Compression Bandages in the Treatment of Lymphedema

Judith R. Casley-Smith

Compression garments and compression garments, are probably the most difficult problem we have had in the maintenance and control of lymphoedema before, during and after treatment. These are not yet completely solved. However the situation is a great deal better than it was when we started Complex Physical Therapy (C.P.T., Complex Lymphatic or Lymphedema Therapy - C.L.T.) in Australia, in 1987. They are an absolutely essential adjunct to this treatment.

Bandages are essential during C.P.T., since the limb's size changes rapidly and so the size of the compression 'garment' and the amount of compression must also change rapidly. They are necessary partly because of the destruction of the elastic fibres of the skin in lymphoedema, to maintain the reductions gained by massage in the newly lax tissues, and to reshape the limb - using specially shaped padding. They will also cope (via the addition of special padding) with the variation in limb size from one area to another, e.g. a large bulge to a much more constricted area, which a compression garment cannot control.

In palliative care, bandages (and, particularly, garments) are often contra-indicated, unless they provide relief for the patient.

If the patient is able to bandage themselves after treatment, then they may find that bandaging at night, rather than wearing a compression garment is much more comfortable. It is certainly preferable to wearing a compression garment which becomes too tight to permit sleep. The bandaging may need to be redone during the night. (This increase in size and the aching of a limb at night is due to the lack of movement which causes a lessening of the pumping by the tiny initial lymphatics.)

A bandage at night is also more comfortable than an 'elastic' compression garment because of its low resting pressure (see below); garments have to be made more elastic than bandages simply so that it is possible to get them on. However bandaging in place of wearing a compression garment at night is only preferable if the patient has been properly taught the principles of bandaging and is able to bandage the limb without causing damage.

If a garment is worn at night, it may need to be of a lower compression. At night, if necessary, one can use a garment that is starting to wear out. It is important to keep as much compression as can be tolerated (i.e. as close as possible to that used by day).

Bandaging over the compression garment is also recommended during long aircraft flights. The low cabin pressure (as well as the long time sitting motionless), can cause swelling even in spite of a pressure garment which is normally quite adequate. This is especially important immediately after a course of C.P.T., when the limb is very vulnerable!

Bandaging at night and in aircraft is particularly recommended for patients whose lymphoedema has a hyperplastic component, i.e. with mega-lymphatics in the subcutaneous tissue and other areas. (This hyperplasia is often associated with too few deep collecting lymphatics.) Elevation at night is also recommended for these, and for those with lymphoedema whose limbs are still soft and pitting.

Indeed if a patient's limb reduces overnight without a garment or bandages, then it is not necessary for them to wear one at night. If it increases without these aids, then they must wear one at night. They must also of course wear one during the day.

How to Choose and Apply Correct Pressure Bandages

There is a problem about how elastic bandages should be. Some elasticity is essential if they are to permit movement (of both joints and muscles) and if they are to fit closely around the curves.

On the other hand, if the bandages are too elastic they are useless. As a limb is moved, it presses or relaxes against the bandages and the total tissue pressure will vary; this variation is inversely proportional to the elasticity of the bandages. During walking, the greater the variations in total tissue pressure, the greater is the lymph flow (and, incidentally, the less frequently venous ulcers develop and the more rapidly they disappear). Hence the less elastic bandages are, the greater will be the variations in total tissue pressure, with all their benefits for increased movement of fluid in the interstitial tissue, uptake by the initial lymphatics and transport by the collecting lymphatics.

A compromise must be achieved. Limbs which will be subjected to extensive movements should have much more elastic bandages than those that probably will only be moved to a small extent. The more elastic bandaging will facilitate movements. If the movements are extensive, the tissues will be subjected to a range of total tissue pressures similar to those experienced by more rigidly encased ones subjected to lesser motions. The supporting bandages of a sportsman with a mildly torn ligament should be more elastic than those around the lymphoedematous leg. When the sportsman is relaxing, his bandages should also be much less elastic.

Which bandages to use in the clinic situation or after treatment depend on a number of things. They must be able to maintain the required compression. This means that they must be strong and able to be tightly pulled, and durable.

The principles of bandaging for lymphedema should be carefully followed:

A sleeve or stocking of gauze which can be changed and washed daily should first be put on. Do not cut this to the length of the limb; it needs to be almost double this length so that it will be the right length when stretched sideways, and to allow for shrinkage.

Fingers or toes may need to be bandaged separately at this stage.

Suitable padding should be applied, starting at the distal end of the limb (the foot or hand) and working up the limb towards the trunk. This is to prevent indentations forming from the outer bandaging and to equalise the pressure over the entire limb. It will also prevent chafing and protect any tender areas.

As well, foam padding (of various densities, shapes and formations) is applied to shape the limb, fill hollows, even-out pressure of the outer bandage, and break down fibrotic areas.

Finally, the low-elastic (low-stretch) bandage is applied.

Again one starts at the distal end of the limb and works up. The width of the bandage increases, with the smallest width being used adjacent to the fingers or toes, and gradually widening as bandaging progresses.

A very wide one may be used around the abdomen, to the waist if necessary. This can be achieved by joining bandages together, end-to-end (for ease of application) and also side-to-side to make a wide enough bandage. (Use a zig-zag stitch.) An even gradation of pressure is essential. This must be greater at the fingers or toes and gradually decrease towards the trunk.

There are a number of methods of bandaging, all of which work. The use of an extra outer layer of bandaging to provide extra compression allows a patient to remove just the outer layer at night if it is unendurable. The knee joint should be bandaged in an extended position.

If you have trouble keeping the bandage up, 'Handygauze Cohesive' or 'Surgifix' (tubular elastic net) - Beiersdorf - can be used for a few winds under the last part of the bandage. You should also firmly tape the end of each roll to the previous one.

Bicycle pants (Lycra) also help hold the top bandages in place without putting too much pressure on the thighs. A panty-girdle can provide extra abdominal pressure, but must NOT cut in at the waistline.

Orthopaedic, or adjustable, open-toe shoes are good during treatment. These accommodate the extra bulk during treatment and are available from a number of surgical suppliers.

Care of Bandages

Bandages must be washed frequently. This not only keeps them clean, but helps them to regain their shape and elasticity. They should always be rolled, under tension. Do not attempt to apply unrolled bandages. Always apply bandages so that the roll is uppermost, facing you, and rolling away from your fingers - thereby applying the bandage from underneath the roll. Thus correct tensioning is easier.

Note that the available finger and toe bandages are more elastic than those for the limb. For this reason, do not apply them as tightly, or with as many layers. The tips of the fingers or toes should not turn white! These bandages are applied by wrapping one digit first and then passing the bandage completely around the hand or foot, just proximal to the digits, before commencing to bandage the next one. This prevents 'webbing'. If there is a bulge, e.g. at the upper part of the foot which creates an indentation between this and the toes, a small role of foam may be used to fill the gap. The above bandaging will also give some extra pressure at this point if it is required.

N.B. bandaging should never be applied so tightly that is causes severe aching or pain. Analgesics should never be used just to compensate for this. The patient should get up and walk around or do some arm exercises. If this does not relieve the pain, the bandage MUST be removed and re-applied. Patients may have to put up with a certain amount of discomfort, bulkiness and tightness during treatment, but they must be vocal and complain if pain becomes a problem.

Bandages suitable for Lymphedema

The lymphatics only pump when they are compressed (by muscular contraction, massage, or other form of pressure) against something solid and unyielding; too elastic bandages just give way and do not compress the lymphatics, which hence do not pump.

A bandage with low elasticity (low-stretch) causes a high pressure within the limb when a muscle contracts (the working pressure), thus compressing lymphatics. The resting pressure, however, is low - i.e. there is less pressure when the muscles are relaxed than would be the case with a highly elastic bandage (high-stretch); hence the lymphatics can fill more readily. This is why bandages are more comfortable at night than compression garments (which usually have a higher resting pressure because they are more elastic).

Crêpe or elastic bandages (including Ace) are not suitable. They have a high resting pressure and a low working pressure, which is just opposite to what is needed. They will not only be uncomfortable and keep one awake at night, but will not control the lymphoedema.

Low Stretch - see suppliers (outer bandage)

Arm: 6 cms -> 8 cms -> 10 cms

hand ------------> upper arm

Leg: 8 cms -> 10 cms -> 12 cmsfoot --------------->

thigh or 10 cm - 12 cm foot to thigh

Padding - see suppliers.

Padding under short stretch bandages comes in a variety of widths. Use as appropriate - usually 6 cm, 10 cm and 12-15 cms.

Tubular bandage used under the padding. It comes in a large number of sizes. This can and should be changed and washed daily. Measure the circumference of the largest part of your limb and divide this by 2. Give this to the supplier. They should be able to work out the correct size to send. Some are softer than others; some shrink with washing daily.

Finger bandages - see suppliers.

These are elastic bandages so apply with care (not too tight!). With many of these, use a 5 cm one and fold it in half, lengthways. Reroll the folded bandage before applying. Wash folded and reroll.

Abdominal bandaging

Crepe bandages may be used. They come in a 15 cm width. Even better are two of the 10 cm Comprilan bandages joined edge to edge length-ways (i.e. not end to end!) with a zigzag stitch to maintain elasticity and to avoid overlapping the bandage and making a ridge. This combined bandage may be joined with another similar one (end to end) to achieve the length needed. A suitable panty-girdle which does not exert extra pressure over the thigh bandages may take the place of this.

Adhesive Bandages

Adhesive bandages are suitable for venous disorders with only a mild lymphoedematous adjunct. They are usually taken only to the knee, may be left on for three weeks, but not with significant lymphoedema.

The Order of Bandaging is:

1. Fingers or toes - bandage.

2 .Tubular stocking - over whole of limb.

3. Padding over whole of limb (plus foam padding where necessary).

4. Short stretch- outer bandage - over whole of limb.Use tape (never clips) for joining the end of one bandage to the next.

5. A heavy crepe bandage or joined short stretch bandages, around abdomen - if necessary.

6. Handygauze Cohesive or Surgifix or bicycle pants if you have trouble keeping the bandage up or together at the top.S

uppliers of Bandages are listed elsewhere.S

ome vital points for the maintenance of bandages are listed elsewhere.

This document was last amended on 26 March , 2002.

The Lymphoedema Association of Australia

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COMPRESSION BANDAGING and GARMENTS

The pressure of fluid (hydrostatic pressure) in venous and lymphatic vessels of limbs is greatest distally, and gradually reduces toward the proximal end of the limb. For a compression to be effective it must also apply graduated compression. Only through graduated compression is the potential for a tourniquet effect reduced. This concept applies regardless of the condition being treated.

How Gradient Compression is Achieved:

Compression bandaging compensates for the diminished skin and tissue pressure associated with lymphedema and helps to prevent the limb from refilling with lymph. Bandaging follows every M.L.D.

Objectives:

to reduce the ultrafiltration rate

to prevent the reaccumulation of evacuated lymph fluid

to help break up deposits of accumulated scar and connective tissue

Low Stretch Bandages (extensible but not elastic)

Objectives:

to raise skin and interstitial pressure of the lymphedematous limbto create a high "working pressure" resistance

to keep "resting pressure" low

to improve the efficiency of the muscle and joint pumps

When the treatment is complete, the compression bandaging is replaced with a custom-fitted compression garment to maintain the lymphedema reduction.

Self-bandaging is recommended at night.

Compression Bandages:

A. 15 minutes - 30 minutes

B. Allow additional time if more than one limb or large difficult limbs.

Trinity Lymphedema Center

Lymphedema 2005 - Remembrance

It's Christmas Eve and 2005 has only a week before it passes into history, gone forever. The year has been a very mixed experience for me.

In so many ways, it has been a blessing as I have been able to establish new support groups, filling a void and reaching out to many many more people.

Lymphedema People has continued to grow and expand around the world. We now regularly have around 36,000 to 38,000 visitors per month from around 150 countries. Early in the year we moved to website to a new professional host site and secured the domain names.

This past Fall, I began eleven medical blogs on related disorders. Since they are new, readership is small, but steadily growing.

I have also been active in the Lighthouse Lymphedema Network and in that wonderful group have met new friends and together we are trying to get treatment legislation passed in Georgia.

For me personally, the year has been one of continued struggle with my health. Continued bouts of cellulitis, under going five sessions of chemotherapy for the lymphoma, continuing problems with things like my lungs filling with fluids.

Sometimes, it even becomes a struggle to want to continue to struggle. By the grace of God, life does go on.

It also has been a year of pain as I was so crudely stripped of my innocence about the lymphedema world. I was harshly awakened to the reality that just because one has lymphedema, it does not necessarily a nice person make you. It's sad in many ways, because you would hope a serious illness or disability would deepen your spirit and soften your heart.

The lymphedema "establishment" continues to either ignore me or sometimes act as if they wish I would just go away. So many of the organizations seem to have forgotten the reason they exist and have lost touch with the reality and hearts of those they claim to help.

I am first and foremost a survivor of 53 years of lymphedema and 10 years of lymphoma. To me it's not about the glory of your organization, how much money you can rake in or your image.

It is about the people...the everyday "common" folk who struggle to cope with this dreadful condition, to survive the many complications and frustrations. We are almost a forgotten people even by those who would claim they are helping us.

But, to all those wonderful everyday people...to the many new friends and family I have found, I just want to say "Thank You!!" You are the reason I continue, you bring joy to my life and I am blessed by your presence in my life.

I wish and pray for each of you that 2006 is a better year...a year of rediscovered joy and purpose...a year when treatment and research takes many steps forward. I pray and long for the time when lymphedema, itself exists only in the medical history books.

My Best to Everyone

Lymphedema and Lymphorrhea

Definition of Lymphorrhea?

Lymphorrhea is the light amber colored fluid that drains from open skin areas (wounds) on a lymphodemous limb. It is not normal plasma, but is a protein-rich substance that can lead to serious complications for the lymphedema patient. The composition of lymphorrhea is approximately 1.0=5.5 g/ml of protein.

Causes of Lymphorrhea

The cause of lymphorrhea drainage is any open area or break in the skin of the lymphodemous limb. Any opening, no matter how small will cause this fluid to weep or drain. Insect bites, cuts, abrasions, cracks in the skin from dryness, wounds of any type become a source for leakage of this fluid.

Lymphorrhea Complications

There are two serious complications that arise from lymphorrhea.The fluid is a natural "food-source" for bacteria. The open draining wound becomes what is referred to as an entry foci for bacteria. This leads to cellulitis, lymphangitis or erysipelas.Lymphorrhea is highly caustic to the skin tissue that it come into contact with. Untreated wounds with this drainage can very quickly become large gaping areas that may eventually lead to the need for skin grafts.

For further information on lymphorrhea and wounds associated with lymphedema see our Wounds section.

Lymphorrhea

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Lymphorrhea - What Is It

Lymphorrhea is an escape of lymph from a cut, torn, or burst blood vessel onto the surface of the skin. Lymph is a milky fluid that contains proteins, fats, and white blood cells (which help the body fight off diseases). Blood vessels are tube shaped structures that carry blood to and from the heart. Lymphorrhea is also known as lymphorrhagia. Lymphorrhea comes from the Greek word "lympha" meaning "spring water," and the Greek word "rhoia" meaning "a flow." Put the words together and you have "a flow (of) spring water."

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This article is taken from the Winter 2002 issue of LymphLine

Lymphorrhea

By LSN Trustee and Nursing Advisor, Denise Hardy

What is Lymphorrhea?

Lymphorrhea is the leakage, or weeping, of lymph fluid through the skin surface. Large beads of fluid appear on the skin and trickle from the affected areas.

Causes of Lymphorrhea

May be the result of lacerations, abrasions, or trauma of the altered dry skin of longstanding edema e.g. graze/cut

It may result from the rupture (bursting) of lymphangiomas (described more fully below)

It may also occur in a sudden or acute edema (swelling) where the shiny, taut skin has stretched so rapidly that it splits, forming a leak.

Lymphorrhea - the complications it causes

The skin feels very cold, wet and uncomfortable. The fluid can soak through dressings which may need changing many times a day to cope with the large amounts of leakage The fluid can collect in shoes/slippers… clothing and bed linen can become soaked and require frequent changes

Lymphorrhea will increase the risk of cellulitis - the break in the skin acts as an entry for bacteria. Infection will cause further problems (pain/inflammation/flu-like symptoms and increased amounts of fluid leakage)

If left to leak and dressings are not regularly changed the lymph (being an excellent culture medium) may grow bacteria causing odor and discoloration

Lymphorrhea may cause social difficulties and embarrassment.

Lymphorrhea not uncommonly affects the genital area and may be difficult to distinguish from urinary incontinence.

Treatment of Lymphorrhea

In order to stop the fluid leaking, a series of steps are essential.Your Lymph edema nurse/therapist or other nurse involved in your care should be able to help you with these steps following a full assessment of the cause of the leakage:

The area around the 'leak' needs to be cleaned carefully to ensure the risk of infection is reduced.

An emollient (moisturizing cream/lotion) should be applied to the skin to improve the condition and protect it (by acting as a barrier) against further skin breakdown.

A non-adherent (non sticky), absorbent, (e.g. Allevyn/Cutinova/lyofoam) sterile dressing should be applied to the leaking area to prevent further trauma to the skin - and to absorb the leakage.

Pressure should be applied. For example a limb should be supported with appropriate bandaging e.g. Multi Layer Lymph edema Bandaging (MLLB) with short stretch compression bandages. This normally stops the flow of leakage within 24-48 hours. Bandages may have to be replaced frequently during this period of time to remove wet bandages/ dressings and to prevent further skin breakdown. MLLB should continue until the skin condition has improved enough to wear your stockings/sleeve again.

At rest, the affected limb should be elevated to reduce the effects of gravity.

Once the leakage has stopped, and the skin condition has improved, your usual compression garment should once again be applied. The garment will keep the swelling to a minimum and prevent any further 'leaks' appearing.

Lymphoedema.org

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Stopping Lymphorrhea and Treating the Wound

Treatment of Superficial Wounds on a Lymphodemous Limb I learned a wonderful technique from a wound clinic several years ago. This is excellent for superficial wounds.I use a very simply, but effective ointment. Desitin with zinc,thats right baby diaper ointment.Cover the wound with ointment and place several pieces of square gauze over it. Wrap the affected part of the limb with rolled gauze and then wrap around that with an elastic bandage. Wrap firm but not over tight, using a criss cross method (figure eight).NOTE: This is for superficial wounds only. If the wound does not clear up within a few days, consult your doctor. You must also see your doctor immediately if it is a large wound or injury or if there begins to be inflammation or infection.Sometimes, you may even need to go to a Wound Clinic. I have found them to be wonderful and very helpful.

Lymphedema Wounds

Lymphedema and Exercise

One thing that really bothers me is when I hear of people with lymphedema who give up on any activity of exercise because they have this condition. You have to want more from life than just being a couch potato, exercising only your thumb as you click that TV remote.I envision life like a football game. The doctor may say you can only go to the 10 yard line. But, you must with all endeavor try for that goal. Even if you only really the 50 yard line, you know that you gave it your best shot!

To stay as healthy as you can, exercise is absolutely necessary, this is true for lymphedema people and non-lymphedema people. The body simply was not designed to sit on that back side for decades. I am a very strong proponent of doing as much as you can despite lymphedema. The key is to understand what type and how much exercise you can undertake.

Remember also, the lymphatic system does not have its own pump, like the heart. It moves through action, exercise and activity. Getting on and keeping an exercise activity will help increase that lymph flow.

I am not going to include the usual list of "exercises to avoid list, because, honestly, what exercise you are able to participate in depends on the stage of your lymphedema, other medical conditions,and the advice of your doctor and therapist.

My favorite exercise is swimming. The gentle pressure of the water against the limb acts in many ways like the natural movements of our body that activates the lymphatics. In early stages of lymphedema, swimming can actually decrease the size of your lymphedema limb.

- - -

Cautions and Considerations

Remember, there are only three factors that will affect what type of exercise you will be able to do with lymphedema.

1. Accompanying medical conditions. These include, but are not limited to heart problems, diabetes, pulmonary conditions. You mustcheck with your physician.

2. Stage and type of lymphedema. Obviously those with arm lymphedemawould have a problem with bowling. But those with leg lymphedema and no arm involvement shouldn't. Stage 1 & 2 lymphedema would present no problem with hiking and walking. At stage 3, it is more difficult. So take the type and stage of your lymphedema into consideration.

3. Risk of injury is also a factor. At any stage you should consider the consequences of broken bones, torn ligaments and sprained muscles. These can be a serious complication with lymphedema.

Other points to remember

1. Work with your therapist and physician to design an exercise program that is both safe and effective for you.

2. Your should always wear the appropriate lymphedema garment when undertaking any exercise.

3. Swimming - Hot tubs, pools (especially community pools) and lakes during the summer (in warmer climates any time of the year) present an increased risk for all types of infections because of bacteria. I urge caution there.

- - -

EXERCISES FOR LYMPHEDEMA

Exercises with Stage 1

In this stage you are able to participate in just about any and all exercises. The only ones to be concerned with are high impact ones.

Also, parachuting, hang-gliding and bungee jumping are definitely out (unless you are slightly jaded like I am, there probably is no need to warn about these).

Exercises with Stage 2

Stretch exercises - flexion, extension, abduction, rotation. The all include movements of the arms toward and away from you body, arms across your chest, behind your head and back.Walking, Hiking, JoggingSwimming, Canoeing, RowingBowling, Archery, BicyclingDancing, Sailing, ScubaJiu Jitsu, Karate, JudoSailing, Frisbee, Fencing, Jogging, Skiiing, Shooting

What was that about being limited?

This is only a partial list too.Exercises with Stage 3See the above - yes, even in stage 3 you can participate in all of the above sports. You may just have to modify how much and how long.It wasn't until the I had the lymphomas that greatly complicated my life that I finally had to eliminate those that put a higher amount of strain on my legs.

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SITES WITH ARTICLES RELATING TO EXERCISE AND LYMPHDEMA

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Exercise and Lymphedema Breast Care Site

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Exercise and Lymphedema Friends Families Suffers of Lymphedema

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Challenging the Myth of Exercise-Induced Lymphedema Dr. Susan R. Harris, PhD, PT, School of Rehabilitation Sciences - UBCAbreast in the West

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Exercise, Lymphedema, and the Limb at Risk Lymphedema
Therapy

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Exercise and Breast Cancer / Lymphedema

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Exercises Cancerbacup

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Exercise Lymphoedema Association of Australia

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Light Arm Exercises That Can Help Prevent/Manage Lymphedema

New Compression Stocking for Children with Lymphedema?

A new option for compression in the treatment of lymphedema in
children

Maria Elisa Simões Artíbale1, José Maria Pereira de Godoy,2 Maria de
Fátima Guerreiro Godoy,3 Domingo Marcolino Braile4

1. Physical therapist, Lato Sensu Graduate Course in Lymphovenous
Rehabilitation, Faculdade de Medicina de São José do Rio Preto
(FAMERP), São José do Rio Preto, SP, Brazil.
2. CNPq researcher. Ph.D. Adjunct professor, Service of Vascular
Surgery, FAMERP, São José do Rio Preto, SP, Brazil.
3. Occupational therapist. Professor, Lato Sensu Graduate Course in
Lymphovenous Rehabilitation, FAMERP and Clínica Godoy, São José do
Rio Preto, SP, Brazil.
4. Head of the Graduate Course, FAMERP, São José do Rio Preto, SP,
Brazil.

Correspondence:

José Maria Pereira de Godoy
Rua Floriano Peixoto, 2950
CEP 15010-020 - São José do Rio Preto, SP, Brazil
E-mail: godoyjmp@riopreto.com.br

ABSTRACT

One of the main difficulties found in the treatment of lymphedema in
children is the mechanism of compression that should be used. The
objective of present study was to report an initial experience with
infant gorgurão (cotton-polyester textile) stockings. The
difficulties found in the treatment of infant lymphedema are
described and an alternative method of compression using a gorgurão
stocking is provided.

Key-words: lymphedema, child, treatment.

J Vasc Br 2005;4(3):311-3

The term lymphedema refers to the type of edema which occurs as a
consequence of the abnormal accumulation of liquid and substances in
the tissues. This is a failure of the lymphatic draining system,
associated with the insufficiency of the extralymphatic proteolysis
of the cellular interstitium and mobilization of macromolecules.1

In children, the lymphedema is usually congenital and it may be
associated with other genetic anomalies.2 The treatment must be
started as early as possible, in order to avoid the progression,
which sometimes leads to a status of difficult reversion. The
treatment follows the principles of therapy association, which
involves the lymphatic drainage, bandages and medication therapy to
avoid infections, recommendation for mothers concerning the child's
daily activities, psychological support for the child and relatives.3-
8

One of the great difficulties found in the treatment of the
lymphedema is the stockings and bandages. The objective of present
study is to report an initial experiment with infant gorgurão (cotton-
polyester textile) stockings.

CASE REPORT

We report the case of a child who was referred to the vascular
service, at 18 months of age, with a history of lower limb edema
since birth. The mother reported that the child was referred right
after birth to a health center, with suspicion of renal problems.
However, the complementary examinations did not show any alteration.
At physical examination, a clinical diagnosis of the congenital
lymphedema was performed on both limbs (Figure 1). The treatment was
started, which included the manual lymphatic drainage, adapted to
children (cervical stimulation, compression of the abdomen and
inguinal stimulation), recommendation for hygienic care and
prevention of infections. Due to the distance between the health
center and her house, we proposed an intensive training for the
mother, so that she could perform the therapy at home. This training
lasted for 15 days and a further evaluation was required every 30
days. The mother was trained to perform the treatment at home, but
the child did not show any improvement in the follow-up visit, and
the mother reported not having enough patience for such treatment.
Due to the difficulties related to cares, we chose the adaptation,
confection and continuous use of the gorgurão stockings. This fabric
is made of polyester and cotton and, since it is corded, it presents
a different extensibility, according to the direction of the fibers.
This allows it to work as a low extensibility material, in the
opposite direction of the fibers, and medium elasticity, in the same
direction of the fibers. Therefore, these characteristics and its
resistance allow its adaptation for our needs. The stockings are made
with velcro, which offers a better adjustment, as the limb reduces
its circumference. This material can be found in fabric stores, but
it can present small variations, according to the manufacturer. For 2
consecutive years, this child was monthly followed up by the team,
which included lymphologist, physical therapist, occupational
therapist and psychologist. She presented reduction in the limb
diameter, but had great difficulties concerning the necessary cares.
The intervention of the social assistance service was always
necessary to verify the continuity of the treatment at home and other
needs detected for a better psychomotor and social development of
this child. However, during the months in which the child wore the
stockings, she presented a clinical and perimetric reduction of the
limb (Figures 2 and 3).

Figure 1 - Characteristic lymphedema of the child's foot at initial
assessment.

DISCUSSION

One of the great difficulties in the treatment of the lymphedema in
Brazilian children is the compression mechanism, both with regard to
bandages and stockings. One of the alternatives found by Godoy &
Godoy was the creation of a stocking made of gorgurão for adults,
which was adapted for children. In the present study, this adaptation
was satisfactory concerning functionality. Nevertheless, there were
difficulties regarding the awareness of the evolution of the disease
and the family and patient adherence to the treatment. The habit of
walking bare foot was a major impediment to the adherence. We
suggested that the child should go to school, where the local social
assistant, principal and teachers were informed, by our team, about
the disease, its evolution and the need for treatment, the importance
of wearing the stockings every day to maintain the reductions
achieved and to avoid the increase in the limb. This alternative
proved to be useful to make the child wear the stockings, to
encourage daily care and the psychomotor development and
socialization of this child.

A great advantage of the gorgurão is its cost, besides being easy to
wear and remove the stockings, which gives more liberty to the
patient in all activities.

This new approach, proposed for the treatment of children with
lymphedema, calls the attention to a new reality regarding the
treatment of this disease. The use of the stockings for the treatment
in children who cannot receive an effective outpatient care, either
due to the distance from the health centers or due to the socio-
economic condition, which does not allow the patient to come to the
center to be submitted to the treatment. However, the support from
the relatives is essential, or else the patients will have to rely on
the community, through professionals that can help them, in order to
maintain the therapeutic approach.

CONCLUSION

The adaptation and use of the gorgurão stockings for the treatment of
the lymphedema in children reduce the edema, making the progression
of the lymphedema slower. The effective involvement of the family
and/or community is essential to obtain good outcomes.

Vascular Journal of Brazil (2005)

New clinical and laboratory staging systems to improve management of chronic lymphedema

Abstract

Lymphology Sept 2005

Lee BB, Bergan JJ.

Department of Surgery, Uniformed Services University of the Health Sciences, Bethesda, MD, USA. bblee38@comcast.net

We have developed new clinical (C) and laboratory (L) staging systems to improve the clinical management of chronic lymphedema. These systems were retrospectively assessed in 220 chronic lymphedema patients followed up for 4 years. Clinical evaluation of the treatment response/disease progression was performed at 6 month intervals and laboratory evaluation at a yearly interval except for recurrent sepsis cases. The reliability of C-stage and L-stage for the progression of disease were analyzed separately. The C-staging was based on the subjective and objective findings of local and systemic conditions, while L-staging was based on lymphoscintigraphicfindings. Clinical implementation of this new staging system facilitated interpretation of the progress/deterioration of the clinical response to CDT treatment, and it was found to be a useful guideline for the decision/selection of further surgical treatment. We propose that these two separate staging systems could now become a new guideline for improved management of lymphedema with a better prediction of treatment outcome and decision point for additional medical/surgical therapy. Further clinical implementation and evaluation is necessary to demonstrate clinical usefulness especially to guide surgical therapy and L-staging in followup.

Pub Med

** Editor's Note - as more become available on the new proposed staging systems, I'll make it available to readers **

Hyperbaric Oxygen Therapy for Lymphedema

Bends cure could aid cancer women

By Jane Elliott BB News health reporter

Shirley Fenton had a badly swollen arm Decompression chambers, used to treat deep-sea divers with the bends, could hold the key to relieving a painful side effect of breast cancer. Experts believe lymphoedema - severe swelling in the arm following radiotherapy - could be alleviated by breathing in pure oxygen.

A trial funded by Cancer Research UK is now looking for 63 women to test their theory.

Previous trials have already produced promising results. Five years ago Shirley Fenton, 66, from Buckfastleigh, in Devon, took part in the pilot trial, led by the Royal Marsden Hospital and The Institute of Cancer Research.

Progress

She said: "The swelling in my arm has reduced by 10% and the arm has softened quite a lot. "Before there was no give in it. Now there is no difference to the other side. "I had swollen fingers that I used to call my sausage fingers, but now I can get my rings on."

We were breathing pure oxygen

Shirley Fenton Shirley first had breast cancer when she was a young mother of 34.

She had a lumpectomy and radiotherapy, but her lymph nodes were not removed. Seventeen years later she had another unrelated breast cancer. Again she had a lumpectomy and radiotherapy, but this time surgeons also removed her lymph nodes.

A few years later she started to suffer from a terrible swelling in her arm.

"I did not know what was happening. My arm started to swell up. But I did not let it stop me doing anything and I would still play golf with this enormous arm."

Because Shirley and her contemporaries were the first wave to have their lymph nodes removed, there were few support systems in place - and cancer experts were not as aware as they are today about the symptoms and side effects.

When she was first diagnosed with lymphoedema she was simply given a sleeve, like a stocking for varicose veins, to reduce her swelling.

Later she was told about massage that could help drain the excess fluid.

But she said that because she had the condition for so long, many regarded her as someone whose condition could merely be maintained rather than improved.

Trial

When she heard about the six-week trial in the hyperbaric unit, which helps treat divers suffering from the bends, she agreed to take part.

"We were breathing pure oxygen.

Patients will get 90 minutes of HBO for six weeks.

"And then after 90 minutes we would start to decompress. It was like being in an aeroplane, because your ears pop.

"It was an experience I would not have missed for anything. I found it very enlightening."

The treatment, called hyperbaric oxygen therapy (HBO), will be available in Hull, Plymouth, Gosport and Leytonstone.

Professor John Yarnold, a consultant at the Royal Marsden Hospital, is leading the trial.

He said he hoped to show that HBO treatment could permanently reduce swelling.

This complication has been assumed to be inevitably progressive and irreversible

Professor John Yarnold

"Patients cured of breast cancer by treatments that include radiotherapy to the armpit may be left with a life-long legacy of arm swelling.

"This is thought to be due to narrowing of lymphatic vessels that drain tissue fluid out of the arm, rather in the same way that veins drain blood.

"Narrowing of these channels is caused by scarring (fibrosis) stimulated by the radiotherapy. A very similar syndrome can develop after surgery to the armpit.

"For many decades, this complication has been assumed to be inevitably progressive and irreversible, but our recent research suggests that the condition might be improved by high-pressure oxygen therapy.

"Our current clinical trial aims to test the findings of an earlier pilot study, which reported worthwhile improvements in a proportion of patients who had had radiotherapy up to 30 years ago."

He added: " If the present trial confirms our earlier findings, this will certainly change the way we think about lymphoedema as well as, hopefully, changing the lives of patients living with this condition.

"As part of the trial, we are keen to investigate possible mechanisms by which high-pressure oxygen might improve lymphoedema.

"One of the ideas we are looking into is that high-pressure oxygen may stimulate the growth of new lymphatic channels as well as lead to a reduction in scar tissues surrounding existing lymphatic channels in the armpit."

Volunteers

Two thirds of volunteers recruited to the trial will receive 90 minutes of HBO therapy, five days a week for six weeks.

They will wear a large transparent dome over their heads that supplies pure oxygen through tubes and during this time they will be able to read or talk normally.

The remaining third of volunteers will receive standard care for lymphoedema including bandaging, exercise and massage.

Professor Robert Souhami, at Cancer Research UK, said: "Current therapies for lymphoedema aim to control the symptoms rather than treating the cause.

"There are encouraging signs that hyperbaric oxygen therapy might be an effective treatment and this trial will provide stronger evidence."

Women wishing to check if they are eligible for the study should contact Mrs Lone Gothard, Research Coordinator on 020 8661 3460 or visit the cancer trials database on Cancer Research UK's patient information website.

THIS IS FROM THE BBC

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CIGNA Healthcare Coverage Position Number 53, dated May 15, 2005 on

Hyperbaric Oxygen Therapy for Lymphedema.

"Lymphedema: Approximately 10-38% of all women who have breast-conserving surgery (BCS) or modified radical mastectomy have postsurgical irradiation to the lymph nodes, and 10% of those women who have BCS with irradiation to the lymph nodes develop lymphedema. Hyperbaric oxygen therapy has been proposed as an adjunct treatment to assist in reducing lymphedema. A pilot study of 10 patients was conducted in 2004 by Teas, et al. Results showed a 38% average reduction in hand lymphedema; however, the total limb volume did not change significantly from baseline measurements after 20 HBO treatments, and vascular endothelial growth factor-C (VEGF-C) levels began to increase. This change may suggest that HBO treatment stimulates the production of this growth factor. The researchers concluded that additional studies with a larger population of patients are needed to document the effects of HBO on lymphedema.

Ref: Teas J, Cunningham JE, Cone L, Jansen K, Raghavan SK, Nitcheva DK, et al. Can hyperbaric oxygen therapy reduce breast cancer treatment-related lymphedema? A pilot study. J Women's Health. 2004;13(9):1008-18.

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Journal of Emerging Medical Technologies

May 23, 2005

Those decompression chambers used for divers with "the bends" are finding another use. Researchers in the UK are treating lymphedema with high-pressure oxygen. Lymphedema can result when irradiated lymph nodes block the return of lymph from the extremities; patients are left with debilitating swollen arms or legs. The BBC reports on Dr. John Yarnold's new clinical trial:

"Patients cured of breast cancer by treatments that include radiotherapy to the armpit may be left with a life-long legacy of arm swelling. "This is thought to be due to narrowing of lymphatic vessels that drain tissue fluid out of the arm, rather in the same way that veins drain blood...

"For many decades, this complication has been assumed to be inevitably progressive and irreversible, but our recent research suggests that the condition might be improved by high-pressure oxygen therapy...

"One of the ideas we are looking into is that high-pressure oxygen may stimulate the growth of new lymphatic channels as well as lead to a reduction in scar tissues surrounding existing lymphatic channels in the armpit." (Abtract from Pub Med)Non-randomised phase II trial of hyperbaric oxygen therapy in patients with chronic arm lymphoedema and tissue fibrosis after radiotherapy for early breast cancer. Gothard L, Stanton A, MacLaren J, Lawrence D, Hall E, Mortimer P, Parkin E, Pritchard J, Risdall J, Sawyer R, Woods M, Yarnold J. Department of Radiotherapy, Royal Marsden NHS Trust, Sutton, Surrey SM2 5PT, UK.

Abstract from Pub Med

BACKGROUND: Radiation-induced arm lymphoedema is a common and distressing complication of curative treatment for early breast cancer. Hyperbaric oxygen (HBO(2)) therapy promotes healing in bone rendered ischaemic by radiotherapy, and may help some soft-tissue injuries too, but is untested in arm lymphoedema.

METHODS: Twenty-one eligible research volunteers with a minimum 30% increase in arm volume in the years after axillary/supraclavicular radiotherapy (axillary surgery in 18/21 cases) were treated with HBO(2). The volunteers breathed 100% oxygen at 2.4 ATA for 100 min in a multiplace hyperbaric chamber on 30 occasions over a period of 6 weeks. The volume of the ipsilateral limb, measured opto-electronically by a perometer and expressed as a percentage of contralateral limb volume, was selected as the primary endpoint. A secondary endpoint was local lymph drainage expressed as fractional removal rate of radioisotopic tracer, measured using lymphoscintigraphy.

RESULTS: Three out of 19 evaluable patients experienced >20% reduction in arm volume at 12 months. Six out of 13 evaluable patients experienced a >25% improvement in (99)Tc-nanocolloid clearance rate from the ipsilateral forearm measured by quantitative lymphoscintigraphy at 12 months. Overall, there was a statistically significant, but clinically modest, reduction in ipsilateral arm volume at 12 months follow-up compared with baseline (P = 0.005). The mean percentage reduction in arm volume from baseline at 12 months was 7.51. Moderate or marked lessening of induration in the irradiated breast, pectoral fold and/or supraclavicular fossa was recorded clinically in 8/15 evaluable patients. Twelve out of 19 evaluable patients volunteered that their arms felt softer, and six reported improvements in shoulder mobility at 12 months. No significant improvements were noted in patient self-assessments of quality of life.

CONCLUSION: Interpretation is limited by the absence of a control group. However, measurement of limb volume by perometry is reportedly reliable, and lymphoscintigraphy is assumed to be operator-independent. Taking all data into account, there is sufficient evidence to justify a double-blind randomised controlled trial of hyperbaric oxygen in this group of patients.

Truncal and Breast Lymphedema

Truncal Lymphedema: Risks, Symptoms, and Treatment
by Elizabeth Pennebaker, M.A., M.St., DPhil
Studies have estimated that breast cancer survivors have a 20%-80% chance of ending up with some form of lymphedema, whether it is truncal lymphedema (i.e. lymphedema of the chest, breast and back) or of the arm and/or hand. It is difficult to predict who will get lymphedema and who won’t, but there are some variables that are known to increase the risk. Patients who have had more extensive surgery, more radiation, or greater scarring following diagnostic and treatment procedures are more likely to develop lymphedema than others.
It is crucial to keep in mind that truncal lymphedema can develop at any point – during treatment itself or thirty years later. For more information regarding risks and ways to avoid the onset of lymphedema see the NLN website
Truncal lymphedema can present somewhat differently than lymphedema in the arms and legs, which may make it difficult for therapists or doctors to diagnose. Often pain and tenderness are the first signs, rather than visible swelling (although this may be a symptom too, of course). There may be a sense of fullness in the armpit, back, side and/or breast. Sometimes the affected breast may be larger than it was before breast cancer treatment. Visible indentations from bra straps or seams may be seen on the affected side, but not the other side. Other signs include a thickening of the skin or “pitting” (little pock-mark indentations) on the breast, chest, or back.
The treatment of choice for truncal lymphedema is massage (MLD), followed by the use of compression garments to reduce fluid build-up. It’s important, however, to choose an appropriate compression garment. Many women mistakenly try to use mastectomy or sports bras as compression bras, but these can actually block the drainage of fluid from the torso and make symptoms worse. Moreover, even some compression bras are not appropriate for truncal lymphedema, because they do not provide coverage for all the areas of the torso that can be affected.
In upcoming issues of EW, we’ll explain the importance of compression bras in treating truncal lymphedema, and discuss the features a good compression garment should have. Until then, visit the Bellisse® website
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FAQs: Compression Bras vs. Mastectomy and Sports Bras in the Treatment of Truncal Lymphedema
Q: What’s the difference between a compression bra and a mastectomy bra?
A: Mastectomy bras are designed to hold prostheses securely in place. Some compression bras, including Bellisse’s Compressure Comfort® Bra, are also designed to hold prostheses, but they do much more as well. Compression bras provide compression for patients with post-surgical swelling or truncal lymphedema, which is often the painful retention of lymphatic fluid in the torso (a common side effect of breast cancer treatments). Mastectomy bras are simply not designed to provide compression in all the areas that can be affected by truncal lymphedema, such as high in the armpit and/or on the back. In fact, depending on their design, some mastectomy bras may be contraindicated for lymphedema, because they do not provide therapeutically useful compression, may cut into tender, swollen tissue, and may even block the drainage of lymphatic fluid.
Q: Can’t one get compression from a regular sports bra?
A: Regular “compression” sports bras are designed to flatten the breasts against the chest wall in order to help minimize their movement during exercise. There is no consideration of lymphatic flow or surgical scarring. For women with lymphedema, this kind of compression is inadequate, and may sometimes even exacerbate the problem. (Also, sports bras often do not come in large sizes, so many patients will not be able to use them.)
Q: What features should one look for in a compression bra?
A: A good compression garment will provide compression in all the areas of the torso where lymphatic fluid can build up, including the back and under the arms. If a compression bra does not cover these areas, it may not be appropriate for lymphedema. Compression bras should also avoid chafing the skin and, most importantly, allow drainage of lymphatic fluid from the torso. For this reason, it’s important to avoid any compression garments that have underwires, non-flat seams across the cups, or narrow straps. Finally, look for a compression bra with a front zipper, so that it will be easy for patients with a restricted range of motion to\n use it.
To find out more about the features that are important for successful compression, visit Bellisse Compression Bras
Compression Garments in the Treatment of Truncal Lymphedema: A Conversation with Lymphedema Therapist Lesli Bell, PT-CLT/LANA Q: Why is the use of compression garments so important in the treatment of truncal lymphedema? LESLI —Compression is a standard part of the treatment of lymphedema, and helps to keep lymphatic fluid from building up in the affected quadrant. The fluid build-up in the chest can often be very painful, so a well-designed compression bra can make an enormous difference in patients’ quality of life. (However, a badly designed one can\n make things worse, so choose carefully -- see ",1]Q: What features should one look for in a compression bra?
A good compression garment will provide compression in all the areas of the torso where lymphatic fluid can build up, including the back and under the arms. If a compression bra does not cover these areas, it may not be appropriate for lymphedema. Compression bras should also avoid chafing the skin and, most importantly, allow drainage of lymphatic fluid from the torso. For this reason, it’s important to avoid any compression garments that have underwires, non-flat seams across the cups, or narrow straps. Finally, look for a compression bra with a front zipper, so that it will be easy for patients with a restricted range of motion to use it. To find out more about the features that are important for successful compression, visit Bellisse
Compression Garments in the Treatment of Truncal Lymphedema:
A Conversation with Lymphedema Therapist Lesli Bell, PT-CLT/LANAA:
Q: Why is the use of compression garments so important in the treatment of truncal lymphedema?
LESLI —Compression is a standard part of the treatment of lymphedema, and helps to keep lymphatic fluid from building up in the affected quadrant. The fluid build-up in the chest can often be very painful, so a well-designed compression bra can make an enormous difference in patients’ quality of life. (However, a badly designed one can make things worse, so choose carefully -- see FAQS
Q: What has been your patients’ response to treatment with massage and compression garments?
LESLI —In my experience, once patients get treated with massage or manual lymphatic drainage (MLD), they feel much better. However, it used to be that the only way to keep swelling down after treatment was with bandages – which were hard to put on, uncomfortable, and looked terrible under clothing. Now that a good compression bra is available, my patients have a vastly improved quality of life. Some women I’ve seen couldn’t leave the house, couldn’t be touched, could hardly get through the day. After they were treated with massage (MLD) and fitted with the Compressure Comfort® Bra, they stopped suffering and got their lives back again.
Q: When should patients wear compression bras?
LESLI —From the first hint of any symptoms of truncal lymphedema onwards. Symptoms include pain and tenderness, a sense of fullness in the armpit, back, side, or breast, visible indentations or “pitting” in the skin, or one breast being larger than the other or different than it was before surgery. (You should consult your health care provider immediately if you see any of these symptoms.) Some therapists also recommend that the Compressure Comfort® Bra be worn preventatively. For instance, some patients choose to wear it during exercise, or while flying, when changes in cabin pressure may make the development of truncal lymphedema more likely. In addition, many patients find that compression bras are useful for supporting swollen tissues, protecting skin, and holding dressings in place during recovery from surgery or radiation treatments. Compression bras are even being used for women who have had open-heart surgery, or who have diabetes or osteoporosis. Now that most insurance companies cover compression bras, we are finding that they have a wide range of applications.
Bellisse
How Much Compression Is Needed to Effectively Manage Truncal Lymphedema?
by Lesli Bell, PT, CLT-LANA
There have been no scientific studies about the appropriate amount of compression for truncal lymphedema, because no measurement system has been developed to assess the amount and quality of swelling in the trunk. All we can do right now is rely on practitioners’ ability to palpate and\n assess swelling and treatment needs for the trunk.
Treatment considerations for truncal lymphedema are very different than those for arm lymphedema. For example, the tissue around the chest wall is much less bulky and has much less muscle than the arm. The breasts themselves have no muscles at all to pump out fluid. Therefore the amount of compression needed on the breasts and trunk is far less than in the arm.
Another problem with determining the appropriate amount of compression for truncal edema is that swelling, pressure, and discomfort frequently fluctuate with heat, activity, and even with flying. The level of edema in the trunk is very sensitive to pressure changes, which is why adjustability (especially in milder cases) is a much needed - and much appreciated - element in truncal compression.
With no absolute measurements, many practitioners around the country are using patient comfort as an indication of appropriate compression for the\n trunk, and are getting excellent symptom amelioration and edema reduction. Practitioners tell of patients reducing as much as two cup sizes within a week or so while they are in active treatment that incorporates an appropriate compression garment. Patients are then able to maintain this improvement with independent treatment. "
Sometimes the best guide is the patient’s mobility or degree of pain relief. Patients can feel when their movements are less restricted, and when linear pressure around the trunk has been reduced. This is very important, especially when we are trying to clear the UE through the affected chest wall, because it provides improved drainage for alternate lymphatic pathways.
An appropriate compression garment provides for all of these variables for the patient with truncal edema. Avoid using mastectomy and sports bras, which are not designed for truncal lymphedema. Instead, choose a bra that provides full coverage for the torso (i.e. a long silhouette on both front and back, with coverage high under the arms), and that has wide, padded straps for patient comfort, and a front zipper for easy donning. (For more information on appropriate compression for truncal lymphedema visitBellisse
Bellisse
Breast Lymphedema
A Conversation With Lymphedema Therapist Lesli Bell , PT-LANA
by Elizabeth Pennebaker, M.A., M.St., D.Phil.
Q. How can you tell if a patient has breast lymphedema?
LESLI — Well, the symptoms are consistent with chronic edema and lymphedema, but the problem is that there is not yet an objective measurement for truncal lymphedema (that is, lymphedema of the breast, chest, and/or back). As a result, many less experienced practitioners often miss it. Therapists usually have to go by feel, because the visual signs are subtle, and often may be attributed to post-radiation effects. Also, because breast lymphedema is usually quite painful (in contrast to other edemas) it can often be misdiagnosed as an infection or, in extreme cases, inflammatory breast cancer. But if you don’t diagnose and control lymphedema, it can lead to exactly that – an infection. So detection and treatment are crucial.
Q. If you can't measure breast lymphedema, how can you be sure you’re treating it appropriately?
LESLI — Using Manual Lymphatic Drainage and compression garments with arm edema is well documented in the literature. This approach improves the control of the problem dramatically. It makes sense that if you have an edema problem somewhere else, the same treatment would help. Anecdotally, we know that massage and compression frequently decrease patients’ discomfort in the chest and breast area. So how do we know how much massage and compression is therapeutic? We go by comfort. Believe me, our patients tell us very clearly that they are much more comfortable after treatment!
Q. What has been your patients’ response to treatment with massage and compression garments?
LESLI —In my experience, once patients get treated with massage, they feel much better. However, it used to be that the only way to keep swelling down after treatment was with bandages – which were hard to put on, uncomfortable, and looked terrible under clothing. Now that a compression bra is available, my patients have a vastly improved quality of life. Some women I’ve seen couldn’t leave the house, couldn’t be touched, could hardly get through the day. After they were treated with massage and fitted with a compression bra, they stopped suffering and got their lives back again.
Lymphedema Success Stories
by Elizabeth Pennebaker, M.A., M.St., D.Phil.
While lymphedema of the arms and legs following cancer treatment is well-documented and extensively treated, truncal lymphedema (lymphedema of the chest, breast and/or back) is far less known – even though some studies show that up to 80% of women may develop truncal lymphedema after certain breast cancer diagnosis and treatment procedures. Because truncal lymphedema is not as widely acknowledged as lymphedema of the extremities, physical therapist Lesli Bell, PT-LANA, found that there were no appropriate compression garments available for the chest and breast area. Frustrated by seeing her patients suffer needlessly, Bell, together with Jogbra® inventor Lisa Lindahl, designed a compression bra women with truncal lymphedema. Bell and Lindahl then started to travel around the country to clinics and conferences, helping to educate the medical community about truncal lymphedema.
Bell and Lindahl take every opportunity of alerting medical professionals to the prevalence of the problem, and to the extreme pain, suffering, and disability it can cause. Lesli also gives other therapists tips on diagnosing truncal lymphedema, something that is often very difficult to do because swelling in the trunk is not as obvious as in the extremities – and because truncal lymphedema can mimic many other conditions, such as post-radiation soreness, infections, or even inflammatory breast cancer.
Bell and Lindahl hope that their efforts have contributed to the medical community’s increasing acknowledgement of truncal lymphedema as a significant problem for breast cancer survivors. However, they also like to emphasize the positive by talking about the freedom and high quality of life that can come from appropriate treatment and compression. For example, they love to tell the story about the woman they met in New York whose breasts had been too swollen and painful for her to ride her beloved horses, and who, after being fitted for a compression bra, felt so good that she headed straight for the stable. Because lymphedema can be brought on or exacerbated by flying, Bell and Lindahl also count as a great success story the woman who was finally able to take her dream vacation – including a 24-hour flight to Australia! – after purchasing a bra that delivered appropriate truncal compression.
Insurance Covers the Right Compression Garment for Truncal Lymphedema, So Don’t Settle for Less!
Women wear all kinds of shoes to the grocery store, from high-tech running shoes to strappy high heels. But when a woman goes out for a run, she knows she needs to leave the heels at home and choose the running shoes that will support her feet properly.
The same principle applies to choosing the right compression garment for truncal lymphedema. Any woman who has undergone breast cancer treatment is at risk for truncal lymphedema, which is the painful buildup of fluid in the chest, breast and/or back. The wearing of compression garments is a standard part of treatment for lymphedema.
Sometimes women at risk for truncal lymphedema are encouraged to wear sports or mastectomy bras because they may be less expensive than a real compression garment. However, while sports bras and some post-surgical bras may offer a bit of compression, they are like high heels – they may function in some situations, but they are just not designed for the specific needs of truncal lymphedema patients. Design features that are fine for athletes or mastectomy patients – underwires, narrow shoulder straps, wide armholes, traditional “bra” silhouettes – can be painful or even harmful to women with lymphedema, because they may dig into swollen skin and block the drainage of lymphatic fluid.
But there’s good news: the only bra specially designed for truncal lymphedema is also suitable for athletic activity, and contains pockets that can hold prostheses for mastectomy patients. This means that a woman with (or at risk for) truncal lymphedema might actually save money by buying a single garment instead of multiple ones! Or she may choose to add this versatile garment to her wardrobe of wearable treatment options.
And there’s even better news: most private insurance companies are reimbursing for the compression bra, which means women can base their choice of compression garment on their medical need– not just on price.
Invest in the right compression bra the first time! You’ll be glad you did!
Breast Cancer’s “Dirty Little Secret”
by Elizabeth Pennebaker, M.A., M.St., D.Phil.
“Suzanne’s” breast cancer was in remission – but her breasts were still so painful that she couldn’t bear to have her husband touch her. She came to the clinic of physical therapist Lesli Bell almost in tears, telling Bell that her pain was like a “migraine in her chest”.
Suzanne was one of a large and growing number of breast cancer survivors with truncal lymphedema (lymphedema of the breast, chest, and/or back). Although some studies suggest that up to 80% of women may develop truncal lymphedema after certain breast cancer diagnosis and treatment procedures, the condition remains largely\n unacknowledged in the medical community – a kind of “dirty secret” behind the advances in breast cancer treatment. Like the better-known lymphedema of the extremities, truncal lymphedema occurs when protein-rich lymphatic fluid accumulates in tissues, causing swelling, tenderness, and infection.
However, unlike most lymphedema of the limbs, truncal lymphedema can be agonizingly painful. Bell treated Suzanne with Complete Decongestive Therapy, a combination of lymph drainage, infection prevention, and self-maintenance techniques. After several treatments, Suzanne experienced a 90% reduction in her symptoms and enjoyed a quality of life she hadn’t had for years.
Now Lesli and Suzanne faced another challenge. A crucial part of Suzanne’s self-care regimen was the use of compression to prevent the re-accumulation of fluid, but there were no compression garments on the market for the trunk and breast area. Lesli ended up having to design and manufacture a\n compression garment herself, which give Suzanne the comfort and freedom she needed to live normally again. "

Gentle Arm Exercise and Deep Breathing on Secondary Arm Lymphedema

The effect of gentle arm exercise and deep breathing on secondary arm lymphedema.

Abstract - Lymphology Sept 2005

Moseley AL, Piller NB, Carati CJ.Department of Surgery & Lymphoedema Assessment Clinic, Flinders University and Medical Centre, Bedford Park, South Australia, Australia.

The aim of this study was to explore the benefits of gentle arm exercise combined with deep breathing for secondary arm lymphedema. 38 women participated in 10 minutes of standardized arm exercise and deep breathing and were measured every 10 minutes for 1 hour, then 24 hours and 1 week post regime. A smaller cohort of 24 women continued the 10 minute exercise regime morning and evening for 1 month, with measurements being repeated at the end of this time. Directly after performing the regime, there was a reduction in arm volume of 52 mls (5.8%), with the reduction being sustained at 30 minutes (50 mls, 5.3%). Even though participants were told not to further do the exercise, at 24 hours the volume reduction was 46 mls (4.3%) and at 1 week, 33 mls (3.5%). At the one month follow-up, the reduction was 101 mls (9.0%). All reductions were statistically significant. Reported arm heaviness and tightness also statistically significantly decreased directly after the regime with the reduction in tightness being sustained at 24 hours. The reduction in heaviness was sustained at 24 hours, 1 week, and even one month after the program. Perceived limb size was significantly reduced at 1 week and at the 1 month follow-up. There was also a significant improvement in the anterior thorax tonometry reading at the 1 month follow-up.PMID: 16353491 [PubMed - in process]

Pub Med

Inheritance of Primary Lymphedema

Lymphedema is the swelling, usually of an extremity, resulting from poor drainage of fluid out of the body's tissues. There are two types of lymphedema. Although the cause is not well understood, primary lymphedema is thought to result from an inherited abnormality of the lymphatic system. Secondary lymphedema is the result of a damaged or blocked lymphatic system caused by traumas such as surgery or injury.

Primary lymphedema has been estimated to occur in about one in six thousand people, more often in females than in males (Dale, 1985). Age of onset tends to be similar within families. Primary lymphedema can be present from birth (congenital lymphedema), symptoms can begin at the time of puberty (lymphedema praecox), or onset can occur in adulthood (lymphedema tarda) (Lewis and Wald, 1984).

Primary lymphedema seems to be inherited in several different ways. Milroy's and Meige's Disease are two forms of primary lymphedema that tend to show swelling below the waist and are dominantly inherited in some families. Milroy's Disease (congenital lyphedema) is characterized by swelling present from around the time of birth. Meige Disease, also known as lymphedema praecox, may appear suddenly around the time of puberty (Wheeler et al., 1981). When the first signs of swelling appear after age 35, this condition is called lymphedema tarda. A recessive form of lymphedema has also been described, as well as lymphedema in association with other traits.

Except for genes on the sex chromosomes, both men and women have two copies of each gene. If only one changed copy of a gene causes a condition, the condition will be inherited in what is called a dominant pattern. If an individual has a dominant condition such as Milroy's or Meige's Disease, the chance of passing the gene to a child is 1 in 2 or 50% with each pregnancy. These odds are the same as getting "heads" in a coin toss.

Dominant disorders are ones that run from generation to generation or are passed along through the family. If a person has the gene for a dominant form of primary lymphedema, there is usually a 50% or 1 in 2 chance of passing that gene on to his or her children. However, not everyone with the gene for this form of lymphedema will actually develop symptoms. Therefore, even if a child does not inherit lymphedema from a parent, he or she may still have inherited the gene and pass the gene that causes lymphedema on to a child. Although we do not yet understand why this "reduced penetrance" sometimes occurs, it is more common in men. In other words, a brother would be less likely than his sister to have symptoms of lymphedema even if they both inherit the same lymphedema gene.

We hope a new understanding of the genetic basis of inherited lymphedema will provide insights into its treatment and contribute to early identification of individuals at risk.

** Editor's Note**

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University of Pittsburg

Lymphedema and Lymphoma - an Update

It has been awhile since I put an update on my lymphedema and lymphoma so thought I would sharewas has been happening.

I went through four weeks of Rituxan chemo in August/September. I experienced immediate results and even a tumor of the lower back calf actually shrank and started to look like it was caving in on itself.

The results were shortlived however, and the tumor resbustly sprouted back to life...seemingly to grow actually faster then it had before.

So, I was off to have a "punch" biopsy. The results took forever and getting an actual diagnosis was even more complicated. This was a result of possible inflammation and the fact that this tumor had already been hit with chemo.

But, what it showed was more then interesting and has caused more questions then it provided answers.

The B cell lymphoma is still definitely there and apparently active. But the results also showed that about 40% of the cell population of the tumor was comprised of "T" cells which also came back with a positive stain for CD3. Is this because of possible inflammation...or are we witnessing the birth a yet another lymphoma? Possible T cell lymphoma? We honestly can't say and don't know.

Another very interesting report was on the skin itself. My lymphedema is caused by "hypoplasia" of the lymphatics. This means the lymphatic system is constricted and/or missing important parts. Tests when I was a teen showed that I am missing significant lymph nodes in the inguinal regions.

However, the pathologist reported lymphangiectasia of the skin. This means that the lymphatics of the skin are actually dialated instead of constricted.

I had never heard of this with primary/hereditary lymphedema. But, apprently after much research, I have found this is not so unsual with lymphedema as long standing as mine.

The deep lymphatics are constricted, while the superficial lymphatics are dialated....both cause the lymph system to be inefficient and unable to move fluids properly...which of course adds to the leg swelling.

I had another round of Rituxan on December 2nd. Kind of disappointed as this time that tumor has not even slowed down. Not only has it continued to grow, but the area surrounding it has changed significantly too.

After 53 years of lymphedema, I am still learning and still finding out new things about this condition.