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Highlights of Finding a Qualified Lymphedema Therapist Page

Who's qualified to treat lymphedema?

How do you find a well-trained therapist?

A List of Questions to ask your Therapist Before Treatment

What should a therapist do about your lymphedema?

Evaluation

Complete Decongestive Therapy

Other Treatment Options

What if your therapist isn't doing these things?

Therapists are people too

 

 

 

 

 

FINDING A QUALIFIED LYMPHEDEMA THERAPIST

Being breast cancer veterans, we're used to seeing specialists for every aspect of our care. Most of us aren't medical professionals,  so we depend on our referring doctors and on the licensing standards that the government has put in place to assure us that the specialists who treat us are adequately trained and experienced. So it's surprising – and daunting – to discover that the quality of care we receive for our lymphedema may depend in large part on how much we know about what that care should include, and on our own insistence on receiving it. 

WHO'S QUALIFIED TO TREAT LYMPHEDEMA?

The specialist to see for lymphedema treatment is a well-trained lymphedema therapist. In many parts of the world (including the U.S.) there are no mandated training standards for lymphedema therapists, so anyone with physical therapy or occupational therapy certification can set up shop as a lymphedema therapist with little or no specific training in the pathology or treatment of lymphedema.

Since this lack of standardized qualifications and training  can seriously affect the outcome of your treatment, a licensing organization called the Lymphology Association of North America (LANA) has stepped in and set up standards and a testing system to certify a minimum level of training, knowledge and experience. These standards are endorsed by the National Lymphedema Network (NLN) as well.

For now, though, the LANA standards are strictly voluntary, so you'll want to be sure that any lymphedema therapist you see meets those standards. Call before you go and ask about their training and LANA certification.

According to LANA and the NLN, the minimum requirements for a lymphedema therapist are at least 135 hours of specifically lymphedema training beyond his or her certification as a physical therapist or occupational therapist. (Massage therapists, nurses and doctors can also take the training and become LANA certified lymphedema therapists, but Medicare does not currently cover their services). One-third of those training hours should be spent in the classroom learning about how the lymphatic system works and what to do about it, and the other two thirds in the lab, doing the intensive hands-on work of learning to move sluggish lymph fluid on lymphedema patients.

Additional requirements for LANA certification include at least a year's experience treating lymphedema patients, and recertification every six years by completing at least 24 hours of on-going lymphedema training.

One more note, to help you avoid confusion: Therapist's may call themselves "certified," but that may only mean they've been graduated from a short lymphedema course of a few days or a week. Don't assume that the doctor who refers you for treatment will know what the LANA standards are, or whether the therapist s/he refers you to has met them. Check it out yourself to be sure any therapist you're referred to meets the LANA training and practice standards.

Please do your homework and make sure you are dealing the a LANA certified, appropriately trained lymphedema therapist, and be sure to ask our List of Questions to ask your Therapist before Treatment.

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HOW DO YOU FIND A WELL-TRAINED THERAPIST?

There are several on-line resources to help you find a therapist in your area who has the recommended training.

The LANA web site lists therapists in the U.S. and Canada.

The National Lymphedema Network also has a therapist locater guide.

The Therapist Locator at My Lymphadema also lists additional links to locating therapists in many parts of the world.  Click on the Locator and follow all the links. Some will give you results online, others ask for your zip code and email address and will promptly send you names of nearby therapists. Most of the links provide international listings.

Another place to find a qualified lymphedema therapist is  provided by Academy of Lymphatic Studies.

MLD-UK, a professional association of lymphedema therapists in the UK and Eire, offers a listing for those countries and a few others as well.

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A List of Questions to ask your Therapist Before Treatment

1) How many hours of specifically lymphedema training do you have and from where did you receive your training?

2) Do you take continuing education courses?

3) Are you aware of the standards for therapist training established by the Lymphology Association of North America (LANA), and do you meet those standards?

4) How much of your practice is devoted to lymphedema?

5) How do you handle fitting and purchasing of Durable Medical Equipment (sleeves, gloves, compression bras, night garments)?

6) Can we discuss what your treatment plan is for me, and how it compares to the National Lymphedema Network's position paper on Treatment?

7) How will my visits be scheduled?

8) Will you be available for maintenance visits as well as acute care? How may I contact you when questions arise?

Be sure to ask about any special circumstances you face, such as living far from the therapist's office, having no help at home, or limitations to self-massage and self-bandaging due to arthritis or neuropathy.

Any reasonable therapist should welcome the opportunity to go over those points with you.

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WHAT SHOULD A THERAPIST DO ABOUT YOUR LYMPHEDEMA?

So, you've found a well-trained therapist, gotten the referral from any member of your healthcare team, and made the appointment. Here are some things you should expect from lymphedema therapy.  The National Lymphedema Network also offers a Position Paper on Treatment that can guide you in knowing what to expect. (Therapists can be either male or female, but since most are women we'll use the feminine pronouns to refer to them.)

Evaluation

Your therapist will use information about your medical history, a physical examination, and arm measurements to help her determine what your specific treatment needs will be. She should be able to tell you about the stage and condition of your lymphedema, what her treatment plan is, and how it will be scheduled. (You may be surprised to discover areas of swelling you were not aware of, since lymphedema can be hard to judge by sight alone.) She should discuss with you other areas of treatment she will be working on, including any wounds, scar adhesions, radiation fibrosis, or range of motion limitations.

You and your therapist should agree on treatment goals that include decreasing swelling, improving lymph drainage, restoring tissue softness and skin condition, relieving lymphedema-related pain and movement limitations, and teaching you the skills needed to maintain good self-control.

Measuring will be done again at intervals during therapy, and the therapist should be able to tell you the amount of volume reduction. You may also want to review your treatment goals together from time to time and make any adjustments you feel are needed.

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Complete Decongestive Therapy – CDT

(also known as Complete Decongestive Physiotherapy – CDP)

Lymphedema treatment is known as Complete Decongestive Therapy. It involves daily sessions, four or five days a week for two or more weeks, and includes all the following:

  • Manual Lymph Drainage (a gentle lymphatic massage) and compression bandaging (wrapping in layered short-stretch bandages) should be done at each visit by the therapist, not by you. In the end, though she needs to teach you to do these yourself, as tools to help you maintain the reduction in your arm or breast/chest.  Very early stage lymphedema may not require bandaging, but you should insist on beings taught to do the self lymph drainage massage. While some deep massage may be necessary to release scarring and fibrosis, lymph massage should be as gentle as petting a kitten, barely moving the skin. It should not cause discomfort, redness, or additional swelling.

  • Compression bandaging should not be so tight that it causes your fingers to tingle or feel cold, or discolor.

  • Exercises, which you'll need to do while wrapped as a way of promoting lymph drainage, should be simple and gentle. They should not stress or tire your arm, though they will probably seem awkward due to the stiffness of the layered bandages.

  • Skin and nail care is important for preventing infection. Your therapist should discuss strategies for maintaining your skin and nails safely, including lotion brands and ingredients that can be used with compression garments.

  • Patient Education and Self-Management is an important aspect of therapy. Your therapist should have the patience to answer your questions, repeat instructions and procedures until you gain a comfortable grasp of them, and allow a friend or loved one to learn along with you. Providing you with written materials about each aspect of treatment is crucial to helping you review and remember all the details when you're finally on your own.

  • Compression garments are essential for maintaining the fluid reduction. When the swelling is adequately reduced, or a temporary plateau reached, your therapist should fit you for garments or refer you to an experienced fitter. You should return to your therapist for a check on the fit of compression garments when you receive them.

  • How to Cope is key to continuing self-care, especially with a condition that demands attention throughout the day. Your therapist should be able to offer practical tips for coping with the day-to-day demands of lymphedema, as well as an attitude that encourages, rather than demands, successful self care.

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Other Treatment Options

There are currently two other treatment options that are not part of Complete Decongestive Therapy but are generally accepted (with some qualifications) as adjuncts to lymphedema therapy.

  • Pumps (also referred to as Intermittent Pneumatic Compression or Pressotherapy) have been used as standard treatment in the past, but poor results coupled with a growing understanding of the mechanics of the lymph system have made pump use suspect. As a result of that new understanding, newer versions of this old therapy stand-by have been developed that operate in a way that corresponds to the movements of Manual Lymph Drainage (one popular example is the Flexitouch). A devise such as the Flexitouch is not a substitute for Manual Lymph Drainage performed by a lymphedema therapist, but it may have its place for certain patients. If your therapist uses a pump as part of your treatment or recommends one to you for home use, be sure to discuss with her the specific reasons why she thinks it appropriate for you. 

  • Kinesio taping is a recent addition to lymphedema therapy that is quickly gaining credibility among therapists trained in its application. If you and your therapist agree to try it, be sure she tests it on a part of your body that is not at risk for lymphedema before applying it to any affected area. Skin reactions and adhesive allergies can create an infection risk.

Besides pumps and Kinesio taping, there are a variety of other treatment ideas that some therapists use or recommend. Some – like the Acuscope, Gas Ionization Lymph Drainage XP tuning forks, magnets, and some herbals – fall into the category of alternative treatments. Others – including the laser, surgical interventions like anastomosis and node transplant, and prescription drugs – can be considered experimental, without sufficient research as yet to evaluate their long-term effectiveness or safety. Before agreeing to interventions like these, you will want to ask questions and do your own background research.

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WHAT IF YOUR THERAPIST ISN'T DOING THESE THINGS?

We hire these people, so we should feel comfortable asking about anything we don't understand. If the answers aren't there, it's time to find someone new. Lymphedema therapists operate as free agents in their practice, often supervised by other physical therapists who have no training in lymphedema therapy themselves. Like anyone else, they can get sloppy, or stubborn, or overworked – and they can take shortcuts. Those shortcuts can put us at risk for lymphedema progression or serious infection, so we can't afford to be afraid to ask tough questions or find a new therapist.

The relationship with our lymphedema therapists is a long-term one. We need to feel comfortable calling them in an emergency, picking up with visits if our swelling should flare, or checking out new developments in the lymphedema field. If the thought of contacting your therapist makes you anxious or hesitant, consider looking around for someone else.

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THERAPISTS ARE PEOPLE TOO.

There are things we can do to help them. When you find promising new research or lymphedema products, pass that information along to your therapist. Write a thank you note for the many extra, generous things she does, and send a letter of commendation to the local chapter of her professional organization. Next time you have an appointment with your referring doctor, be sure to tell her or him about your experience.

You're in a unique position to encourage her in the things she does best. Try not to expect her to solve all your lymphedema problems instantly (though that's not easy!) Drop her a note from time to time to tell her you're doing well, or that something she suggested is working. Your thoughtfulness will not only strengthen your relationship – it may even go a long way toward assuring she'll be there for others as well.

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Page Last Modified 02/24/2014

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