How to Choose a Treatment for Lymphoedema

The original chapter was written by: J.R. Casley-Smith & Judith R. Casley-Smith (L.A.A,)in December 1998. We are currently in the process of updating it but have made some changes to bring some of the details into current context. Full changes will be made in July 2007

The List below gives various possible treatments for lymphoedema in order of merit, from their published results. It is primarily a personal view of the Casley-Smiths which was backed by their many national and international contacts.
Every person’s lymphoedema varies and it is not possible to give specific guide-lines which cover every possible variation in lymphoedema, other underlying conditions, nor in peoples' lives, desires and priorities.
In reading what is written below there are a number of points to consider:
a. The work was originally written in December 1998; with a superficial revision made in March 2007.  However, next week a new publication, with good statistics, may show that the order is wrong or a new treatment should be included. The Casley-Smiths made a careful study of many results from all over the world and were convinced that (in 1998) this is the correct order.
b. Some regimes are better with some therapists and for some patients. What follows are just from the average results and may not apply to all individual patients.
c. Some regimes with apparently similar results are listed as alternatives in the same group.
d. Some of the regimes only give their best results if patients are compliant and follow instructions (these are marked 'Ç'). Those unmarked do not demand so much compliance, but better results are still obtained if patients are careful.
e. The last three (especially the final one) can have risks associated with their use and so they did not give them numbers.
We now realize that pumps can help some patients with early lymphoedema, and some hospitals and patients feel they have to use them because they can offer nothing else. In the time the Casley-Smith’s wrote this there was little recognition of the importance of the prior clearance of the root of the extremity and due to this lack they saw many cases in which the patient was made much worse by the incautious use of pumps, e.g.: lymphoedema caused in (the previously non-oedematous) genital areas or in the other leg, and bands of fibrous tissue formed just above the cuff. Hence they were very wary of their use and give advice (in the Program of Questions) on how to avoid such disasters: clearing the trunk first, measuring above the cuff and NEVER letting a patient take a pump home to use without prior advice and education. ( NOTE: Nowadays we are a more relaxed about pump use as there is a mounting body of evidence to indicate there benefit – as long as they are used correctly and under some supervision)
f. When 'compression garments' are mentioned, they must be good ones, of the correct compression, a good compression gradient, well fitted, well maintained and changed as required; anything less is useless and may actually exacerbate your condition.
g. L.A.A. exercises are specified because in 1998 they were the only ones with published evidence exists showing their efficacy. In 2007 there is an increasing body of evidence for a range of exercise programs for patients, including Tai Chi, the ENCORE program, other water based programs and others involving higher levels of activity such as weight and Dragon Boating.  Any exercise program can be modified by a therapist, if necessary, for a particular patient.
h. Surgery is not mentioned since it is so specialised. But almost all members of the International Society for Lymphology believe that adequate conservative measures should always be tried before resorting to surgery. These must be given by well trained therapists for long enough periods.  There are a range of debulking surgical options available as well as liposuction. Details of these options will appear in the July 2007 revision and liposuction is mentioned elsewhere on this site.
i. Some treatments (ie laser, LGP Technique (Endermologie), Dynamic Transdermal Stimulation, Electrical stimulation of lymph collectors, Cycloid Massage) have an increasing body of evidence to support their use as a treatment modality for lymphoedema. Details of these will appear in the July 2007 update.

The Various Treatments for Lymphoedema
(in Order of Efficacy)

 NOTE: We have left reference Benzopyrones in the following section. However you need to be aware of the hepatotoxic effect of the oral form of coumarin (Lodema). There is hope however that with attention to the patient’s metabolic an genetic background that in the future that some of these extreme adverse reactions can be addressed.

For information about what is happening in this area we refer you to Farinola, N and Piller N “CYP2A6 polymorphisms: Is there a role for pharmacogenomics in preventing coumarin-induced hepatotoxity in lymphoedema patients  In Pharmacogenomics 8(2) 151-158. you should be able to access details of this paper through the pubmed web site.

1. Ç Complex Physical Therapy (C.P.T.) plus oral and topical Benzo-pyrones (if available) plus LAA Exercises before, during and after the Course of C.P.T.
2. Ç C.P.T. (as for 1), but either without Benzo-pyrones, or without the LAA or other Exercises
3. Ç Manual Lymphatic Drainage (M.L.D.) or C.P.T. performed only 3 times a week rather than 5 or 6 times, plus oral & topical Benzo-pyrones plus L.A.A. or other  Exercises
4. Ç C.P.T. (as for 1), but with neither the Benzo-pyrones nor Exercises
5. Ç CPT from a well-instructed partner plus oral & topical Benzo-pyrones and LAA or other Exercises
6. Oral & topical Benzo-pyrones plus LAA or other Exercises (Compression garments may also help)
7. Ç M.L.D., or infrequent C.P.T. (as for 3), but either no Benzo-pyrones or no L.A.A. Exercises
8. Ç C.P.T. by partner (as for 5), but either no Benzo-pyrones or no Exercises
9. Oral & topical Benzo-pyrones (as for 6), but without L.A.A. exercises
10. Ç M.L.D., or infrequent C.P.T. (as for 3), but neither Benzo-pyrones nor L.A.A. Exercises
11. Ç C.P.T. by partner (as for 5), but neither Benzo-pyrones nor L.A.A. Exercises
12. Ç L.A.A. Exercises plus compression garment
13. Ç L.A.A. Exercises alone
BAD: Pumps (unless the trunk is cleared first by massage, and even then be careful!)
WORSE: Pumps used at home, without supervision
A patient should choose a treatment from this list (as close to the top as possible), depending on what is available, what they can afford, and whether they can comply with wearing (and caring for) compression garments, performing the exercises, etc.

Things to Note about the Best Therapy

What follows emphasises and explains various important aspects of what is, at present, the best therapy regime. Those who cannot obtain the best, for any of a variety of reasons, should try to achieve as many of these as possible.

1. Details and Criteria for a treatment to be considered as
'Full Complex Physical (Lymphatic / Lymphedema) Therapy'

If there is a waiting period before the Course of C.P.T.:

• Skin care should be performed
• Oral benzo-pyrones (and possibly powder &/or ointment) used before the Course,
• L.A.A. or other exercises before the Course (depending on how much they need to be adapted, and remembering that a garment may improve their effectiveness considerably).

During the Course of C.P.T.:

• Massage and bandaging should be performed 5 or 6 days/week, with a least a bandage change over the weekend.
• Skin care and improvement.
• Oral benzo-pyrones during the Course.
• Benzo-pyrone powder (and cream as indicated) during the Course.
• Teaching of L.A.A. or other exercises (modified for the individual patient, if necessary).
• Teaching of self-massage.
• Teaching of self-bandaging, if possible.
• Supply of a correctly-fitting compression garment

After the Course of C.P.T.:

• Oral benzo-pyrones.
• Benzo-pyrone powder under the garment.
• Skin care must be continued.
• Continuation of L.A.A. or other exercises.
• Garments must be worn meticulously, carefully washed and replaced as necessary.
• Self-bandaging at night, if possible or necessary (it is more comfortable than garments).

2. Questions to Ask your Therapist, before you Start

i. How many days per week?
{Four days per week is the ABSOLUTE MINIMUM, 5 are better, 6 better still.}
ii. How many weeks is the Course of C.P.T. expected to take?
{This may vary; you may not need four, or you may need longer.}
iii. Is the therapist available to re-bandage over the weekend if:
a. The bandages are causing problems (e.g. pain)
b. They are slipping down. {This may be a good sign, caused by further reductions, but it needs to be rectified immediately for these to be maintained.}
iv. The costs of the treatment. (see point 'd' in How to Choose a Therapist)
v. What is necessary to maintain the reduction after the Course? These should be:

• L.A.A. or other (Tai chi, ENCORE etc) exercises
• Benzo-pyrones - oral and powder
• Skin care
• Garment - correct compression, well fitted, well maintained, changed as required

vi. Should you be taking benzo-pyrones? (SEE NOTE ABOUT HEPATOTOXICITY) Do they use topical (powder and cream) as indicated during treatment if available?
Results have shown that, for the best results, one should take oral benzo-pyrones before, during and after a Course of C.P.T. The addition of topical benzo-pyrones during and after treatment makes the results even better.} The benzo-pyrones suggested should be:
a. Oral Coumarin, Paroven or bioflavonoids - before, during and after the Course,
b. Coumarin Powder - during and after (this should not affect garment life),
c. Coumarin Cream (ointment) - on dry skin and very fibrotic (hard) areas, scars, warts, etc.}, but NOT under garments since it may affect garment life.
vii. Does the therapist teach you the L.A.A. or other exercises, adapt them to your needs if necessary, and supervise you performing them initially? Can they offer you a video of these to watch? Do they suggest a music cassette with a long version (with a voice giving directions) or a sheet of instruction until you know them, and then a short version to work to?
{A music cassette is worth getting, or undertaking exercise to some form of music tends to make the exercises more fun.) While the LAA tapes and cassettes were available they are not for sale at the moment due to changes in the structure of the LAA.
viii. Does the therapist offer you a number of options for the compression garments?
{The cost of garments varies greatly, so does their comfort. A therapist should at least be able to offer you a number of options:
a. Synthetic or cotton-covered fabric
b. Off-the-shelf (provided it fits correctly) or Custom-made
c. A variety of prices.
If an off-the-shelf is satisfactory, fits correctly, and maintains the shape as well as the reduction of the limb, then this is preferable. Again this may be a question of 'shopping around' for the best-priced (BUT suitable) garment. This is hard to do without the help of your therapist, or a specialised measuring and advice service - offered by some retailers.
However a made-to-measure garment my be more comfortable because it fits exactly everywhere.}
ix. What bandages does the therapist use?
{The best and most lasting bandages are without doubt the Beiersdorf 'Comprilan', low-stretch bandages. Other large range of other low-stretch ones are also available (see 1998 N/L). Bandages should be washed every 2-3 days to maintain cleanliness and their necessary elasticity. They do eventually wear out - they need a certain amount of elasticity to mould to the shape of the limb. When worn out they must be replaced. However two sets will last for at least one Course of C.P.T. and some use afterwards.}
x. Can the therapist treat ulcers?

{If you suffer from these, particularly venous ulcers from chronic venous insufficiency, the therapist still should be able to treat you. Many of these ulcers - even those which have resisted all attempts for years - can be healed by C.P.T. plus the benzo-pyrones.} Applying the MLD/CPT proximal and around the ulcer seems to have the best effect on wound healing.
This document was last amended on March 2007.