Triathlete’s Mysterious Leg Swelling Turns Out to Be A Rare Condition

USC alumnus John Privett has been active his whole life and running triathlons since the 1980s. When he experienced ankle pain after a normal run, his general practitioner told him not to worry about it. When symptoms worsened and were no longer able to be ignored, Ketan Patel, MD, of Keck Medicine of USC stepped in to help.

After the initial pain, the swelling started: first his ankle, then up to his calf. John thought it might be a muscle tear at first, then knew it couldn’t be. He tried to keep going, even completing a half–Iron Man competition by using compression socks to manage the swelling. But his condition was getting worse.

“Next thing you know, my leg was ballooned up,” said John. He’s good humored about the situation now, but at the time the swelling, which was from fluid retention, was frustrating to a man who was used to being on the move. He couldn’t fit his calf into a ski boot, couldn’t fit his foot into a stirrup. Soon his leg wouldn’t fit into his jeans. It didn’t hurt, but it was heavy and uncomfortable.

“I had a Coke bottle of fluid in my ankle, foot and calf!” John recalls.

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He spent a year chasing a diagnosis. One doctor thought he might have an abdominal tumor. Though John was relieved when it turned out that he didn’t have cancer, it did mean that he was back to scouring the internet for clues.

John was finally diagnosed with lymphedema tarda, a congenital condition in which the lymphatic pathways are underdeveloped. Lymphatic fluid wasn’t properly draining from his system, and was building up in his foot and leg.

Now that he knew what was wrong, John just had to find a doctor who could deal with this condition properly. This turned out to be more difficult than he expected. Lymphology isn’t a common study for many doctors, so they tend to shy away from lymphedema cases.

In the end, it was John’s wife Cissy, also a USC graduate, who found Ketan Patel, MD, associate professor of clinical surgery at the Keck School of Medicine of USC. Dr. Patel is one of the few surgeons in the world who is trained to do lymphovenous bypasses and vascularized lymph node transfers — leading-edge microsurgical techniques that can help reduce the swelling and pain of lymphedema. He underwent perhaps the most well-known fellowship for microsurgery in the world with Ming-Huei Cheng in Taiwan.

“I just found it fascinating,” Dr. Patel says. As Dr. Cheng taught him the surgical techniques, Dr. Patel combed through textbooks and learned about the lymphedema disease process on his own.

Microsurgery is already a technical challenge. When performing typical microsurgery, surgeons use a microscope and very fine sutures to work with diameters of just 2–3 millimeters. But when the procedure is for lymph vessels, it becomes “supermicrosurgery,” Patel explains, with vessels a single millimeter — or less‚ in diameter.

“It’s an extreme type of microsurgery,” Patel says. “It’s exponentially more difficult. You’re using special instruments just for lymphatic procedures. It’s just so small.”

Dr. Patel was recently appointed director of Keck Medicine’s new Center for Advanced Lymphedema Treatment and Surgery. With a mission to provide surgical and non-surgical treatment for lymphatic disease, the center boasts the only multi-disciplinary lymphedema treatment team in the greater Los Angeles area.

Finding a Pathway

Dr. Patel most frequently works with breast cancer patients who have secondary lymphedema that can develop when the lymph nodes are damaged or removed during treatment for breast cancer. In fact, it was an article about breast cancer treatment and reconstruction that led the Privetts to Patel. John said that Dr. Patel understood his situation right away.

“He knew exactly what was going on. One meeting with Dr. Patel, and we knew we were going with him.”

Dr. Patel brought John in for a lymphovenous bypass, a painstaking procedure in which the surgeon connects lymphatic vessels to smaller veins in order to give the fluid a pathway out of the patient’s system. The grueling procedure took seven hours.

“It’s fatiguing and can be frustrating,” explains Dr. Patel. “That may be why there are only a couple dozen people in the world who are doing much of this.”

But the work paid off. In two months, John’s swelling went down. He’s now back to triathlons, riding horses and surfing, and is a favorite with Dr. Patel’s staff when he comes in for his annual check-ups.

“He was a great patient with a good outcome,” says Dr. Patel. “We’re always glad to see him doing well.”

By Lex Davis