When Liz's husband got sick, she became his primary caregiver. After his hospital discharge, she helped him with all his activities of daily living. Her husband passed away about three years ago, but all the lifting and moving exacerbated her arthritis, especially in her knees.
In March 2019, she decided to get a total knee replacement, expecting the recovery to take a few months before getting back to normal. But her knee never seemed to heal completely. The swelling never went down — in fact, it got worse. Her surgeon said it was normal to have some swelling, even several weeks and months after the surgery. She waited and hoped it would get better.
A year later, she was frustrated that her doctors weren't as concerned about the swelling and pain as she was. Liz researched knee surgery online and saw many total knee replacement patients whose legs looked much better than hers. She wore compression stockings as instructed, and even switched to a heavier compression to try to reduce the swelling. But her knee kept getting bigger, heavier, and harder to move. She started wearing skirts all the time because her pant legs were too tight, and had to skip activities that required extensive standing or walking.
"It's exhausting," Liz said. "It feels like dragging a tree trunk around. It's hard to explain to people who have never experienced it. They think you're just being melodramatic."
Then, one morning, Liz was watching a local morning show host interviewing Fatma Tuncer, MD, a plastic surgeon at University of Utah Health. They were discussing lymphedema (in breast cancer patients specifically), but to Liz the symptoms sounded very familiar.
Lymphedema is swelling in the arms or legs when lymph fluids collect in that area. Swelling in the arms is more common in women who have lymph nodes removed under the arm after breast cancer surgery or damaged from radiation treatment. Swelling in the legs is more common in men who have lymph nodes removed or damaged in the groin area after prostate surgery. But swelling can occur in other areas if the lymph nodes are not working properly because of tumors, genetics, or some other unknown reason. Lymphedema can also occur after melanoma in both men and women.
"We have a lymphatic system in our bodies in addition to the circulatory system," Tuncer said. "The circulatory system moves blood. The lymphatic system moves fluids or remnants from the main circulatory system."
The lymphatic system is critically important, but it's not something that many surgeons and physicians are aware of. Most medical education only touches briefly on the lymphatic system. Lymphatic vessels are very tiny, between 0.3 and 0.4 millimeters, and they have no color, so surgeons would not even see them during most procedures.
Unfortunately, lymphedema is becoming more common as a side effect after cancer surgery. Surgeons can remove lymph nodes they know or suspect are infected with cancer cells, reducing the risk that cancer will spread, or metastasize, and increasing survival rates. But if patients are not warned about the risks and symptoms of lymphedema, they may not get a diagnosis and proper treatment in time.
"Lymphedema can become permanent after cancer, and it's not possible to reverse it after it reaches a certain point," Tuncer said. An early diagnosis is important when doctors have several options to manage swelling and drain the fluid.
Liz called Tuncer's office. She didn't know if she had lymphedema, only that her symptoms sounded similar, and it was worth a shot. During her first visit in January 2021, Tuncer did a physical exam to look at Liz's leg. She had all the symptoms, but getting lymphedema after a knee replacement surgery is rare.
Next, Tuncer did a diagnostic test called an ICG lymphography. She injected a dye that can only travel through the lymphatic system. Then she used an infrared camera to watch the dye travel up Liz's leg in real-time. Together, they could see the dye collect in several spots below the knee, indicating a blockage.
Insurance requirements specify that patients must first try non-surgical treatment. That includes lymphatic massage, where a therapist massages the area to try and help the lymph system drain fluid out of the arms or legs through other (non-damaged) lymph nodes nearby. Another nonsurgical treatment is tight compression garments that force fluid out of the area. Neither massage nor compression will make lymphedema go away completely, but it can manage symptoms so someone with a milder case doesn't need surgery.
For Liz, these two options still did not provide the relief she needed. In a March 2021 follow-up visit, Tuncer decided to try a lymphatic bypass surgery. Liz continued the massage and compression treatments while seeking insurance approval for the procedure, which is still new. Only a small number of surgeons in the U.S. perform it.
Liz got approval and went in for surgery on June 2. The procedure is "superficial," meaning that it doesn't involve any major organs or structures. But because the lymphatic vessels are so tiny and difficult to see, it would take between six and seven hours total.
First, Tuncer mapped the lymphatic vessels in Liz's leg. She made small incisions where the lymphatic vessels intersect with veins or blood vessels that are about the same size. Under a microscope, she made very tiny incisions (smaller than a half inch) in the skin at the intersection point. Finally, she cut the lymph vessel in that area, sealing off the part that is not draining because of the damage and connecting the lymph vessel to the blood vessel.
"The stitches are thinner than a human hair, so it takes about six hours to do four or five connections," Tuncer said. When it's done correctly, the fluid from the lymph system will drain into the small blood vessels. Eventually, the lymphatic fluid gets filtered out of the blood and returns to the main circulation.
"One of the things that surprised me was how little pain I had after the surgery," Liz said. However, she did have to stay off her feet during a long recovery. For the first month, she could only be out of bed for 15 minutes at a time. After getting up—to shower or eat, for example—Liz would have to be "down" for three hours.
"I discovered that 15 minutes is pretty short—barely enough time to get something done," Liz said. "But I had a huge stack of books and binge-watched some of my favorite TV shows."
After the first month, she could get up and move around for 30 minutes at a time, but she still needed two to three hours to recover. That lasted two more weeks. She also had to wrap a very large compression bandage that extended from her hip down to her toes every other day. Getting it off and back on took more than an hour.
Liz was hopeful the surgery would work, but because of how much fluid had built up in her leg, it would take several months to clear out completely. She noticed the swelling go down slowly, and eventually her favorite skinny jeans fit again. After six months, she switched to a lower-grade compression garment. Today, she can walk around with her children and grandchildren, including hikes she thought she might never be able to do again. She even took a trip to Disney World in the fall, walking the whole day without a scooter.
"It was an answer to my prayers," Liz said. "I was at the point where I thought, 'This is not fun,' but I would get up and walk even though my leg was swollen and uncomfortable. I tried really hard not to let it interfere with my life, but it definitely was impacting my quality of life."
Liz is so relieved she called Tuncer's office and finally got some answers after suffering with a swollen leg for two years. "It was a validation that I do know my own body," she said. "I know what is going on with this thing I've been living in for 71 years."
Tuncer was glad that Liz caught that interview about lymphedema on television and recognized her symptoms. Unfortunately, many patients don't get the diagnosis and treatment they need in time, resulting in permanent damage and limitations on what they can do.
"I'm so glad there was something we could do about it," Liz said. "Dr. Tuncer is such a great doctor. She is really dedicated to her patients. The whole team was just excellent at what they do."