My Experience - MLD (Manual Lymph Drainage) and Compression Therapy

By Christina Routon

Upon discovering I had lipedema I began researching treatment options. Even though most compression treatment is for lymphadema, most sources I found also recommended it for lipedema. It was worth a shot, and I discovered my local hospital had a lymphadema clinic attached.

My endocrinologist agreed to refer me to the clinic and I set up my consultation for the beginning of October.

During the consultation, I was uncomfortable at first as no one had seen my legs except my husband and me for years. The therapist was understanding and supportive and completely non-judgmental. She took measurements and photos of my legs so we could compare when therapy was over. We set up appointments for the following week, discussed some things I would need during therapy and discussed the cost and insurance coverage. She also confirmed my diagnosis and stated I have Stage One lipedema (although I think I may be more like Stage 1 1/2 or Stage 2).

Changes in Lifestyle and Dress

The biggest change I had to made was in my clothing choices, especially at work. I typically wore slacks. I hadn't worn a dress or skirt in years. With compression bandages from foot to thigh, there was no way I would be able to fit into my slacks. I'd also just bought a new pair of heeled sandals for work. Nope, wouldn't be able to wear them either. So that weekend I headed to my local thrift store where I bought three long skirts and a few tops.

Well, I had to have tops to match the skirts, right? :)

Fears and Concerns

I was concerned about wearing the wraps. I'd just gotten used to myself after a sixty pound weight loss and was feeling pretty good in my body. Now I was told in order to have the therapy I would have to wear skirts and tennis shoes or some type of medical boot since my feet would be wrapped. I was concerned about being out in public and feeling judged in some way. I do have issues with judgement, with wanting to be accepted by others. Since I'd finally lost a lot of weight I was getting compliments and comments, and it felt good. I didn't want to lose any of that. But I knew my health was more important and it would be temporary - about a month until I was measured for compression hose. I'm still working through the judgement issues. It takes time to work through belief systems, words and feelings from the past.

Insurance, Cost, Time

Compression therapy and MLD is expensive and time consuming. You can find a therapist to do the MLD, but most are out-of-pocket expenses and aren't covered by insurance. By using a therapist at the lymphadema clinic, the therapy was considered to be occupational therapy.

If you have insurance, read through your policy. My policy allows up to 30 visits a year for various types of therapy, including occupational therapy. If the policy isn't clear, ask your insurance company if the compression bandages are considered to be durable medical equipment (DME). If so, they may cover a portion of the cost of the bandages. Since I'm bandaged from foot to thigh, I have five compression wraps on each leg. The first visit was $200 with the cost of the wraps. Each successive visit has been $50-$60.

My job provides a flexible spending account as a benefit. This is money pre-taxed for medical use. At the beginning of my plan year, I can choose how much money to put into my flexible account. That money is immediately available for me to use for medical expenses. The amount I've elected is then deducted from each paycheck, pre-tax, and is paid back in this way over the year. The good part about having this account is I was able to use it to pay for the wraps and the visits.

When I started therapy, I went three days a week for two weeks. They do like to start out daily, but I needed to keep the cost down as well as arrange for the time to be gone from work. As therapy progressed and I learned to wrap myself, I was able to lower my visit time to once a week. The visits last about two hours and I'm at work by ten a.m. I was eligible for FMLA (Family Medical Leave Act), so I spoke to my supervisor regarding the appointments and what was needed, the time frame, and how my manner of dress would change, such as the shoes I would have to wear. I didn't have any issues with filing for FMLA, and was granted the time for the appointments. I use my accrued sick time to cover the two hours I'm not at work.

Part 2 coming Monday, 11/19