It starts with swelling.

Maybe you don't notice it at first or dismiss it as temporary, a reaction to injury, infection or stress that you assume will go away as you heal. But then you realize that the swelling is persistent. When you press your finger into your skin, the imprint stays there.

Eventually, you're in significant pain, so you ask your provider to check out the problem.

You may be diagnosed with lymphedema, a condition that develops when a fluid called lymph gets trapped in soft tissues.

Lymph is an important bodily fluid containing proteins and fats that circulates infection-fighting white blood cells as part of the lymphatic system — a lesser-known network of vessels that co-exists with arteries and veins. If lymph can't move properly throughout your body, your risk for infection rises, and you may eventually develop heavy deposits of fat and scar tissue in the affected area of the body that can make it more difficult to move.

Understanding and treatment options for lymphedema used to be limited. But Michigan Medicine's team of lymphedema experts, including occupational therapists, plastic surgeons and others, has been part of a paradigm shift that's seen new treatments, broader insurance coverage and more hope for people with lymphedema develop over the last 10 years.

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"Our philosophy is to make sure you're leading a good-quality life and you're not inhibited in any way," said Nishant Ganesh Kumar, M.D., an integrated plastic surgery resident who has worked to help restructure Michigan Medicine's lymphedema care. "If you are, then you should know the health care system can treat these issues that are preventing you from living a good life."

To that end, here's what you should know about lymphedema and how Michigan Medicine can help address the condition.

1. Different things can cause lymphedema

You can have a genetic predisposition for lymphedema, or it can develop after physical trauma or illness. In the United States, lymphedema's most common cause is cancer treatment.

"You can consider cancer treatment as a kind of trauma to your lymphatic system," said Theodore Kung, M.D., the director of lymphedema surgical services, an associate professor and a plastic surgeon at Michigan Medicine who specializes in breast reconstruction and lymphedema surgery.

Lymphedema is particularly common in those who have had treatment for breast cancer, which commonly involves radiation and/or removal of the lymph nodes. (Lymph nodes filter out bacteria, viruses and other foreign substances and are the part of the lymphatic system.)

2. Lymphedema usually gets worse over time

There are four stages of lymphedema. In the earlier stages of lymphedema, you won't be able to see any changes to your skin yet but might notice mild tingling or a heaviness in your arm or leg. In later stages, the affected area can swell so much that it doesn't fit into shoes or shirts you wear regularly and may limit your movement. If your provider is able to identify lymphedema early on, you'll have the greatest chance of preventing the progression of your disease as well as permanent damage.

3. Lymphedema can be treated in a variety of ways

Compression therapy is a common treatment for early stages of lymphedema. This involves bandages and/or garments that apply controlled pressure to the affected part of your body and help to push the lymph out of the affected area. Certified lymphedema therapists often pair compression therapy with a specific type of massage, called manual lymphatic drainage, as well as stretching, exercise and pumping the lymph out of the soft tissues.

Before the last 10 years or so, lymphedema treatment didn't often go beyond these techniques. Now, though, advances in technology have led to more options, in addition to tested standbys like compression therapy and massage.

"In occupational therapy, we have learned about and use different modalities that can help reduce tissue fibrosis and lymphedema girth," said Katie Rogers, M.S.O.T.R., a certified lymphedema therapist and a Cancer Rehabilitation Program coordinator at Michigan Medicine.

Some examples are photobiomodulation, a form of light therapy that can improve pain and wound healing, and negative pressure devices similar to cupping that can reduce swelling.

Plus,innovative surgeries are now possible.

Now we have extremely powerful microscopes and sutures that are finer than human hair," Kung said. "With that technology and new techniques, we can have a better effect on the lymphatic system and start helping more patients."

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Health care providers have also begun thinking more about quality of life than in the past and incorporating that focus into their work, which has led to more interest in expanding lymphedema care.

"How we deliver health care has changed," Ganesh Kumar said. "We're not only looking at success as treating the disease but also taking into consideration the patient's own expression of whether their day-to-day life will improve."

4. Three types of lmphedema surgery are available

One is called lymphovenous bypass, and it's most useful when parts of your lymphatic system still work. During the procedure, surgeons connect those portions of the lymph channels that are still functioning to nearby veins. That way, your body can literally bypass the part that's blocked and use the vein to return lymph back to the circulation.

The second kind of surgery is called vascularized lymph node transplant or sometimes, vascularized lymph node transfer. This involves harvesting tissue that contains lymph nodes and lymphatic tissue from somewhere else in your body, typically in either the neck, groin, or abdomen and transferring that tissue to the area with lymphedema. That way, the functioning lymph nodes can augment lymphatic return in the affected area.

So far, one of the biggest limitations of lymphedema surgery is that no one can yet predict if a patient will respond positively to either operation.

"Because of this limitation, you will have surgeons who will either perform one or the other lymphatic surgery, or you will have what I call the kitchen sink approach, which is that the surgeon will offer multiple procedures at once," Kung said. "Neither approach is wrong. I present both options to patients, have a very open discussion, and choose whatever fits best with the patient's values."

Lymphovenous bypass is a less invasive operation — Kung compares each of the incisions to taking out a medium-sized mole — and patients generally get to go home the same day, although they'll continue with compression therapy for at least a month afterward. A vascularized lymph node transfer tends to require several days in the hospital to recover. Both operations are more successful in earlier stages of lymphedema.

For later stages, the best surgical option is often removal of skin and/or fat from the area where the lymph has built up. This can be done through liposuction and/or direct removal of the excess soft tissues. This operation reduces the weight of the leg or arm and makes it easier for people to move.

"One of my favorite stories is about a young man who was a little late to his video visit," Kung said. "I logged on, and I was waiting for him, and he said, 'Oh, sorry, I was late because I was out playing basketball.' He was out there playing basketball whereas before his surgery he could barely walk."

"Stories like that really show that liposuction is not a cosmetic surgery for patients that live with lymphedema," Kung added. "It's a functional surgery that can really help these people."

5. Insurance coverage for lymphedema surgery has expanded

Another barrier to lymphedema surgery of any kind: Until recently, health insurance plans frequently did not cover the procedures.

"As a plastic surgeon who performs a lot of reconstruction for breast cancer survivors, it's disheartening to see the difficulty that patients have with insurance companies because in most of these cases the lymphedema is clearly from the breast cancer treatment," Kung said. "Breast cancer reconstruction is mandated by law to be covered by insurance companies, and that includes surgery on the breast that didn't have breast cancer. Therefore it can be very frustrating to see all the denials from insurance companies because lymphedema for these patients came from the necessary breast cancer treatment."

Kung acknowledges much more remains to be learned about lymphedema surgery but says the evidence that it works for some people, even though it's difficult to predict which ones, means that it shouldn't be considered experimental by insurance companies.

To that end, Kung and his colleagues helped convince Blue Cross Blue Shield of Michigan, the state's largest health insurance carrier, to change their policy when it comes to lymphedema surgery. Starting in 2021, Blue Cross Blue Shield now recognizes lymphedema surgery as legitimate as long as it's offered for patients who are good candidates for it and performed by reputable surgeons who are trained in lymphedema surgery.

"This is monumental progress," Kung said. "I think the trend is starting to move in favor of our patients because as insurance companies catch up with the available evidence and the outcomes, more of them will change their policies as well."

6. Educational resources are available for both patients and providers about lymphedema

Michigan Medicine was recently designated as a comprehensive center of excellence by the Lymphatic Education & Research Network in recognition of its ability to provide advanced treatment for lymphedema. The health center joins just 12 other institutions worldwide with this certification and plans on harnessing the resources available from LE&RN to learn from other institutions and educate both its patients and its providers about lymphedema.

"I believe what sets us apart at Michigan Medicine is our genuine goal to achieve the best outcomes for our patients with lymphedema," Rogers said. "As therapists and surgeons, we are strong advocates for our patients and use many resources to make sure our patients get the best treatment possible."

"We have team meetings together frequently to discuss program development and updates in therapy and surgery techniques," she added. "Many of us volunteer our time to educate our community and our colleagues about lymphatic diseases. We are passionate about what we do."