Be An Informed Lymphedema Patient!

Introduction

The Lymph Notes team often receives messages from those who are just starting lymphedema treatment. They do not know what to expect and have no way of judging whether or not they are receiving appropriate treatment.

When you are diagnosed as having lymphedema, you can be your best resource by becoming an informed patient. A major difficulty is that new patients rarely know where to look for this information. The goal of this article is to provide you with guidelines as to where you should look for a reliable source of this information.

Complete Decongestive Therapy

Pilates is beneficial exercise.

Complete Decongestive Therapy (CDT) is the accepted treatment method in the US and consists of the following groups of treatment:

• Manual Lymph Drainage: A gentle massage to remove excess fluid from the affected tissues.
• Compression: Methods of preventing the excess fluid from flowing back into the affected tissues.
• Self-Care: Daily routines to maintain skin and nail health.
• Exercises: Recommended activities to stimulate the flow of lymph, to maintain health, and a sense of well-being. 

At first the therapist performs some of these treatments; however the ultimate goal is to train the patient, or his or her caregiver, to be able to perform these steps without the supervision of a therapist.

NLN Position Papers

The National Lymphedema Network (NLN) has the responsibility of creating “position papers,” which are written by committees of well trained and experienced therapists. The papers state the details of key issues having to do with lymphedema. These position papers are the best source of information as to the standard for quality treatment.

You will find links for these position papers on the right side of the homepage of the National Lymphedema Network website. We recommend that you print these position papers, which are listed below. Then study them and use them as reference materials.

If there is difference between the treatment recommended in the position paper, and that which you are receiving, you should ask your therapist for an explanation. Listen carefully to these answers you are given and then determine if it matches the position paper guidelines.

• Treatment, which is due to be updated in 2009, lists the components that make up the elements of Complete Decongestive Therapy (CDT). Studying this is particularly important because you need to know if your therapist is including these elements in your treatment – and that you are being taught to perform these skills for yourself to perform at home. If you need help, a caregiver should be trained to help you.
  Important information in this position paper is an explanation as to why some treatment methods are not being recommended.
• Training of Lymphedema Therapists, which is due to be updated soon, lists the training requirements to become a Certified Lymphedema Therapist (CLT). It is important that you understand these requirements and are comfortable in asking your therapist if he or she has met these standards. Some individuals, who claim to be trained but are not, can harm patients.
• Lymphedema Risk Reduction Practices, which is updated through 2011, list precautions to reduce the risk of injuries and infections in tissues affected by lymphedema. When such an event should happen, receiving prompt medical care is very important.
• Exercise, which is updated through 2011, explains why exercise is so important in controlling lymphedema swelling, managing to maintain a normal weight, and to aid in general health.
• Air Travel, which is updated through 2011, lists suggestions for safe traveling despite having lymphedema. These precautions apply to those with lymphedema or who are at risk at of developing it.

Lymph Notes Articles and Updates

When you want more information on these topics, go to the Lymph Notes Table of Contents and locate the title of the detailed article that provides valuable additional information about the topic of concern.

How to Judge If Your Treatment is Successful

• Treatment is successful when the swelling is decreasing!
  Treatment is not successful when swelling is increasing.
• Treatment is successful when the tissues remain soft without cecoming fibrotic (hardened)!
  Treatment is not successful when the tissues become fibrotic (harden).
• Treatment is successful when infections occur less frequently!
  Treatment is not successful when infections occur more frequently.
• Treatment is successful when the patient’s quality of life is improving!
  Treatment is not successful when the patient’s quality of life is deteriorating.

When Treatment is Not Helping

When you have reason to believe that the treatment you are receiving is not helping, doing nothing is not an option. You (the patient or your caregiver) and your therapist both have responsibilities to take action so that your treatment is effective.

Self-Management

The starting place should be an honest evaluation by the patient, or caregiver, as to how regularly and completely the self-management program is being carried out between professional treatments.

• Do you, or your caregiver, routinely perform your self-massage as prescribed?
• Do you wear your compression garments regularly and properly?
• Do you complete your exercise program regularly?
• Are you performing appropriate skin care as part of your daily routine?

If compliance in self-management is a problem, it may be necessary to obtain additional training in these skills or to seek help in maintaining the motivation necessary to manage your program successfully.

Professional Care

If the prescribed self-management program is being implemented properly, but the lymphedema is not responding, it is necessary to have your condition reevaluated to determine if changes in your medical condition are causing the problems being experienced.

If there are no changes in your condition to account for the lack of progress, you may need to consider changing to a different therapist. Therapist training is expected to meet the NLN and LANA standards; however, therapists can vary in their approach and sometimes a patient-therapist combination does not work as well as it should.

References

[1] National Lymphedema Network position paper 2011.

[2] Living Well with Lymphedema by A. Ehrlich, MA, A. Vinjé-Harrewijn, PT, CLT-LANA, and E. McMahon, Ph.D. Lymph Notes 2005.

© LymphNotes 2010. This information does not replace the advice of a qualified health care professional.

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Category: How Lymphedema is Treated Updated: 2011-08-02