No cure for lymphedema, but there is treatment plan
PITTSFIELD — Kelly Koperek spent more than a decade struggling with the pain that radiated through her left leg and left foot. She thought it was due to an old injury, something you deal with as you go through life.
Then, four years ago, she bought a pair of women's high dress boots.
"They fit perfectly," she said. "I wore them for about a week. Then I woke up and my foot was swollen up like a balloon."
So, Koperek sought medical treatment. She was given X-rays, and checked for blood clots.
"They didn't find anything," said Koperek, who lives in Lee. "I even went to physical therapy."
This went on for six or seven months. Finally, Koperek was referred to a vein specialist.
"He said your veins are fine, but I've seen this before. You should go to the lymphedema clinic in Pittsfield."
Koperek's story is not unusual.
Len Patnode of Pittsfield, a retired executive at the former KB Toys, tells a similar tale about the swelling in his leg. "I had it for a long time and didn't know what it was." he said. "I went to multiple doctors and no one could put a finger on it."
It was a plastic surgeon who finally suggested that Patnode seek the same type of treatment that Koperek did. Full disclosure — this reporter's wife has sought treatment, too.
Lymphedema is a disease that results from a blockage in a person's lymphatic system. The lymphatic system circulates protein-rich lymph fluid throughout your body, collecting toxins like bacteria, viruses and waste products, and sends them to your lymph nodes where infection-fighting cells known as lymphocytes flush them out of your system. When a person's lymph nodes can no longer drain this fluid properly, it begins to back up in the body. Swelling usually occurs in an arm or a leg, and includes an enlargement of the fingers and toes. In rare cases, it can affect both arms and legs. It has also been known to affect the chest wall, and the abdomen, even the scrotum. In extreme cases, lymphedema can develop into elephantiasis, the enlargement and hardening of limbs or body parts due to tissue swelling.
There are two types of lymphedema. Primary lymphedema can occur on its own. It's rare and often inherited. Secondary lymphedema is caused by another disease or condition that can damage the lymph nodes. Lymphedema is frequently contracted by people who undergo cancer treatment, especially breast cancer patients, because both radiation therapy and surgical treatments can damage the lymph nodes. How many patients struggle with lymphedema after getting cancer is inconsistent, according to research cited by cancercenter.com, but it is widely considered to be a common cancer-related side effect.
"It's a progressive disease," said physical therapist Elizabeth Holbrook, one of five therapists who treat the disease at Berkshire Medical Center's lymphedema clinic, which is located at the hospital's wound center at 66 Charles St. "The fluid amount will increase over time."
There is no cure for lymphedema. It can get progressively worse without treatment. And, as Koperek and Patnode discovered, lymphedema is hard to diagnose.
"The lymph nodes run next to the blood vessels," said physical therapist Bridget von Jeetze, who works with Holbrook at the clinic. "It was always masked by the blood vessels, so it wasn't identified."
Lymphedema is as old as the pyramids — swelling of the extremities is portrayed on hieroglyphics drawn by the ancient Egyptians, and both Hippocrates and the ancient Romans were aware of the disease, according to von Jeetze. But the lymphatic system's closeness to the blood system meant that treatment methods didn't really develop until the 1930s, when medical technology became sophisticated enough to find it. The most common form of confirmation now is through an MRI.
Even so, lymphedema clinics still aren't commonplace. BMC's didn't open until 1998 when physical therapist Patricia Doyle underwent training in Springfield and brought what she learned to the Berkshires, von Jeetze said. BMC's lymphedema clinic receives five referrals a week, or about 260 per year, according to von Jeetze, who was originally recruited to the clinic by Doyle. As of mid-August, the clinic had treated 450 patients in 2019. The clinic typically treats between 600 and 650 patients each year.
There are several treatments for lymphedema, including at least two surgical procedures. But at BMC, therapists treat lymphedema with the Vodder Method Drainage and Combined Decongestive Therapy, a four part-treatment that its founders, French massage therapists and naturopaths Emil and Estrid Vodder, developed in 1932. The program includes a repetitive sequential massage that reduces swelling by stimulating the lymph vessels to draw in more of the lymph fluid, and compression bandages that are used to prevent the re-flow of lymph fluid between treatment sessions, according to the clinic's website. Exercises to help increase lymph flow are given, as are lessons in skin care including cleaning with antibacterial washes, to eliminate bacterial and fungal growth.
Lymphedema patients are also often asked to cut back on salt, because sodium increases fluid retention in the body.
Depending on the severity of the disease, patients normally receive treatment during 60- to 90-minute sessions four or five days week. The entire program lasts between four and eight weeks. Health insurance coverage for lymphedema depends on a patient's insurance plan.
A big part of the treatment is the use of compression bandages, which are used at the outset to help reduce swelling. Patients are initially required to wear them on their effected extremities 23 hours a day.
Bandaging is difficult and takes time to learn, Holbrook said. Patients are encouraged to learn how to do it themselves or find someone who can assist (my wife had me). Koperek said she learned how to bandage herself. Patnode didn't have to.
"Luckily, I'm married to a nurse," Patnode said.
After the treatment program ends, patients return for periodic checkups to assess the progress of the disease. Flareups are common, and some patients need to come back for additional therapy.
Patnode, who was first diagnosed in 2007, is returning to BMC in September for additional treatment. He still wears compression socks, which patients are required to wear once the program ends, but said his wife has noticed "a bit more swelling than she'd like to see," lately in his leg.
"I'm going back to bandaging for two weeks at the end of September," he said. "I haven't had a bandage on for 10 years."
"The key is to follow the direction of the doctor or therapist," Patnode said, when asked how to keep lymphedema in check over the long haul. "A lot of people, from what I understand, stop doing the stuff that they're supposed to do and, of course, they're right back in there."
Koperek, who is also still wearing compression socks. said the treatment program allowed her to use her left foot again.
"There's no cure for it," she said. "But I was absolutely amazed that I could move my foot and get back into my dress boots again."
Tony Dobrowolski can be be reached at firstname.lastname@example.org or 413-496-6224.
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