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Lymphedema is a chronic, progressive condition of swelling in the body. No matter what the cause, lymphedema management includes internationally agreed upon methods that are known as the four pillars of treatment:
Exercise
Compression
Skin care
MLD (manual lymphatic drainage) a specialized form of tissue manipulation
Education is a key 5th element that underlies all the pillars of treatment. Learning that you have lymphedema can be very distressing and, in the beginning, you need information. You need help. Some people are given a list of lymphedema therapists in their region by their doctors, others turn to the internet to find them. Because lymphedema is a life-long condition, once you find a therapist you will most likely be in contact with this therapist for many years to come.
Here are some things you should know about lymphedema therapists and what to look for when finding a therapist.
WHO IS A LYMPHEDEMA THERAPIST?
1. A health professional such as a physiotherapist, registered nurse, occupational therapist, registered massage therapist or other regulated health professional who has taken post-graduate training in lymphedema management. There are varying credentials for this such as CDT (combined decongestive therapy-most used credential), CLT (certified lymphedema therapist) or DLT (decongestive lymphedema therapist) depending on the school attended and will be used as part of their credentials. For example: Jane Smith RN, RMT, CDT.
2. The internationally recognized minimum standard for lymphedema training is 135 hours.
3. Some work in private practices, others in hospital settings or physiotherapy clinics depending on where in the world they are working. At this time most settings are fee-based and not covered under healthcare, but some who have extended health benefits may have coverage.
WHAT IS THE ROLE OF A LYMPHEDEMA THERAPIST?
1. HEALTHCARE NAVIGATOR: Your therapist will be able to help direct you through the initial stages of lymphedema and beyond. They will guide you to get any tests needed, funding available for treatment or compression garments and any other supports needed through referral to other healthcare professionals.
2. YOUR RESOURCE AND TEACHER: From the initial visit going forward, your lymphedema therapist is your go-to for learning about the lymphatic system, how it works, what can cause swelling and how to optimize lymphatic functioning. They will teach and give you all the tools needed to become self-sufficient in the management of your lymphedema based on the four pillars of treatment. In the beginning you will probably rely heavily on them as you learn, but as you become more independent, their role switches to being your resource for questions and, because lymphedema is not a static condition, they are there for you when you need them in the future.
3. YOUR GATEWAY TO NEW INNOVATIONS: Research about lymphedema and the lymphatic system is always evolving and your therapist will be monitoring the research and taking upgrading courses to optimize and personalize your treatment. They will most likely convey this information to you by some means whether verbally at an appointment or by newsletter or blog post. Keeping in contact with their clients this way is vital to ensure that you as the client also stay informed and your treatment is based on up to date research.
4. YOUR CHECK AND BALANCE: You will be taught how to monitor your lymphedema at home by teaching you how to recognize if your compression is working for you, how to measure your limb and how to assess your tissues for changes. When you see your therapist, they will also monitor this and ask you questions about your self- lymphatic drainage routine, exercise and skin care routine or assess your compression garment to make sure it is doing the job it should. Your therapist can make suggestions to tweak your routines and through these questions and assessment can suggest any changes that may be needed.
FINDING A LYMPHEDEMA THERAPIST
Finding a lymphedema therapist can feel overwhelming. You will have a long-term relationship with your therapist and when you reach out to speak with a therapist for the first time it is okay to ask them some questions. However, most people do not know what to ask. Not everyone asks questions, but here are some that I have been asked over the years in that initial phone call to my clinic:
"What training do you have to help me with my swelling?"
" How long have you been doing this (treating people with lymphedema)?"
"How is lymphedema treated?"
"Are your services covered by healthcare?" (Here in Ontario, the majority of lymphedema services are not covered by our healthcare system, OHIP).
"How many visits will I need to come to you for?"
When being interviewed by potential new clients over the phone I did not feel threatened by the questions. It was an opportunity to ask my own questions, get to know this person a little and to let them know who I am and about my approach to lymphedema care.
Before calling a therapist, sit down and make a list of the questions you may want to ask. Some of the questions the therapist may be able to answer over the phone, others may not be able to be answered until after you are assessed by the therapist. Remember, you are at the beginning of your learning path and NO QUESTION IS A SILLY QUESTION.
WHO CAN BE PART OF YOUR LYMPHEDEMA TEAM?
Every situation is different. Members of your lymphedema team may include:
Professionals:
1. Your family doctor
2. Your specialist lymphatic doctor
3. Your oncology team
4. Your lymphedema therapist
5. Your compression garment fitter
6. Registered Dietitian or Holistic Nutritionist
7. Naturopathic Doctor
8. Physiotherapist
Social supports:
1. Lymphedema associations
2. Lymphedema support groups
3. Friends and family members
4. Counselors or social workers
Economic supports:
1. Insurance benefits for compression or treatment
2. Lymphedema associations
3. Local charity clubs (Lions club etc.)
4. State or Provincial funding (compression garments)
Lymphedema does not have a cure yet. Creating a partnership between you and your lymphedema team can help you take control of your lymphedema and live your awesome life.