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How Can Lymphoedema be Treated?
This section was originally written by: J.R. Casley-Smith & Judith R. Casley-Smith and was last amended by them on July 24 , 2001. Further amendments have been made in February 2007 but newly available research results have not been included as yet.In order that you might be better informed in the interim about new directions in treatment and management of lymphoedema we would recommend a look at the new Journal of Lymphoedema web site. The first issue of this new journal is free to download and contains some information which may help you become more informed about recent advances in this area. Look at www.journaloflymphoedema.com
PLEASE NOTE THAT IN WHAT FOLLOWS THAT FULL ALTERATIONS MAY NOT HAVE BEEN MADE TO THE LINKS IN THIS SECTION AS YET.
Please Read carefully the details in this section prior to clicking on any of the links
Lymphoedema (lymphedema) is an ongoing condition, resulting from a basic lack of lymphatic function. The lymphatic system is responsible for draining fluid away from the tissues in your body and helps in fighting infections. When it is not working effectively, the fluid builds up in the tissues causing swelling and tissue changes (such as hardening). It can also make the limb feel uncomfortable and restrict limb movement and your ability to undertake daily activities. Although it can never be completely 'cured', it can most certainly be very greatly improved.
There are a number of possible treatments for lymphoedema, many of which can be used together. Many, and their combinations, are available from therapists trained at courses which were given by The Lymphoedema Association of Australia by Judith.R Casley-Smith. Other groups and individuals in Australia also run courses on lymphoedema and train therapists. Details of these can be obtained from their individual web sites. One such site which has therapist lists is the Dr Vodder site based in Canada. In considering these courses and the information provided, it is always a good idea to ask about whether the therapist undergoes update programs and importantly to ask each therapist as to when they undertook their last update. The treatment regimens presented below by no means represent the whole range of treatments available and are in fact strongly biased towards those recommended by the LAA and the Casley-Smiths. These are:
1. Complex Physical (Lymphatic / Lymphedema) Therapy (C.P.T. / C.L.T.)
This is called Complex Physical Therapy (C.P.T.) because a number of physical therapeutic approaches are combined to produce the results. (It is also called 'Complex Lymphatic (or) Lymphedema Therapy' - C.L.T. - or 'Complex Decongestive Physical Therapy' - C.D.P.T.) It generally achieves the fastest reduction of lymphoedema; even better results are obtained if C.P.T. is used in conjunction with benzo-pyrones. A course of this treatment normally lasts from 2 to 6 weeks, depending on the severity of the condition and the number of limbs involved. The Lymphoedema Association of Australia has run many training courses to teach some 500 therapists from all over Australia, New Zealand, UK, Israel, U.S.A. and some other countries. An updated list of the courses will be provided later in 2007 however the details for seeking information about the USA courses is email CLTcourses@cs.com and Website: www.Casley-Smith-lymphedema-courses.org A number of therapists and whole clinics use C.P.T. as the mainstay of their lymphoedema treatment program. (a list is included elsewhere ).
C.P.T. consists of four main parts: 1. regular skin care to improve the skin condition and to prevent any infection which will add to the lymphatic load; 2. a special form of massage each day, which encourages the removal of excess fluid and protein from the tissues, softens the tissues and opens alternative lymphatic pathways so that unaffected regions can help to drain the affected region\; 3. compression bandages which are applied to the limb after each massage session (to minimize the re-accumulation of fluid) and the fitting of a compression garments after the whole treatment, to stop the reduced limb from rapidly resuming its former size; 4. special limb exercises which supplement the massage.
The special lymphatic massage first empties the lymphatic regions of the trunk (even of quite distant regions) and the normal areas adjacent to the swollen limb. This creates a cleared area for the fluid from the swollen limb to drain into. Then the limb itself is massaged, starting from the top and moving towards the hand or foot and then back again. The massage strokes are always in the direction of lymph flow, i.e. towards the body. Reduction of the limb will only continue after treatment if the drainage from the blocked area to the normal adjacent areas has been improved by enlarging the size and number of the lymphatics which join one drainage area to the next (the collateral lymphatics). You can imagine this as diverting cars from a traffic jam on the highway to other areas of the highway which are clear and allow the regular flow of traffic.
To achieve good results, C.P.T. consists of two to four weeks of treatment (longer in severe cases), of at least one hour per limb per day. Is should be given at least 5 days per week for best results. With a full course of C.P.T., correctly done, most of the reduction will usually occur in the first 7-10 days. The rest of the time is spent maintaining this, opening-up collateral lymphatic drainage, increasing the pumping of the deeper lymphatic drainage pathways, breaking down excess fibrotic tissue and sometimes performing special work on skin conditions.
C.P.T. generally gives the most rapid reductions. Over 600 of the first limbs treated in Australia (see Section on Results of Treatment) had average reductions of 50% of the limb oedema, with three-quarters of the patients achieving reductions of better than 20%. Of course, these are only the average results. Extremes ranged from 25 to 110 percent oedema reduction. A year later, the reductions still averaged 45% The average results can only give an indication of the results one can expect; everyone is unique and will respond differently! With a longer-term lymphoedema, when the reduction does return the limb to 'normal', sometimes it is less than normal - because of muscle wastage..
The average results are improved considerably (upto 90%) if oral benzo-pyrones are taken before the C.P.T. begins, and if these and the topical preparations are used during and after the Course. One should be aware however that one form of benzopyrone (Coumarin –marketed as Lodema®) has been removed from sale in many countries (incluing Australia) due to its hepatotoxic effects on in the liver in a subgroup of the lymphoedema population and it would be irresponsible to suggest that it remains a treatment option..The edverse outcomes from its use seem to be related to certain people not having the appropriate liver enzyme to metabolise (process) Courmarin, and any person considering their use must first consult with their General Practitioner before taking it. This particularly applies to forms of coumarin which may be imported from overseas countries where the benzopyrones continue to remain in the marketplace. There are a number of alternatives to coumarin the majority of which have been clinically tested although often in smaller trials. These include Paroven (forte), Lymphodran, Bruise and Vein tablets, ginko fort etc. Again talk to your health professional prior to taking any of these or similar agents
Maintaining the limb reductions and improvements obtained from C.P.T. depends on the patient being willing to wear the compression garment on a regular basis, looking after their limb and treating any infection promptly, and persevering with the prescribed limb exercises . (The specially-designed exercises make a great difference both during the C.P.T. and after it.). The therapist may also demonstrate a simplified version of the massage to you or your partner/carer so that you can undertake it at home. Regular care of the limb will help it to maintain the limb reduction and softening. If required, another course of the therapy can commence six months to a year after the first,
The cost of a course of treatment varies from one therapist to another, and also depends on the time necessary for treatment, the number of compression bandages required and the type of garment necessary afterwards. Members of some private health funds can claim certain reimbursements; unfortunately this does not apply to all funds, nor to Medicare! However, provided instructions are followed, there is nearly always a reduction - without the pain, or much greater expense, of surgery - which often gives much poorer results or even worsens the condition.
When choosing a therapist, find out what training and how much experience they have had, and with what success. It is also important to ask the therapist when they undertook their training (ie how many years ago) and when they had their last update or refresher training. Discover what bandaging and compression garments they use for lymphoedema. If they have a certificate from the L.A.A or from a reputable German Clinic (e.g. the Földi's), or the Dr Vodder School, then you will know that they have at least had the appropriate training and are regularly recertified! However, this does not necessarily mean that they have the experience, or the time, to produce excellent results.
The full treatment, if done privately is expensive, but it may well be cheaper in the long-term and certainly leads to an improved life. In Australia, these intensive treatment programs are most often not available in the public hospital system, however in some instances those who are Gold card holders in the Repatriation system may be able to get fairly close to the full treatment program within the hospital environment. Ask your Department of Veterans Affairs Office for details.
Your doctor can refer you to a therapist or to a specialist doctor, which is particularly helpful if you come from a distance, since he/she is then on hand to treat any infections, etc. We strongly suggest that your own doctor ensures that your limb is free of any infection (ie: cellulitis) before you go for treatment, since it places much more of a load on your lymphatic system and interferes with the treatment program. (However, chronic ulcers and fungal infections can be treated satisfactorily during C.P.T.). The Calsey-Smiths strongly believed that you should take benzo-pyrones (such as Paroven® or Paroven Forte® or other oral preparations with rutosides in them) whilst waiting for an appointment for the C.P.T. These may improve the results considerably and continuing to take them will make it easier to maintain the reduction afterwards. These types of preparations also reduces chronic venous insufficiency (which has a component of lymphoedema), including ulcers caused by this disease. Currently in 2007 this would also seem to confer benefits but again speak to your health professional so you can get the best outcomes
In some instances (ie DVA card holder or high level private insurance or when at one of the clinics such as the Foeldi Clinic in Germany or the Dr Vodder one in Austria) you can stay in hospital during treatment, but may prefer to stay in a hotel or with friends. It is helpful if you stay in hospital in case bandages need adjustment at night, as the limb is more at risk during treatment. The hospital stay can be reimbursed if you belong to some health funds. It is of course advisable that the diagnosis of lymphoedema is certain before treatment is started.
After C.P.T. to gain the best outcome its recommended to regularly wear a good compression sleeve or stocking (the amount of time it is worn is up to you and your therapist to decide – however, studies have generally shown that the longer the period of use the better the outcome). The garment needs to be looked after properly, and changed when necessary (compression garments generally loose their elasticity after 3-6 months of use). It is a waste of time and money to have this course of treatment but to let all the oedema come back just because you do not wear the compression garment properly! You must also continue with the limb exercises (such as tai chi and chi kung and perhaps water based programs such as ENCORE and to take benzo-pyrones if they are available in your country (but only following a discussion with your GP). If you, your partner or carer can bandage your limb as it was done during treatment, you will probably find this more comfortable to sleep with than a garment.
You may wish to have a repeat course of C.P.T. in six months to a year and possibly do the same after another year. These return visits maybe beneficial because after this time the body has re-modeled itself and it is possible to reduce the oedema further still. Some patients benefit from more frequent but possibly shorter courses. It must also be remembered that the sooner lymphoedema is treated, the better. A recent, soft lymphoedema can often be reduced to almost normal size, but good reductions occur even with very long-standing lymphoedemas.
While C.P.T. is the fastest treatment, many people cannot afford it or find it difficult to wear compression garments; this is one of the reasons we are interested in the fore mentioned drugs , which were shown to be successful in trials without the use of compression garments. They provide an alternative pathway for the removal of excess protein from the tissues and may improve lymphoedema, but slowly over months to years.
They also help to prevent infections in the limb. Even a course of only a few months softens the limb, making C.P.T. much more effective. They are generally safe (with the exception of one benzopyrone called Coumarin - which has been shown to cause some hepato-toxic effects in the liver in some patients), have minimal side-effects nor interactions with other drugs, and have been used in many countries for many years. Coumarin and other benzopyrone type medications have many modes of action but generally they work by making the body's macrophages in the swollen region break down more of the excess protein than normal; once this goes, so does the excess water, the fibrous (hard) tissue, and the environment for bacterial growth.
Coumarin, also known as 5,6 benzo-alpha -pyrone, 5-6 BaP. The early studies recommended using 2 tablets (400 mg) a day (although some patients have got much better results with 4 per day). The correct generic name of this drug - 'Coumarin', often causes confusion with a group of anticoagulants; Coumarin is NOT an anticoagulant (which slows blood clotting). As mentioned earlier, this medication, while shown in clinical trials to be very beneficial, has been withdrawn from most markets due to hepatotoxic liver effects in some patients. The reasons for these adverse reactions are now understood and on this basis there is potential for the future re-introduction of oral coumarin as an adjunct to the treatment of lymphoedema. However, further research is probably required before this occurs.
Coumarin ointment and powder which is applied to the skin may be available from pharmacies in some countries (see separate Section on suppliers). The powder can be used under a compression garment, during the massage of C.P.T. and on venous ulcers. The ointment can be used on any 'dry' areas during C.P.T. but the powder is better for moist areas and under garments. They are applied twice a day if possible. The Coumarin ointment and powder have not been shown to have adverse effects, however prior to considering its use please talk to your General practitioner
One of these drugs which has not hepatic effects is Paroven® This preparation should be taken according to the packet instructions. It can be purchased over the counter at most pharmacies but can be expensive - but people in some health funds can get them for much less. Also the newer form of stronger Paroven® called Paroven Forte®, gains good subjective results even with the recommended dose on the box of some 2 tables per day initially and then a maintenance dose of one per day. However, you should always discuss this with your doctor before taking it. It is currently commonly used for venous conditions but also helps the lymphatic system.
Diuretics ('fluid tablets')
Unfortunately these are not really useful for lymphoedema (except in emergencies), but may of course be needed for another underlying condition such as oedema associated with heart failure or some venous conditions. Diuretics only remove water, yet lymphoedema is caused by excess protein in the tissues, which attracts and retains the water. If the protein is removed, the water leaves via the blood system - hence the lymphoedema is reduced (as is done by the benzo-pyrones). Diuretics concentrate protein in the tissues and can therefore can increase the retention of water (instead of decreasing it).
If diuretics have been taken over a long period or time and then suddenly stopped, the body (i.e. the kidneys) often do not cope well with the change, and can take a month or even longer to re-adjust. During this time, there can be an immediate worsening of the lymphoedema. It is this worsening of the lymphoedema after stopping the use of diuretics which has lead to the thought that they actually helped in lymphoedema. It does seem better if there is a decision to stop taking diuretics, to gradually reduce the dose at the start of C.P.T., or when benzo-pyrones are given. Under these conditions the swelling is controlled, side-effects are minimal, and the patient is better off! However, this may not be possible for all patients and before changing your diuretic medication you must consult with a General Practitioner or your Specialist.
These are considered an essential part of C.P.T., however they are sometimes used on their own. The use of compression garments, by themselves, is simply a 'holding operation'. Used alone, they will not reduce the lymphoedema. They may maintain the size of the limb, although it will probably still slowly increase, but much more slowly than if they were not worn. When good compression garments are used in conjunction with special exercises for lymphoedema, some patients are achieving not only a maintenance of the limb size (rather than an increase) but in many cases there is a slow reduction. If used at the same time as the benzo-pyrones, the garments may cause more rapid reductions than without them; however this has not yet been formally evaluated by research.
Two important aspects of garment selection and use are; 1. that they have the right compression for your limb (a specialist or therapist can advise you on the appropriate compression) and that the garment has a compression gradient (ie: the garment is tighter at the bottom of the limb and less tighter at the top of the limb to encourage fluid movement back towards the body) and 2. the garment fits properly and is comfortable (ie: no rubbing or constriction of the limb – which is counterproductive).
Moderate exercise, particularly if designed for the treatment of lymphoedema, is helpful. Too much exercise (i.e. to the point of getting tired or causing muscle strain) may make lymphoedema worse, although recent studies have indicated that exercise does not precipitate or worsen lymphoedema, as long as there is a proper warm up and warm down procedure. Examples of where exercise can be beneficial are the large numbers of persons around the world who now participate in dragon boat activities. With leg lymphoedema, it is best to avoid exercise which places great strain on the legs (e.g. aerobics or trampolines). Swimming and hydrotherapy (exercises in the water such as the ENCORE program) are a very good form of exercise, while the jets in spas can be used to supplement these – provided the water is kept cool. Regular exercise is also important in maintaining general well being and a healthy weight. The maintenance of a healthy weight is particularly important in those with (or risk of) lymphoedema, as obesity has been shown to increase the risk of developing lymphoedema and the incidence of infection (cellulitis) in those who already have it.
Other Treatments for Lymphoedema
These are in discussed in a separate section. It is important to consider each of these therapies carefully as some may be helpful whilst others can be quite dangerous.
When Should Treatment Begin?
Ideally treatment should begin before there is any observable lymphoedema! (ie: before the swelling appears). Early lymphoedema can be detected now-days by a technique called bio-impedance. A patient with a limb at risk (e.g. after an operation involving the lymph nodes) should be advised of things to avoid. A risk assessment is always worthwhile especially if you perceive you are at high risk. Special exercises, changes to skin care, diet and/or benzo-pyrones may help to prevent lymphoedema, or may delay its onset.
There is some evidence that lymphoedemas may start during or after a aircraft flight, although this is anecdotal. Interestingly there is also a recent report that wearing an inappropriate garment when flying may precipitate or worsen lymphoedema – so there is a delicate balancing act needed here and you should always seek the advice of a lymphoedema practitioner, as every person is different.. The Casley-Smiths recommended wearing a compression garment (or compression bandages if these can be applied properly) whilst traveling in an aircraft. Do this if you have lymphoedema or even if you only have a limb at risk after an operation. Its important that you do not have any sensation that the garment or bandage is exerting a tornequet (restricting) effect however, as this may actually compromise lymphatic drainage.
Avoiding burns or injuries to the limb carrying heavy weights and tight/constricting clothing (especially around the groin, abdomen and armpit areas) can also help (see Section on Do's and Dont's ). Needless to say, these rules also apply once lymphoedema is present. Once lymphoedema has begun, the sooner it is treated the better the reduction that can be achieved. The longer treatment is delayed, the more difficult it becomes.
A Note on Infections
Any infection should be treated by antibiotics within the hour, rather than several days later - when hospitalisation may be necessary. At the start, 'infection' just looks and feels like a small, red, warm and often painful area on the skin of the lymphoedematous limb. DO NOT NEGLECT IT, it will make the lymphoedema worse. Do not confuse a local infection with an overall 'feeling of warmth' which can often be felt over the whole of the lymphoedematous tissue and is just a part of the disease; this will go when the lymphoedema is treated.
Similarly, do not neglect even the faintest signs of tinea (slightly rough, red patches with peeling white skin) or eczema or dermatitis (these may need steroidal creams which are prescribed by your doctor). Bacterial or viral infections somewhere else (e.g. the 'flu) can make lymphoedema worse, through their general effects on all the body. Where appropriate, antibiotics should be taken to try to stop secondary bacterial infections.
Some patients who are particularly susceptible to infections (or ‘cellulitis’) in the limb often have a packet of oral antibiotics or a script for these on standby. This is so they can commence antibiotics as soon as they detect that an infection is present. This type of regime must always be discussed with your doctor to see if it is appropriate for you and that the right type of anti-biotic is prescribed.
If you have Problems - with any form of Treatment
If you have had a problem with any form of therapy, PLEASE return to your doctor or therapist involved and show them the problem. So many patients are angry with a result and fail to pass on this information back to the person or group which recommended it. If they are not told of the adverse or poor outcome, the doctor or therapist then considers that all is well and that they have been successful - and the same problem may happen with the next patient. Importantly, if you tell them, they may be able to fix the problem quite easily - then everyone benefits! Please keep in good communication with your health professional and tell them about when you get a good response and when you gat a poor one, this is an important way for all of us to advance the quality and effectiveness of your treatments.
We must stress the need for co-operation and compliance by patients. No matter how good the therapist or the therapy, the patient MUST do their part in regard to wearing and maintaining compression garments (and replacing them when necessary), skin care, the daily exercises, and the regular taking of benzo-pyrones (if appropriate) and antibiotics (if there is an infection or a risk of re-occurrance). Otherwise, the patient can not expect to maintain their treatment results, nor to achieve a further reduction after treatment. We have included a separate list of do's and don'ts which should be helpful.
At the moment the L.A.A. is unable to give individual advice to yourself, your therapist or your doctor. We hope to again be able to do so in the future, but in the meantime we suggest you explore your local options for appropriate information and advice. We would also suggest that you explore information from the internet but be aware that not all is accurate or true. As a recommendation we would suggest a look at the pubmed site www.pubmed.com as it contains references to articles which have been published in the medical and scientific literature.
The Swollen Ankles and Feet of older or immobile persons
As the body ages the skin becomes less elastic and less able to maintain the tension that it use to. As we become older, all the systems of the body are not quite as effective as they used to be. We do not do as much exercise, we sit for longer in a chair - usually with our legs down. Because of this, ankles and feet often swell (especially by the end of the day). This can lead to discomfort and infection - especially if the skin or nail beds are cut or damaged One way to deal with this may be to:
- a). Consider taking benzo-pyrones , such as Paroven® or Lymphodran® or a similar preparation (these do not contain Coumarin and have not been shown to have hepato-toxic liver effects)
- b). Consider using either Coumarin ointment (if available) or, if using a compression sock, Coumarin powder on the foot and leg (and around 'arthritic' knees - even hips, if these are problems).
- c). Consider using Urederm (produced by Hamiltons, or it’s equivalent) on calloused and rough areas. NEVER let these areas be 'shaved' (cut) off. Urederm will soften the areas by drawing moisture inside the tissue to the outside, so leading to their disappearance. If the feet and heels are particularly dry, a regular warm foot bath with some bath oil (ideally vegetable based rather than petroleum based) added can help to soften the feet.
- d) Regularly applying a vegetable based moisturizer to the legs and feet to maintain skin suppleness and to prevent drying and cracking (which provide the perfect entry point for bacteria and subsequent infection)
- e). Use a soft, calf-high light compression garment (e.g. Venosan Support Hose). This may have to be of a lighter compression as garments with a heavier compression are often hard to put on and tolerate in the older population.
- f) Elevate the legs on a foot stall whilst sitting. When sitting, make sure you contract and relax the leg muscles and move the feet back and forth (or in a circular motion) on a regular basis. This muscle movement will help the fluid from the legs to return to your circulation and to be drained away..
It takes about 3 months for a large swollen foot and ankle to undergo a significant reduction. Massage would speed this process up, but may not be really necessary and may be invasive and difficult. One of the major points about this fairly simple treatment is that the attacks of foot infection (leading to inability to walk, not to mention great pain and distress) are reduced. Mobility is maintained and life, at least in this regard, is enhanced. Many of the aspects of quality of life for the aged depend on mobility.
This document was last amended in September 2006 however major changes involving new research information have not been added in detail.
Points to Consider when Choosing a Therapist
1. Initial contact over the telephone.
It is important that YOU feel you get a sympathetic and warm response to your problems.
2. Initial interview with the therapist regarding treatment.
a. Ask your doctor(s) to give you all the information about your case, and any other disease conditions you have. This makes it easier for a therapist to assess you and to offer the best form of treatment.
3. Ask your therapist what is involved in the treatment with regard to:
a. The time commitment required for the treatment
b. The cost of the overall treatment program
c. Ongoing management
4. Expectations about results
{These vary for every individual case and also on your compliance with the treatment regime. They can NEVER be totally predictable nor guaranteed before treatment. However, an experienced therapist should be able to give you a good indication of what to expect, given good compliance on your part - i.e. wearing and looking after your garment, doing exercises regularly, taking benzo-pyrones regularly, etc.}
c. Your therapist should be prepared to discuss:
What is the best treatment for you, with regard to your financial circumstances (taking into account any re-imbursement from a health fund, if you have one, and if they have obtained a Provider Number for that fund).
They should also inform you about the ongoing costs of garments and general care {Does your fund - if you have one - cover these?}.
The therapist should be able to work out for you what is the best available treatment for you, with respect to the costs, your time, your work, family circumstances and your willingness to comply with the necessities of the various regimes.
d. Costs of treatment
1. Therapists charge differently. Those who charge less are not necessarily less competent. Some work partly for the love of being able to produce long-lasting benefits to patients like you. However, it is always best to apply the questions discussed in this section to any therapist you decide to be treated by.
2. Pharmacies also charge what they like (e.g. for the benzo-pyrones). Again, it is worth checking different prices. Special groups (e.g. Friendly Societies, 'National Pharmacies') are often well worth joining just for these and other discounts. Some health funds provide good benefits on prescription drugs if you have 'extras' cover. You often can use both of these. Some pharmacy items can even now be purchased over the internet, as long as you have a script. In Australia the Pharmacy direct site is a good one to check on as is the Golden Glow site.
e. Maintenance of the reduction. Your therapist should be prepared to:
1. Teach you correct exercises - adapted for you - based on the LAA. exercises. {A great deal of time was spent on the design of these to enable them to mimic the massage program with movement and to assess their results. However, they should be adapted to each individual case and you should be taught how to perform them for optimal results.} or other exercises which have some supporting clinical evidence for their effect. These include the ENCORE water based program for women after breast cancer surgery, tai chi and chi kung, shibashi (trials currently under way 2007). There are however of course other exercises and programs available. Before accepting any of these, ask what the evidence is for their effect and how these outcomes relate to your condition –ie what you might expect from the exercise program.
2. Teach you, or a partner/carer, how to bandage the limb - if at all possible. {Bandages are more comfortable and better, especially at night and also for long car, bus or aircraft flights.}
3. Teach you, or a partner, a form of maintenance massage - if at all possible. {This should not take too much time nor have to be performed too often. If you use the L.A.A. exercises, part of this will be covered during the exercise period each day.}
f. Does your therapist teach you HOW to put on the garment and how to adjust it for maximum efficacy? Do they insist that you wear rubber gloves to do this?
{This is both to protect and enhance the life of the garment and to allow you to get it on and to adjust it more easily - both for the lengthwise position (especially if it has a seam) and the compression gradient}.
g. Your therapist should make you realize that lymphoedema is an ongoing condition and that the ultimate result very much depends on what you are prepared to do for yourself. If you do not want to do very much, or spend much time, there are some ways around this (e.g. taking benzo-pyrones alone), BUT combined therapies work much better than individual ones
Important Things for You to Realise About Treatment
1. If possible, prevent swelling from occurring (if you have a limb 'at risk' - see the do's and dont's section).
2. If a limb has been reduced to the 'normal' size, or nearly so, and if it is maintained at this for nine months to a year, many of the routines to which it was necessary to comply (e.g. garments, exercises, etc.) MAY be able to be gradually reduced. However, if this occurs it is essential to measure the limb frequently to ensure that the reduction is still being maintained. Your therapist will be able to show you how to measure your limb using a measuring tape. (It would be wise to continue with the benzo-pyrones until quite sure that the reduction is permanent since they can provide safe-guards).
3. If these treatment procedures are reduced or discarded altogether, they may have to be quickly reapplied if there is inflammation in the limb or adjacent area (e.g. infection, accidental trauma, etc.), or excess fluid load (e.g. during a long flight or car trip). A garment should always be kept in readiness and worn prophylactically (e.g. during a flight). Also keep antibiotics on hand if you have suffered from infection of the lymphoedematous limb in the past (see section on ‘A Note on Infections’).
4. If you have persistent trouble with fungal infections (tinnea), then it is worthwhile discussing with your doctor taking a course of oral anti-fungal tablets (however this may be expensive). Maintenance of skin care, keeping the skin supple and moistened, should NEVER be neglected.
5. If you have great difficulty wearing a garment at night, and you can not bandage yourself, then you could ask your therapist to order you a garment that is a lower compression (but the same size). It is worth keeping an old garment for this purpose if necessary. If your limb reduces anyway at night, without a garment, you probably do not need to wear one at night. However this is not advisable during the first 9-12 months after a full C.P.T. treatment, while the limb is stabilising.
6. If your limb has not reduced to reasonable size during the first course of C.P.T., you may wish to return for a second course at a later stage (from 6 months onwards).
If you are unfortunate enough to have an infection in the limb after treatment and the swelling is such that you can not get your garment on, then a few days of treatment after the infection has cleared may be all that is necessary to allow you to wear it again.
In the meantime, you could take a benzopyrone preparation such as Paroven or others mentioned earlier.And as soon as practicable, apply bandages - if possible. At this stage you should also be able to exercise a little (e.g. flexing and pointing the foot or 'making a fist' with the hand.).
Some Suggestions for Questions to ask your Therapist
This list is based on the information presented above.. We assume that you want the best combination of therapies for the most rapid, greatest, and most long-lasting results. If a lesser treatment is all that is wanted, many questions will still apply.
Some answers are, in our opinion, enough to show that the patient will not receive what we consider to be the best current therapy so we advise them to 'Try elsewhere'; other answers - by themselves - are not inconsistent with the best therapy, but we advise that the patient should 'Be cautious'. Comments and reasons for our advice are given in italics.
Questions for the Therapist, Answers and Suggested Actions
A Do you provide full C.P.T.?
Yes Go to question B. (Make sure that you check the details of full C.P.T.!
No: Be cautious'
B.1 Will you help me decide the best combination of therapies,
given my geographical, financial, social and other circumstances?
Yes: Go to question C.
No: Try elsewhere
B.2 Is the therapist on the L.A.A. List* , or have they been trained in the Földi School or Dr Vodder School or another world recognized school? (For these therapists you will need to look at their respective lists – often obtainable on their website) You can also send an email to their websites to find out about if a particular person has been trained by them.. Once you have contacted the therapist, ask them, whether they receive updates and have an opportunity to recertify their practice?
Yes: Go to question D.1.
No: Ask if someone on the Lists will be supervising your therapist, and how closely (question C.1).
C Is the Supervisor on the Lists, or has had world recognized training?
No: Try elsewhere
Yes: If you are SURE the amount of supervision is enough, go to question D.1.
NOTE All L.A.A.-trained Therapists who wish to be mentioned are on this L.A.A. List; all who have been trained, have L.A.A.-Certificates of Attendance at a Course, as do those from the Földi and Dr Vodder Schools. There may of course be good therapists who trained elsewhere, but we do not know their training. This particularly applies outside of Australia.
D1 How many times a week do you believe the massage should be performed?
4 to 6 times a week: Go to question D.2.
3 times a week or less: Note that any less than 4times a week may produce less than optimum results. If finance is limited, it is possibly better to be treated properly for two weeks than inadequately for four! However, clearly a lesser amount or frequency of treatment is better than none!
D.2. If I can not afford a full course, will you do a short course?
Can you train a carer/partner to massage me?
Yes: Go to question E.1.
No: Be cautious
{Having good, intensive treatment for 2 weeks - although usually not as good as for 4 weeks, is often a great help.}
E.1. Are you (or someone else trained in compression bandaging) available over the weekend if my bandage gets too tight?
Yes: Go to question E.2
No: Be cautious. It is important that the compression bandages are applied appropriately, and if too tight, reapplied. If this is the case over the weekend, someone trained in the technique needs to be available to reapply the bandaging.
E.2. If treatment is 5 days per week and if I can not remove and reapply my bandages and shower, will you be able to clean my limb & re-bandage it once during the weekend?
Yes: Go to question F.
No: Be cautious
F. Will the same therapist be treating me all the time?
Yes: Go to question G.
No: Be cautious
Two therapists may work well together. If that is so, this can be very good indeed. However, frequent changes of therapist (in which can occur in some public hospitals) can lead to less than optimal result but certainly is better than no treatment at all.
G. What is your view on the use of benzo-pyrones such as Paroven®., Lymphodran and others. Do you see a benefit in my taking any benzo-pyrones before, during and after the Course?
Yes: Go to question H.
No: Seek another opinion about their benefits and how they might help you. Nowadays many therapists are reasonably well informed about these preparations, although this varies from country to country. Some therapists have excellent results without them, but the average results seem to be generally better when they are used. Whilst Coumarin is off the market, preparations containing bio-flavonoid such as Paroven®, Lymphodran® etc. can be used as a substitute, but please discuss this with your health professional first.
H. Do you use benzo-pyrone powder when you massage? Do you advise its use afterwards?
Yes: Go to question I., but be aware that while the topical form of Coumarin has not been shown to have any hepatotoxic liver effects, the oral form does have in some patients. Talk to your GP or health professional and ask for evidence of safety of the topical forms.
No: Consider other forms of powder which may make the massage process more comfortable. Talk to your therapist about this and ask what they use.
I. Do you use/recommend various makes of compression garments?
Yes: Go to question J.
No: only 1 product available/recommended: Be cautious
Some makes are better for some patients and whilst other brands are better for others. Using only one brand is not likely to serve all patients best. Made-to-measure garments may be better than off-the-shelf but are more expensive, so discuss with your therapist what is most appropriate for you.
J. Do you use LAA exercises or some other exercise program?. Is this supported by either music or video tapes or printed sheets? There are a number of other exercise programs which have been tested clinically. Ask your therapist for indications of this. Even simple ones such as Tai Chi and breathing have been shown to be of benefit so the program does not have to be long or complicated.
Yes: Go to question K.
No: Consider what programs you might be able to use independent of the therapist, but tell them you are doing them so you can be sure that they are really going to help. Even changes to your breathing pattern and simple Tai Chi has been shown to be helpful.
K. Do you use pneumatic pumps during therapy?
Yes: Be cautious. Ensure that the top of the limb and the adjacent area are cleared first (using massage), so that the fluid removed from the limb has somewhere to go and doesn’t accumulate in a previously ‘normal’ area. Used properly, however, a compression pump maybe helpful. Go to question K.1.
No: Other therapies ie. garments, exercises, self-massage, can do just as much as pumps themselves. Some therapists, especially in hospitals, are forced to use pumps because of lack of funds or staff. Ensure that you have proper supervision if you are using a pump and that you can recognize the signs when the pump is not working as it should. Warning signs include fluid being moved to the wrong places or not being cleared from the limbs properly.
K.1. Can I use the pump at home?
No: Go to question K.2.
Yes: Ensure that you and/or your partner are well aware of how to clear the trunk/abdomen areas first (using massage) and can quickly recognize the signs of when the pump is not working as it should. Pay particular attention to the pressure and cycling of the pump, knowing that it is correct.
K.2. If you use a pump, will you clear my trunk (or show me or my partner how to clear my trunk) with massage before using it?
Yes: Go to question K.3.
No: Try elsewhere for another therapist since this truncal clearance is essential.
K.3. Will you measure my limb above the cuff while using the pump?
Yes: This shows that they are aware of the dangers of pumps and are careful.
No: Try elsewhere: This shows that they are not taking into consideration the basic mechanisms of lymphoedema, nor are they possibly up-to-date with the dangers involved with pumps when used incorrectly.
K.4. What pressure do you set the pump on?
Pressure above 40mm Hg may cause damage to the limb and you should refuse its usage.
L. Will you monitor my limb or show me how to monitor my limb in between treatment sessions?
Yes: Regular monitoring of the limb is important, as it gives you an idea of whether it is responding to treatment of getting worse. The response of the limb should be taken into consideration when planning treatment and the treatment adjusted accordingly.
No: Try elsewhere.
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