Lymphedema is a chronic condition that affects millions of people around the world. It requires consistent and ongoing management and treatment to avoid the condition’s progression and minimize symptoms and side effects. Individuals will need to work closely with a healthcare provider and certified lymphedema therapist (CLT) to develop a long-term treatment plan that is individualized for them.
One of the most effective treatment options for lymphedema is Complete Decongestive Therapy (CDT). This includes compression therapy, manual lymphatic drainage (MLD), exercises, skincare, and self-care. In this blog post, we will walk through the process of seeing a lymphedema therapist to receive treatment. We will explain the steps involved, what someone can expect, and what to look for when seeking a CLT.
Where to Start
When someone has any signs or symptoms of lymphedema, such as swelling in the arms or legs, starting with a primary care doctor or consulting with a specialized healthcare provider is the first step. It’s important to note that the diagnosis of lymphedema may not be straightforward because there are many different conditions that can cause swelling or other symptoms similar to lymphedema. The doctor will typically review a patient’s medical history, perform a physical examination, and do further imaging tests to help diagnose lymphedema and rule out other conditions.
When a doctor reviews a patient’s medical history, they look for other conditions that may place someone at risk for lymphedema, such as cancer with surgery or radiation and genetic disorders. To help rule out other causes of the signs and symptoms someone may have, the doctor will also look for other organ diagnoses like kidney or heart failure. In a physical exam, the doctor will examine the areas that are swollen, look for skin changes, and assess for other tissue changes. Lastly, the doctor may order imaging tests, such as a lymphoscintigraphy scan, which can show the flow of lymphatic fluid through the lymphatics and localize any areas where there may be a dysfunction or function issue that would assist in diagnosing someone with lymphedema.
When and How to See a CLT
The doctor may send a referral to a CLT for further evaluation and treatment if an individual is diagnosed with lymphedema. Someone does not always need to wait until swelling is present to see a CLT. If an individual is at risk of developing lymphedema, then seeing a CLT would be beneficial to learn about prevention and early intervention techniques. Some examples of who is at risk would be after one undergoes lymph node removal surgery for cancer or has an injury with significant trauma to an area.
The local doctor may know or work closely with a therapist in the area to find a certified lymphedema therapist. If not, various training schools list their certified therapists on their websites. An organization such as the Lymphology Association of North America (LANA) is the highest-level certification program. It provides the ability to search your area and state for highly-qualified therapists. Other training schools to explore include:
Once a CLT is found, the next step is to contact the therapist’s office or clinic to schedule an evaluation and initial appointment. In the US, it’s essential to check with the insurance provider before understanding if this therapist is in the network for coverage and the patient’s financial responsibility, like a co-pay or deductible. Some insurances also require prior authorizations, along with a doctor’s referral, before being able to move forward to see a therapist. Although a clinic may assist in this process, doing due diligence to confirm insurance coverage, understand benefits, and verify financial costs is important to avoid unwanted surprises. Once this is completed and the appointment is scheduled, then next comes the first session.
What to Expect in a Therapy Session
At the initial evaluation and appointment, the therapist will perform a comprehensive assessment, including a skin and tissue assessment, and measure the limb or area of the affected body. The tool a therapist measures may vary. Most commonly, one may use a tape measurement and take circumferential measurements at multiple locations around the limb or area. They may also use a water displacement or a bioelectrical machine for volume measurements. For areas of the body that may be more difficult to measure, such as the breast or pelvic region, the therapist may include other assessment tools to obtain a baseline and know where the swelling volume is starting. For skin and tissue health, the therapist is looking to palpate and feel for any thickening, hardening, skin breakdown, wounds, and overall health of the tissue. This may help stage the level or severity of lymphedema and guide the decision on which type of compression and treatment one needs.
Based on the evaluation and assessment, the therapist will work with the patient to develop a treatment plan, which will start once scheduled with consistency. This is likely to include CDT with phase 1 and phase two treatment.
Phase 1: The Reduction Phase
The first phase of CDT is the reduction phase. It ranges from 2-5 sessions of therapy a week and averages 3-4 weeks in duration. This phase aims to reduce the volume and decrease the swelling while softening any thickened tissue, called fibrosis. This phase is likely to include some of the following:
- Manual Lymphatic Drainage – MLD is a gentle massage technique that helps to move lymphatic fluid out of the affected area or region. The therapist does this technique in a specific sequence to stimulate the lymph nodes and move lymph fluid through the lymphatic vessels. The therapist may also spend time with semi-firmer techniques to soften fibrosis to improve lymphatic flow.
- Compression Bandaging – Short-stretch bandages are a specific type used for reducing fluid. These are different from an ACE bandage one may find at a drugstore, as those are considered long stretch and are more likely to cause a tourniquet or skin issues. Various foams and paddings are used under the bandages for skin safety and to add layers for more effective compression and reduction. There are many options on the market, and a therapist may trial different types and layers throughout phase 1 based on how someone’s tissue and skin respond.
- Exercise – The therapist will teach the patient exercises that are specific to lymphedema and allow the individual to be successful, safe, and consistent. The goal is to find healthy ways to move and activate the muscles, which assist in pumping lymphatic fluid in the body. If able, it will likely be prescribed to complete exercises while wearing compression bandages.
- Skin Care – During the evaluation, the therapist assesses one’s skin and tissue health and will provide education on ways to help prevent infection and maintain strong skin integrity to avoid skin breakdown or wounds. Lymphedema may increase the risk for infection, and the quickest way to obtain an infection is through an opening in the skin, making this an essential piece of lymphedema therapy.
The CDT will be different for each person and should be tailored to each person’s individual and medical needs. Additional types of treatment may be included to assist in reducing the volume of the limb or body area. The therapist will continue to monitor and reassess the swelling and tissue with physical examinations and measurements taken every 1-2 weeks. Once the volumes and measures reduce and reach a plateau, it’s time to transition to phase 2 of CDT.
Phase 2: The Maintenance Phase
The second phase of CDT is the maintenance phase. This phase starts at the end of phase 1 and continues long-term. The goal of this phase is to maintain the reduced volumes obtained in phase 1 with a focus on self-management. This phase may include the following:
- Self-Manual Lymphatic Drainage – Self-MLD is taught by the therapist, using the same gentle massage technique to stimulate the lymph nodes and move lymph fluid through the lymphatic vessels. This is encouraged to be done daily.
- Compression Garments – Although bandaging is an option for managing lymphedema, it could be better due to being bulky and making it difficult to move around and function. Instead, a therapist will help find the best compression garment for the patient. Compression garments are maintenance garments as they help contain fluid from building up. There are garments for the daytime as well as nighttime options. For the day, garments may be off-the-shelf and come in standard sizes. These are best for those with mild lymphedema only. For more moderate or severe lymphedema, a custom compression garment with a flat-knit fabric will be considered. At night, one may choose to continue with self-bandaging or order a night garment that can also be off-the-shelf or customized. There are many different garments on the market with various fabrics and levels of compression. An experienced therapist will help recommend a proper style and kind, but each person responds differently and may need to try multiple garments before finding one that works best.
- Exercise – The patient will be encouraged to continue with the exercises that the therapist taught them and will also want to continue to find different kinds of activities that are enjoyable and that they can be consistent with. Routine exercise is essential not only for lymphedema but also for overall health.
- Skin Care – Self-skin checks should be done daily or multiple times weekly to look for scratches, cuts, or openings. If any are found, it’s important to care for these to lower the risk of infection. If any skin or new tissue changes are found, along with any signs or symptoms of infection, it’s crucial to seek medical attention.
- Pneumatic Compression Pumps – If long-term management needs to be very consistent due to the nature of the lymphedema, then a therapist may assist the patient in obtaining a pneumatic compression pump and device. Pneumatic compression pumps are medical devices with wearable sleeves with chambers inside. These chambers fill with air to create a comfortable compression and fill and empty in a sequential sequence similar to MLD.
The pumps are often worn for about 1 hour a day to help take the place of MLD and work to reduce any increase in fluid or swelling. You can learn more about AIROS compression pumps and garments on this website.The second phase of CDT will also vary for each person and will change and evolve based on changes in one’s condition. During this phase, one will likely follow up periodically with their therapist to continue to monitor and assess for any changes. If needed for a flare-up or progressions, a patient may return to phase 1 as a form of a “tune-up” to assist in re-reducing any increased swelling or softening fibrotic tissue.
After someone has completed lymphedema therapy, they will continue semi-independently with phase 2 CDT. As mentioned, it’s important that the patient returns for follow-up appointments to monitor their progress and make any necessary adjustments to the treatment plan and home program. For some, this may be every 3-6 months, while others may wait 1-2 years. This will vary and depend on the severity of the lymphedema and someone’s overall health. The patient must follow the therapist’s recommendations and practice self-care techniques at home to help manage their lymphedema. With proper treatment and self-care, patients can often effectively manage their lymphedema and improve function and quality of life.
The process of seeing a lymphedema therapist may be simple or complex depending on access in the local area, transportation, and other burdens like finances. The patient can expect to go through a series of steps, including being diagnosed, finding a CLT, going through an exam and assessment, and being treated with CDT. Throughout this process, one can expect to have differences not spoken about in this blog, as a therapist will and should tailor the treatment plan to their individual needs.