Info on lymphedema therapy:
What is lymphedema therapy? Lymphedema therapy is a form of “decongestive therapy,” which aims to alleviate chronic swelling from lymphedema. Trained therapists stimulate the lymphatic drainage system through “manual lymphatic drainage” massage techniques. Following MLD, therapists often appy compression bandaging to continue stimulating lymphatic drainage.
How does lymphedema therapy improve a CLOVES patient’s symptoms? Lymphedema therapy stimulates and promotes improved lymphatic drainage, which means that MLD therapy should help decrease a patient’s swelling and the pain associated with swelling. For a patient that is experiencing function or motion loss due to swelling or swelling pain, lymphedema therapy can also help a patient maintain or even restore function and movement if swelling and pain improve.
Is lymphedema related to health complications aside from swelling and pain? Yes, many lymphedema patients endure the vicious cycle of lymphedema and cellulitis perpetuating one another. For patients who battle recurrent cellulitis, lymphedema therapy helps treat the damaged lymphatic system from cellulitis. Lymphedema therapy may also help reduce risk or frequency of cellulitis infections by promoting proper lymphatic drainage and alleviating fluid congestion. For my information on the association between lymphedema and cellulitis, as well as the need to treat both interrelated conditions, see this article from he Journal of Lymphoedema: https://www.woundsinternational.com/uploads/resources/content_11173.pdf.
How do I find a lymphedema therapist? Some physical therapists or occupational therapists are certified in lymphedema treatment; however, it is crucial to see a therapist that is qualified as a Certified Lymphedema Therapist. First and foremost, talk with CLOVES patient’s doctors/team about lymphedema therapy and referring the patient to a CLT. Second, you can consult this website to see if there are CLTS near you; however, this site only shows lymphedema therapists that have been certified by LANA (Lymphology Association of North America). There may be qualified and certified therapists near you that simply may not be LANA certified. See: https://www.clt-lana.org/therapists?radius=25&zip=75201.
What is lymphedema and how is related to CLOVES? CLOVES patients tend to have primary lymphedema, meaning their genetic abnormality has caused lymphatic malformations. These lymphatic malformations impact the flow of lymphatic fluid through the impaired lymphatic vessles and nodes. Lymphedema develops due the congestion of lymphatic fluid. Because of the build up of lymphatic fluid, CLOVES patients are at a much higher risk for cellulitis infections.
Important links for further info:
- An article on cellulitis and lymphedema: https://www.woundsinternational.com/uploads/resources/content_11173.pdf
- An article on Manual Lymphatic Drainage: https://www.physio-pedia.com/Manual_Lymphatic_Drainage
- An article on finding a certified lymphedema therapy: https://lymphedivas.com/blog/how-to-find-a-qualified-lymphedema-therapist/
- An academic article on lymphatic anomalies: https://www.jci.org/articles/view/71614
- An academic article on lymphedema and capillary formation: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4778889/
- An article on compression and cellulitis in children: https://vascern.eu/new-dos-and-donts-factsheet-on-childrens-compression-and-cellulitis-flowchart-from-the-ppl-wg-now-available/
Info on lymphatic compression bandaging and garments:
In addition to Manual Lymphatic Drainage therapy, compression garments can help alleviate swelling and pain. Talk to a certified lymphatic therapist about the options, including what your health insurance may and may not help cover. When you’re discussing placing an order for compression garments, make sure to take your deductible and out-of-pocket max into account. You may be able to spend less on compression garments if you have already met your deductible, out-of-pocket maximum, or are toward the end of your insurance cycle. Your lymphatic therapist will be able to look at your health insurance benefits and help decide when and what to order.
When you are conversing with a doctor or therapist about compression garments, keep in mind that garments are a long-term investment. With that said, you do not want to place an order for garments when swelling is at its worst. You will likely want to try to decrease swelling as much as possible through MLD therapy before ordering garments so that your garments fit properly. If you order garments when swelling is at its worst, such as immediately following cellulitis, then your garments will not fit once the swelling improves. Talk with your therapist about the right timing to order garments, seeing as that garments are meant to be long-term.
If compression garments are not an option due to either insurance/payments barriers or the size/shape of the garments needed, then talk with your lymphatic therapist about other forms of compression, such as: 1. short stretch bandaging, which often looks similar to Ace bandages but actually encourage lymphatic drainage because of its short stretch fabric. These bandages look like Ace bandages, but Ace bandages are a long stretch fabric, which means they do not promote lymphatic drainage and are therefore discouraged. One short stretch option in 3M Coban, which may be used either by itself or with padding to provide needed pressure. Medium stretch bandages are sometimes used for lymphedema, though these bandages are typically used above wound dressings or with foam padding beneath. 2. elastic or non-elastic stockinettes, which may be additionally be used under certain types of compression garments. 3. kinesio tape, which is used to increase lymphatic fluid flow. Many lymphedema therapists are trained in proper application of kinesio tape and can educate patients and caregivers on applying tape if Kinesio tape is an option for the patient.
Lymphedema compression garments come in a variety of options, including ready-to-wear garments and custom garments. Every CLOVES patient is different; therefore, the type of garments that would be most helpful for each patient depends on the needs of the patient. Explore the options and talk with a certified therapist about what would be most helpful for the individual CLOVES patient. Because CLOVES patients often have overgrowth or mishappen extremities and digits, ready-to-wear garments may not fit. Therefore, if custom garments are not an option due to financial barriers, discuss the plausibility of adapting or adjusting ready-to-wear garments with your certified therapist. For example, one CLOVES patient with finger syndactyly found that an adjusted (cut and sown) foot garment fit better than a hand garment. Additionally, because of overgrowth, CLOVES patients may find that adjustable velcro garments are preferred over ready-to-wear sleeves. Again, talk with your therapist and compression garment represenatives about creative options and solutions.
Discuss garment options with a therapist that can look at your insurance benefits and help decide which garments will be best. Though you can purchase garments from some retailers without a prescription, a doctor will usually have to write a prescription for compression garments from lymphedema speciality retailers, which is why it is crucial to work with a therapist who will assist you with this process. If you want to see the types of garment options that are available, visit these links:
https://www.lymphedemaproducts.com/ https://www.jobst-usa.com/products.html
https://www.mediusa.com/product-category/compression/ https://www.sigvaris.com/en-us
Additional compression options to ask about:
Depending upon your health insurance and what your insurance will cover or assist you in paying, you may consider asking about purchasing a pump that will perform MLD therapy for the CLOVES patients. These pumps go by various names, such as pneumatic compression pump, lymphedema pump, or simpy edema pump. A doctor or therapist may suggest utilizing a pump at home either in the place of or in addition to MLD therapy by a therapist.
If the patient’s health insurance will only cover a certain number of treatment visits with a certified therapist, then a pump may be a good option for lymphedema therapy at home once the patients has reached the maximum number of approved visits. The patient will be able to continue lymphatic therapy at home as the pump moves lymphatic fluid and stimulates lymphatic drainage. Lymphatic pumps use air pressure to gently massage the part of the body with lymphedema and stimulate fluid movements.
In addition to the pump itself, the patient will need attachments or garments that fit over the parts of the body that are in need of lymphatic drainage therapy. Companies such as Tactile Medical have attachments/garments for the trunk, head/neck, lower extremities, and upper extremities. Once a patient has the pump, attachments can be purchased and used as needed. The pump supports all of the attachments. With that said, there are several companies that have lymphatic drainage pumps, so talk with a certified therapist about which company, pump, and attachments are right for the patient. Additionally, for maximum lymphatic drainage support, the therapist may suggest using multiple attachments in order to promote proper fluid movement through the entire body.
A term you may hear a doctor or therapist say is “complete decongestive therapy” (CDT). This term refers to an intense program of two phases: intensive phase and maintence phase. In these phases, a doctor or therapist will combine bandaging, compression garments, MLD therapy, exercise, and good hygiene/self-care, such as skin care and learning to perform MLD therapy at home. CDT may not be recommended for patients that have acute infections, blood clots, paralysis, high blood pressure, and/or other conditions. For more information on CDT, you can visit this link: https://www.physio-pedia.com/Complete_Decongestive_Therapy_(CDT)
Talk with the patient’s doctors or therapist about forms of exercise that can promote lymphatic drainage by strengthening the lymphatic system. Many of these exercises involves stretching or contracting and relaxing the muscles. An exercise plan may also include aerobic exercises, such as swimming, cycling, walking, and possibly yoga. Again, talk with a certified therapist and develop an individualized plan that works well for the patient.
Thank you to Family Advisory Council member Lindsey Johnson Edwards for her work on this resource.