How to Chose a Therapist to Treat Lymphoedema

Groups in Australia and some Other Countries which are involved in the Support of Patients or the Spread of Information about Lymphoedemaare listed elsewhere on this site. These groups such as the Dr Vodder School and others may have their own comments on how to choose a therapist  and we would suggest you also look at these.
This information was originally written in 2001 by J.R. Casley-Smith & Judith R. Casley-Smith who are the founders of the L.A.A. Some modifications and additions to the detail have been added in March 2007. 
There is a list of therapists who have been trained by the L.A.A. or those we know of whom have had approximately equivalent training. It is ideal if there is one nearby where you live; the less traveling while being treated the better.
However it is even more important to find and go to a good therapist, one that you fees comfortable with (especially as your compliance as a patient is essential for the best results), and one who can offer the grade of treatment which the patient wants.
It is VERY important to discuss all aspects of the proposed treatment with a therapist before commencing the Course. This avoids complications and disappointment on both sides.
Ideally you should obtain a referral from your doctor. You may prefer to get an idea of the costs involved from one or more therapists before, before getting the referral letter to the therapist of your choice.  The GP referral is not essential nor necessary but at least then the therapist can get some accurate information about your medications, prior medical and surgical history which might also help them gain an optimal outcome for you.
An analysis of 408 limbs with unilateral lymphoedema by the Casley-Smiths showed that during the Course of CPT. three-quarters of patients who did not take benzo-pyrones obtained reductions of 19 percent or more of the oedema. This increased to 29 percent or more when benzo-pyrones were used. (Note  that lodema – the coumarin based benzopyrone is off the market due to hepatotoxicity problems in its oral form. Other Benzopyrones such as those found in Paroven, Lymphodran and Bruise and Vein capsules do not have these adverse effects according to the current literature)
After a year, the reductions were 13 percent or more with out benzo-pyrones, and 23 percent or more with them. (During the Course, the average results were: 51 percent without benzo-pyrones, and 67 percent with them.) After a year these were 43 and 64 percent, respectively.)
We should be pointed out that these results were for all patients. They did not take into account if they were compliant (e.g. did their exercises, looked after their limb and garment), or if they were not. Those who were, had better results than these; those who were not, had worse ones. These are the MINIMAL results a patient should be able to expect. If a therapist or clinic has results as good as these (many have better) taking account of ALL the patients they have treated, one may be confident in them and ignore the rest of this Section - provided that their figures are accurate.

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 help.
b. Ask your therapist what is involved in the treatment with regard to:
1. Time
2. Cost
3. 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 partly or completely?}
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.

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 also give other discounts. Some health funds give good benefit on prescription drugs if you have 'extras' cover. You often can use both of these.  The web is often a good place to find discounts ie pharmacy direct offers significant discounts on Paroven but other sites are from time to time cheaper  so look around – and make sure you talk to your health professional about what you are intending to take!
e. Maintenance of the reduction. Your therapist should be prepared to:

1. Teach you correct exercises - adapted for you - preferably based on the L.A.A. 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.}. Of course there are now (2007) a range of other exercise programs devised by other groups which have good supporting evidence so consider an exercise program which suits you and is known by the therapist. Simple exercises such as tai chi have recently been shown to be very beneficial as have  water based programs run by ENCORE in Australia and activity programs such as those encouraged by the Dragon Boat groups have good benefits.

2. Teach you, or a partner/carer, how to bandage - if at all possible. {Bandages are more comfortable, and better, 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 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. Thus it can be adjusted with a correct gradient (higher at the end of the limb and lower next to the body.}
g. Your therapist should make you realise 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. the benzo-pyrones  like Paroven alone), BUT combined therapies work much better than one alone.

Important Things for You to Realise About Treatment

1. If possible prevent swelling occurring (if you have a limb 'at risk' - see do's and dont's).
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. (It would be wise to continue with the benzo-pyrones until quite sure that the reduction is permanent since they provide safe-guards in so many ways.)
3. If these treatment procedures are reduced or discarded altogether, they may have to be quickly reapplied if there is inflammation (e.g. infection, accidental trauma, etc.), or excess load (e.g. a long flight or car trip). A garment should always be kept in readiness and worn prophylactically (e.g. during a flight). (Remember also that when you have  completed your flight to keep your garment on for a few hours afterwards to allow your arm to re-equilibrate to the changed atmospheric conditions.. Also keep antibiotics on hand if you have suffered from infection of the lymphoedematous limb in the past.
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 cannot bandage yourself, then you could ask your therapist to order you a garment of 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 normal 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 cannot get your garment on, then a few days 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 oral benzo-pyrone if you do not take them already, smooth or puff Lodema powder (see warning about oral form) over the limb 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.)

A Program of Questions

This list is based on the notes (above). It will probably grow in future, and we would welcome suggestions from patients, therapists and doctors to improve it. 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 wanted, many questions 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 : Turn to question B. (If you are sure they do; but check the details of full C.P.T.!
No: Be cautious
B. Will you help me decide the best combination of therapies,
given my geographical, financial, and other circumstances?
Yes: Turn to question C.
No: Try elsewhere
C. Is Therapist on L.A.A. List , or have they been trained in the Földi School, the Dr Vodder School or another world recognized school ?  Do they receive updates and are they regularly reviewed in terms of their treatment technique?
Yes: Turn to question D.1.
No: Ask if someone on the List will be supervising your therapist, and how closely (question C.1).
C.1. Is the Supervisor on this List, or has had world recognized training?
No: Try elsewhere
Yes: If you are SURE the amount of supervision is enough, turn to question D.1.
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 School. Those trained by the Dr Vodder School appear on a separate listThere may of course be good therapists who trained elsewhere in Australia , such as the courses run by Michael Mason, Hildegard Ruel-Hirshe, Brenda Lee etc and if your thereapist is trained by them its best to look at these trainers web sites to see how their students are followed up and updated.
D.1. How many times a week is the massage performed?
5 or 6: Turn to question D.2.
3 or less: Try elsewhere
Anything less than 5 times a week will only produce mediocre results; if finance is limited, it is FAR better to be treated properly for two weeks than inadequately for four!
D.2. If I cannot afford a full course, will you do a short course?
Will you train a carer/partner to massage me?
Yes: Turn to question E.1.
No: Be cautious
{Having good 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: Turn to question E.2
No: Be cautious
E.2. If treatment is 5 days per week and if I cannot remove and reapply my bandages and shower, will you clean my limb & rebandage it once during the weekend?
Yes: Turn to question F.
No: Be cautious
F. Will the same therapist be treating me all the time?
Yes: Turn to question G.
No: Be cautious
Two therapists may work well together. If that is so here, this can be very good indeed. However frequent changes of therapist (as in some public hospitals) lead to poor results.
G. Do you advise me to take oral benzo-pyrones before, during and after the Course?
Yes: Turn to question H.
No: Be cautious
A number of good therapists did not advise them until recently, however by now all have now been informed of the benefits of Lodema or Paroven added to C.P.T. Some have excellent results without them, but the average results are better when they are used. While coumarin requires a prescription, (bio)flavonoids do not and can be substituted.
H. Do you use benzo-pyrone powder when you massage?
Do you advise its use afterwards?
Yes: Turn to question I.
No: Be cautious(reasons as in 'G')
I. Do you use various makes of compression garments?
Yes: Turn to question J.
No: only 1: Be cautious
Some makes are better for some patients and others for others. Using only one brand is not likely to serve all patients best. Made-to-measure may be better than off-the-shelf but are more expensive.
J. Do you use the LAA or other exercise programs?  
Yes: Turn to question K.
No: Be cautious and perhaps ask why not

K. Do you use pneumatic pumps?
Yes: Be cautious and ensure they are used correctly. Turn to question K.1.
No: You have found a good therapist but just the same there may be times when a pump is a good option for you perhaps at home or under the therapist’s treatment program
Any other therapies used with pumps (e.g. garments, exercises, self-massage, benzo-pyrones, etc.) may help gain a better outcome than the pumps themselves. Some therapists, especially in hospitals, are forced to use pumps because of lack of funds for hands on treatment
K.1. Can I use the pump at home?
No:  Turn to question K.2.
Yes:  Ensure that you are well instructed in its use and can recognize early signs of when its not working well. 
K.2. If you use a pump, will you clear my trunk with massage before using it?
Yes: Turn to question K.3.
No: Try elsewhere but at least tell them about the problems of not “emptying the buckets” before this treatment occurs
'Yes' shows that they are aware of dangers of pumps and are being careful.
'No' shows that they are not taking into consideration the basic mechanisms of lymphoedema, nor are they up-to-date with the possible adverse effects involved with pump use.
K.3. Will you measure my limb above the cuff while using the pump?
Yes: This shows that they are aware of the possible adverse effects of the  pumps and are careful.
No: Try elsewhere: This shows that they are not taking into consideration the basic mechanisms of lymphoedema, nor are they up-to-date with the possible adverse effects of pump use
K.4. What pressure do you set the pump on?
If pressures above 40-50 mm Hg are used then there is the possibility of damage to delicate lymphatic capillaries. This has been shown on a number of occasions in the medical and scientific literature. We would suggest you refuse its usage.
This document was last amended on March 2007