As far back as 67-year-old Margaret Parry can remember, pain was a constant in her life. As a preschooler, achy legs and feet kept her awake. In adolescence, her menstrual cycles debilitated her. As a young mother, extreme pain and swelling in her legs and pelvis cast a shadow on each day.
"I'd get up in the morning, and I'd be great. By 3 or 4 in the afternoon, I'd start getting ornery, but I didn't know why," Margaret says. "When I was married and a stay-at-home mom, I was on my feet all the time. I didn't know other people's legs didn't hurt at night. I didn't know it wasn't normal. You don't say to your friends, 'Do your legs hurt you?'"
Margaret, who lives in Rock Springs, Wyoming, not only had crippling chronic pain in her pelvis, and pain and swelling in her lower extremities, she also had varicose veins in her legs. She developed deep vein thrombosis, or blood clots, as well.
Through the years, Margaret repeatedly sought medical attention for her health issues. Despite many interventions, such as a hysterectomy and varicose vein ablation, the excruciating leg pain continued as Margaret aged.
"I could wake up in the morning after not having been up for hours, and my left leg would be beet red and swollen," Margaret says. "By the end of the day, I would get so tired and my legs would hurt so bad that I needed to have my legs up."
In December 2018, however, Margaret's life changed dramatically after a meeting with Mayo Clinic interventional radiologist Grace Knuttinen, M.D., Ph.D., in the Department of Radiology. At Mayo Clinic, Margaret learned her health problems stemmed from one source — a compressed iliac vein. The vein compression, a condition known as May-Thurner syndrome, had caused blood to pool in her pelvis and lower extremities.
In April, Margaret underwent a stenting procedure that opened the iliac vein obstruction, allowing blood to flow smoothly to her heart. It made a dramatic difference. "Here's the miracle — it almost makes me cry — my legs don't hurt anymore," Margaret says. "I don't care how much I'm up during the day. They don't hurt in the evening."
Margaret's experience with May-Thurner echoes that of an untold number of women suffering with symptoms such as chronic pelvic pain, Dr. Knuttinen says. When iliac vein compression leads to a backup of blood into the pelvic floor veins and lower extremities, it can cause high blood pressure in the veins — a condition called venous hypertension. That can lead to lower limb swelling, pain and venous leg ulcers. Other symptoms brought on by the condition include lethargy, depression, headaches and nausea.
"It's a disease that is very underdiagnosed, misdiagnosed and undertreated. One of the reasons is sometimes the lack of visual physical findings," Dr. Knuttinen says. "A good clinical history is vital. A lot of these patients come in with chronic pelvic pain for months and sometimes years, which is a major cause of disability leading to a really poor quality of life."
The condition develops at the point in the pelvis where the right iliac artery crosses over the left iliac vein. In patients with May-Thurner, the left iliac vein, which brings blood from the left leg to the heart, gets squeezed, or compressed, between the spine and the right iliac artery.
As a result of the compression, the body adapts and finds other ways to transport blood back to the heart, Dr. Knuttinen explains. "Our body is a wonderful thing, and anytime you have a complete obstruction of some type of venous return, your body will do a good job of finding other pathways," she says. "Other channels will open up, but these channels can create or accentuate other symptoms."
"No matter what they did to her legs, it wasn't going to improve the flow because they weren't improving the main pipeline."Grace Knuttinen, M.D., Ph.D.
For Margaret, the condition caused varicose veins to form throughout her pelvic floor and leg. But a more dangerous problem for her was the formation of blood clots, which could break apart and move into her lungs, causing a potentially life-threatening pulmonary embolism.
At her meeting with Dr. Knuttinen at Mayo Clinic in Arizona, Margaret underwent a series of tests, including a lower extremity ultrasound and an MRI, to diagnose May-Thurner. Dr. Knuttinen personally read Margaret's scans, as she does for all of her patients. Margaret's test results confirmed the vein compression, as well as a web of dilated veins in her pelvis — the same sort of varicose veins she'd battled in her legs for years.
"There are a lot of places out there doing laser vein ablation in the lower extremities. But if you fix that problem and have a compression of the iliac vein on top, it's not going to work because ultimately you have to fix the main outflow channel," Dr. Knuttinen says. "No matter what they did to her legs, it wasn't going to improve the flow because they weren't improving the main pipeline."
The procedure used to correct the blood flow involves inserting a catheter through the groin into the left femoral vein, and a catheter and wire are advanced to the site of the vein obstruction. Then, Dr. Knuttinen says, intravascular ultrasound is performed to assess the severity and length of the compression, and to determine what size stent is needed to open the compression. Once a stent is placed, it keeps the vein open, allowing for blood to flow freely.
After Margaret had the procedure, her daily discomfort decreased significantly. Dr. Knuttinen told her she may experience back pain as a result of the stent placement, and she did. But the pain was mild, Margaret says, and she was able to control it with acetaminophen.
"The more doctors who know about this can say to those who have it, 'This can be fixed.' When I went home after the stenting procedure, my pain was very short-lived."Margaret Parry
"I don't know how many people are affected by this, but hopefully more and more doctors will learn about it," Margaret says. "The more doctors who know about this can say to those who have it, 'This can be fixed.' When I went home after the stenting procedure, my pain was very short-lived."
Although Margaret will have to keep taking blood thinners for the rest of her life, she feels that's a small price to pay to get rid of the pain. And not only is Margaret now pain-free, she's more energetic and excited about life again. Travel and shoe shopping are especially fun, she says.
"My left leg was always worse than my right and always bigger than my right," Margaret says. "I'd go to buy boots, and the right side would be baggy, but the left side would be tight. My left side is almost the same as my right now."
More than anything, though, Margaret says she feels gratitude that Dr. Knuttinen was able to decipher her symptoms and provide the correct diagnosis and treatment. "I don't know where Dr. Knuttinen got the knowledge for this, but I want Mayo to know what an incredible job she's done for me."