Yesterday, the National Lymphedema Network (NLN) hosted its first ever #LymphChat on Twitter to discuss treatment and surgical options for people with lymphedema. Special guests Nicole Stout and Dr. Jay Granzow led the discussion covering Complete Decongestive Therapy (CDT), compression garments and other treatment options. Nicole Stout is a lymphedema therapist, researcher and NLN board member. Dr. Jay Granzow is a microsurgeon who specializes in the surgical treatment of lymphedema, including Lymphatic Venous Anastomosis (LVA), Vascularized Lymph Node Transfer (VLNT), Suction-Assisted Protein Lipectomy (SAPL) and more. This chat provided great insight as people shared their lymphedema experiences, questions and management tips.
The first topic covered the components of Complete Decongestive Therapy (CDT), which is the most common non-invasive lymphedema treatment. CDT is the first thing that the National Lymphedema Network recommends. Overall, a lot of people found CDT to be effective but difficult. Nicole Stout noted that using compression garments and taking good care of yourself can reduce the number of sessions needed. “CDT has many components and requires intervention from a skilled therapist. After treatment, patients keep up with CDT on their own,” she added. Complete Decongestive Therapy has four components: Manual Lymph Drainage (MLD), compression bandaging, skin care and exercise.
Manual Lymph Drainage is a big part of lymphedema care. It is very time consuming, but can make patients feel a lot better. Depending on the patient, some do their MLD routinely, others use pumps at home, and some don’t practice MLD at all. Using compression garments and pump therapy are very beneficial, as well as practicing deep breathing to help stimulate the lymphatic system. Check out this video on manual lymphatic drainage for more information. Remember to stay hydrated before and after MLD to avoid feeling sick or tired.
There are a lot of compression options you can use to manage lymphedema, including elastic/day garments, bandages and bandage alternatives. One #LymphChat participant shared that a custom Juzo armsleeve and glove work well during the day, and wears the JoViPak armsleeve at night. Compression armsleeves help to prevent and treat lymphedema in the arm, but brands like Juzo, JoViPak, and Solaris offer compression garments to treat lymphedema in other body parts – including the legs and trunk area. BrightLife Direct offers tons of brands, colors and compression levels to choose from so you can find the perfect garment for you.
Skin care is also extremely important for Complete Decongestive Therapy and preventing infections. You can also wear silver liners, or compression stockings that are made with silver to fight off bacteria and prevent infections. During the day, you can use Medi Day Gel to moisturize your skin. Apply it before you put on your compression garment to make it easier to don. Don’t worry, this gel will not damage your garments like other lotions may. Some moisturizers break down the material due to the lycra in the garment and reduce its effectiveness and breathability, so make sure you use a garment-friendly gel! Medi Day Gel quickly absorbs into your skin to avoid sticky or greasy residue. At night, you can sooth your legs with Medi Night Creme. It also helps to treat venous insufficiency.
The last component of CDT is exercising, which helps to stimulate the lymphatic system. Lymphedema patient, Amy Santiago says that opening up the Lymph channels (neck/collar, armpits, stomach and breathing) help her before starting cardio or training. One way to open up these channels before exercising is with Manual Lymphatic Drainage (MLD). Swimming, yoga and snowshoeing are all great exercises for lymphedema patients.
Towards the end of the #LymphChat, participants discussed surgical treatments for Lymphedema. According to Dr. Jay Granzow, Suction-Assisted Protein Lipectomy (SAPL), Lymphatic Venous Anastomosis (LVA) and Vascularized Lymph Node Transfer (VLNT) are the most effective lymphedema surgeries. SAPL greatly reduces excess volume in chronic lymphedema patients, and is generally performed in later cases when solids accumulate in the leg or arm. Frequently after SAPL, the use of a compression garment allows you to significantly cut down on CDT, or eliminates the need for it altogether. Other patients, usually in the earlier stages of lymphedema, undergo LVA and VLNT due to excess fluid buildup. You can also combine VLNT and LVA after healing from SAPL to treat solid and fluid components. Compression therapy after these procedures are vital.
Dr. Jay Granzow believes that depending on the patient, each type of surgery can be a success, based on the stage they’re in. As Nicole pointed out, “not just any surgeon can perform these surgeries. Special expertise is needed.” There is a limited number of surgeons that are trained in lymphedema surgery. Although most of Dr. Jay Granzow’s patients have had their surgeries covered by insurance, it depends on your insurance plan. To determine if you qualify for surgery, see a surgeon that specializes in these treatments for an evaluation, as well as a lymphedema therapist to figure out what the best treatment options are for you. Click here for more information on SAPL, VLNT and LVA procedures.
On the first Tuesday of every month, the National Lymphedema Network will continue to host a Twitter Chat, so make sure you follow them on Twitter at @lymphnet and include #lymphchat in your tweets to participate! If you think of any other questions that you would like to ask, email firstname.lastname@example.org. The next Twitter Chat will be on Tuesday, May 5th, 2015 about lymphedema and exercise. Don’t miss it!
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