It was bad enough that Ann-Marie Stagoski had a life-threatening blood clot in her leg. Worse that it was misdiagnosed more than once, so she had to live with it longer than she needed to.

Stagoski had deep vein thrombosis, a blood clot in the main vein coming out of her left leg. If a piece of the clot breaks loose and heads to the lungs, it can cause pulmonary embolism, which is often fatal. Together, deep vein thrombosis and pulmonary embolism may be responsible for more than 100,000 deaths annually and are a major cause of sudden death, says the National Center for Health Statistics.

The ordeal began last July. She and her family returned from a drive to Chattanooga, Tenn. “I woke up Sunday morning in pain,” she said. “I thought I’d slept on something wrong.”

She didn’t rush to the doctor. “I took a hot bath. And then, I had poison ivy,” she said. “I couldn’t take the pain and the poison ivy, so Wednesday I went to the doctor.”

She was diagnosed with sciatica, a nerve problem that affects the legs. The doctor gave her medicine. The next weekend, she followed her son to a soccer game in Kansas City.

She brushed off the pain but while on the field, other soccer parents who had experience told her the condition wasn’t sciatica. Sciatica doesn’t causing swelling like she was experiencing.

She called her doctor in St. Louis, who told her she had been misdiagnosed, she said, and to get to a hospital immediately.

A Kansas City hospital found a blood clot, about two feet long, from her groin to mid-calf, in the major vein in her left leg. They treated her with blood thinners and heavy painkillers. Back home, she got more of the same.

Stagoski couldn’t figure out a cause; she’s active and coaches and referees soccer and softball. She suspects the cause was a rare condition doctors discovered called May-Thurner syndrome, where a major pelvic artery rests on a major pelvic vein and causes the vein to narrow. The narrow vein causes the blood to pool and clots form.

Stagoski learned that deep vein thrombosis isn’t always fatal, but it’s always painful, which can get worse by being immobile.

The bigger frustration was that for weeks, no one seemed to recognize that her pain was disabling; doctors followed medical protocols of giving her blood thinners to dilute the clot and prevent it from breaking apart. But it still hurt, she said, and no one offered alternatives.

“I think the frustration of having seen so many physicians … they would just thin the blood and hope (the blood clot) goes away,” she said. “They had next to no results for several weeks, and I was frustrated because it wasn’t getting better.”

What walking she did was on crutches or with a walker. “I wasn’t going anywhere, not even downstairs,” she said.

In desperation, she began researching the condition and learned about options. One was surgery. A friend referred her to Dr. Suresh Vedantham, an interventional radiologist and professor with Washington University School of Medicine. Vedantham also happened to be chief researcher for a nationwide study into the treatment of deep vein thrombosis in 50 hospitals across the country.

Vedantham’s study seeks to learn whether surgery should be a first option for the condition instead of the last, he said. Waiting for blood thinners to work can cause long-term, even permanent damage to a person’s leg and cardiovascular system, he said.

While Stagoski isn’t part of the study, the stages of her treatment seemed to show that she may have done well by going straight from symptoms to the “RotoRooter, as we sometimes call it,” the physician said.

Vedantham went into the vein through an incision in the groin and removed the clot with a special tool. He placed two stents in the vein where it was compressed by the artery.

Stagoski says her pain eased quickly.

Vedantham and others who study deep vein thrombosis say a major problem is how often it’s misdiagnosed. Vedantham said that’s not an indictment. Front-line general practitioners see hundreds of simple cases, and only a tiny fraction turn out to be more complicated than the initial diagnosis. “Sometimes it’s hard to tell a small thing is a big thing,” he said.

Still, that’s why patients need to be their own advocates, Vedantham said. “When people come in with one leg hurting and swelling, (physicians) should at least think about a blood clot as a possibility,” he said. “Even a low-level of suspicion, you should get an ultrasound at least.”

Also, it’s essential to check risk factors such as a history of cancer, hormonal changes including birth control pills and a family history. Considering 350,000 to 600,000 people a year develop deep vein thrombosis and related conditions, it’s worth being aware, he said.

Vedantham’s interest in the condition peaked in 2008-09 after the U.S. surgeon general called for a major push to prevent it because of the rate of fatalities. The National Institutes of Health soon afterward funded Vedantham’s study.

Stagoski will get regular checkups because people who have had clots are at risk of getting them again. However, she says the surgery fixed her condition. “I don’t have swelling or pain; no compression stocking; life back to normal,” she said.

  —Harry Jackson, St. Louis Post-Dispatch