Living with Lymphedema & Lipedema Part I: The Dual Diagnosis

Written by Jennifer Levin

When I was in the hospital after surgery, I knew something was wrong. I told the professionals my neck hurt.

“You’ve just had your thyroid removed—you are going to feel a lot of sensations,” they said.

I’d always had neck and back pain as well as headaches, so I trusted that they knew what they were talking about and that I would start to feel better sometime during the 10-week recovery period. Sixteen months later, when an oncologist finally referred me to a lymphedema therapist for manual lymphatic drainage, I could barely hold my head up or turn it without pain.

I was tired all the time, having terrible brain fog on a daily basis, and every chronic problem I’d had before cancer seemed to have gotten worse—from neck pain, headaches, and digestive troubles to skin issues and anxiety. My face had essentially frozen into a grimace. In photos, though I know I was smiling when the picture was taken, I always seemed to be sneering at the camera, my mouth turning up on one side only. I exercised regularly but I couldn’t really work up a sweat without feeling ill, and every time I tried to step-up my exercise in other ways, I threw something out of whack. I kept gaining weight and could not figure out why, as I am what any doctor would call a healthy eater. I’d survived stage 4 cancer, but somehow, I was sicker and in more pain than ever before.

And then I had my first manual lymphatic drainage (MLD) session at St. Vincent Sports Medicine with Dean Benjamin. Afterwards my neck, which had felt as though it had been filled with hot, hardening glue for as long as I could remember, felt—well—less terrible. Deana explained that having so many lymph nodes removed during surgery and having I131 radiation were both risk factors for developing head and neck lymphedema after thyroid cancer, as was having cancer in the first place. Lymphedema is a failure of the lymphatic system to properly move fluid, which causes swelling and buildup in the tissues, and the longer it goes without treatment the harder it is to get under control. And I was pretty far down the road. I’d developed an enormous amount of scar tissue, some of which was visible from the outside and which complicated the lymph-drainage issue. Deana’s strategy for my MLD was to go deep into the dysfunction, which she told me some people find painful. I found the process enjoyable and productive, the pain worthwhile.

***

About a month into my twice-weekly treatment for lymphedema in my head and neck, I asked Deana about some chronic pain issues in my lower legs, which burned whenever I walked. It had been a problem for decades and had never been treated or diagnosed to any satisfaction. My legs were also on the thick, large side…and getting bigger.

She examined my legs carefully, with what seemed to be a growing sense of having figured something out. “Can I see your ankles?” she asked. And then “Are other women in your family built the same way you are?”

She told me that I had a condition called lipedema, which affects about 11% of American women but is rarely diagnosed. Lipedema is technically considered a rare adipose disorder but it affects lymphatic function. The basic approach to management is MLD, the same as for lymphedema. Deana also told me that lipedema is “lymphedema waiting to happen” should the right circumstances—like cancer surgery and radiation—present themselves. She sent me home that day with only one instruction, which was to do an image search for lipedema.

“Just look at some pictures and we’ll talk next week,” she said.

Next: Compression, Self-MLD, and Machines that Do it For You