failure (CHF), chronic venous insufficiency (CVI), Immobility (prolonged standing or sitting, paralysis), pregnancy, or pressure from tight jewelry, tight bandages or compression garments.
Lymphedema:  Lymphedema results from the inability of the lymphatic system to perform one of its basic functions, the removal of water and protein from the tissues of a certain portion of the body. This insufficiency can be caused by developmental abnormalities of the lymphatic system (primary lymphedema), or damage to the lymphatic system such as the removal or radiation of lymph nodes in cancer surgery, or infection of the lymphatic system (secondary lymphedema).

What are the differences between lipedema and lymphedema?

Lipedema is a chronically progressive, symmetrical accumulation of fat in the subcutaneous tissue occurring almost exclusively in women. Primarily the lower extremities are affected, but lipedema may occur in combination with the upper extremities as well. Lipedema is characterized by symmetric enlargement of the limbs, combined with tenderness and easy bruising.
Lymphedema is caused by developmental abnormalities of the lymphatic system (primary lymphedema), or damage to the lymphatic system such as the removal or radiation of lymph nodes in cancer surgery, or infection of the lymphatic system (secondary lymphedema). Lymphedema can present in the extremities, head and neck, trunk, or external genitalia.

What is Chronic Venous Insufficiency (CVI)?

Chronic venous insufficiency develops most commonly as a result of blot clots in the deeper veins of the legs. This condition, known as deep venous thrombosis (DVT), results in changes in the fluid dynamics in the veins and causes the pressure in the veins to increase and the system of valves to become insufficient. The problems associated with CVI do not disappear without treatment and the complexity of treatment increases as the disease progresses. Untreated CVI can lead to serious complications, to include lymphedema, and early diagnosis and treatment is of utmost importance.

Why infections are frequent in a body part affected by lymphedema and how are they treated?

There are numerous reasons why patients with lymphedema are at an increased risk for infections. The skin in lymphedema tends to be dry and scaly, causing a disruption of the protective acid layer, or if deepened skin folds are present, moisture collecting in these folds may create a breeding ground for bacteria.

Other than appropriate treatment for lymphedema, what can I do to avoid increased swelling or infection in my affected body part?

Certain activities may trigger the onset of lymphedema, or may exacerbate the symptoms of existing lymphedema. Individuals affected by lymphedema and those at risk for developing it (everyone who has undergone lymph node excision and/or radiation treatments) should perform appropriate skin care, avoid any tight clothing or jewelry, make sure the compression garment and compression class are the right size, just to name a few of the necessary precautions.

What is the difference between daytime and night compression?

Many patients affected by lymphedema benefit from nighttime compression, especially if the swelling tends to increase at night, the swelling tends to fluctuate, or if you have persistent skin thickening associated with your swelling. Most compression garments worn during the day are not appropriate to wear at night when you sleep. The amount of compression needed to overcome gravitational forces during the day would be too high at nighttime and could cause a tourniquet effect; in addition, compression sleeves and garments are prone to slipping at night. Nighttime compression can be applied by padded short-stretch bandages, or alternative non-elastic compression materials.
More information:
http://www.breastcancer.org/treatment/lymphedema/treatments/sleeves/types

What are “lymphedema pumps” – can I use these devices to treat my lymphedema?

The use of intermittent pneumatic compression (IPC) in the treatment of lymphedema is neither accepted as a replacement nor component of complete decongestive therapy (CDT), the accepted gold standard of lymphedema treatment. However, recent studies suggest that there is a potential place for newer generation IPC’s as a beneficial adjunct treatment to effectively control lymphedema, specifically for individuals affected by chronic lymphedema with very limited or no access to medical care, or in those cases when physical limitations of the individual may result in challenges controlling the lymphedema independently in the self-administered maintenance phase directly after CDT treatments.

How do “lymphedema pumps” work?

Pumps, also known as intermittent pneumatic compression devices (IPCs), are composed of an inflatable garment consisting of multiple pressure compartments that wraps around the arm or leg, and an electrical pneumatic pump that fills the garment with compressed air. The garment is intermittently inflated and deflated with cycle times and pressures that vary between devices. It is important to point out that there are a number of contraindications for the use of these devices.

I plan to travel – are there any precautions I should consider for my lymphedema?

While traveling with lymphedema does have some drawbacks and requires more planning, it should not stop you from taking a trip. However, getting to your destination may require hours of sitting, which causes a considerable slow down in the venous and lymphatic circulation, and fluid to pool in the extremities. In order to avoid the onset of swelling and to prevent the worsening of pre-existing lymphedema, it is recommended to wear a compression garment during travel. In some cases it may even be necessary to apply additional bandage(s) on top of a compression garment.  Compression increases tissue pressure and considerably aids in the prevention of fluid accumulation in the tissues.

Are there any surgical procedures available for the treatment of lymphedema?

Various surgical procedures for the treatment of lymphedema have been practiced for over a century and advancements in medical technologies have led to increased discussion of the role surgical treatment as an alternative or additional treatment option for a select group of patients affected by lymphedema. Recent research indicates that the surgical approach to treat lymphedema has beneficial effects for some patients; however, there is a broad consensus that non-surgical management of lymphedema remains the first line of standard care and that surgical procedures do not eliminate the need of complete decongestive therapy pre- as well as post-operatively, and should act only as an adjunct to conservative treatment protocols.
Most common surgical procedures are:
Liposuction, or suction assisted protein lipectomy

Is there a special diet for lymphedema?

An accepted nutritional approach in the management of lymphedema is to follow a balanced diet, which in addition to physical activity and exercises promotes weight loss. Excessive weight contributes to greater demands on the lymphatic systems ability to drain fluid from the tissues; weight control therefore positively affects lymphedema.
More information:

Can I apply for disability because of my lymphedema?

Individuals with severely disabling lymphedema may be able to qualify for benefits if they can meet the blue book criteria under a separate listing.

How does self-manual lymph drainage work and why is it important?

Complete decongestive therapy (CDT) is performed in two phases; in the first phase treatments are administered by trained lymphedema therapists on a daily basis until the affected body part is decongested. The duration of the intensive phase varies with the severity of the condition and averages two-three weeks for patients with lymphedema. However, in extreme cases the decongestive phase may last longer and may have to be repeated several times. Phase two is an ongoing and individualized part of CDT, in which the patient assumes responsibility for maintaining and improving the treatment results achieved in the intensive phase (phase one). During the intensive phase patients are instructed by the therapist in the individual components of self-management, which include self-manual lymph drainage (self MLD, or simple MLD).

Here is a link to instructional videos on patient self-care, to include exercises: https://store.acols.com/product-browse.php?category=59

How do I find a certified lymphedema therapist in my area?

Complete Decongestive Therapy (CDT) is performed by certified lymphedema therapists. Several schools in the United States offer specialized training and certification to physical therapists, occupational therapists, physicians, chiropractors, nurses, or massage therapists.
Therapists attending these courses receive a minimum of 135 hours of specific lymphedema training, which consists of one third class room lecture and two thirds of lab instruction in order to learn the necessary skills to effectively treat lymphedema.

My doctor prescribed diuretics for my lymphedema. Is this medication helpful?

Diuretics promote excess fluid in the body to be excreted. Although diuretics may be beneficial in the short-term, and may be indicated in those cases when lymphedema is associated with systemic conditions (ascites, hydrothorax, protein-loosing enteropathy), they may be harmful and contribute to the worsening of lymphedema-related symptoms if used long-term.