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Kathy Beaver, a Mary Washington Hospice nurse, hadn't heard of fibromuscular dysplasia before being diagnosed. |
BY MEGAN WILLIAMS
It can appear in any number of places in the body. It can cause symptoms as severe as strokes or as silent as headaches. Fibromuscular dysplasia can take on many appearances and therefore, this potentially dangerous artery problem can easily go undiagnosed.
The condition, known as FMD, causes an alternating pattern of ballooning and narrowing of the arteries. It can be spotted with a CT scan or ultrasound. But because it's fairly uncommon, doctors may not order those tests.
Kathy Beaver of Dale City, in Prince William County, knows firsthand how tough it can be to diagnose FMD.
"The symptoms mimic so many other things," said Beaver, who works for Mary Washington Hospice.
When the 45-year-old went in for tests after suffering headaches and facial numbness, the results came back abnormal. She said doctors assumed the abnormality was a glitch in the test. But they redid the test to be sure, assuming the results would come back fine, Beaver said.
Instead, an MRI--magnetic resonance imaging--revealed the FMD stamp: a "beading pattern" of her carotid artery in which it alternately narrowed and then ballooned out.
"I had no idea what it was," Beaver said of FMD.
She was referred to a neurologist in Fredericksburg, who Beaver said hadn't seen a case of FMD in the 10 years he'd been practicing.
'THE CLASSIC CASE'
Dr. Victor D'Addio, a vascular surgeon at Mary Wash-ington Hospital, spends most of his time diagnosing common vascular conditions such as atherosclerosis, or thickening of the arteries. But 1 percent to 2 percent of the time, he discovers his patient has FMD.
The condition can range
But some people have it their whole lives and never know because it isn't serious enough for symptoms to present.
"You could have it right now," D'Addio said. "But if there is no need to run the tests, you'll never know."
This helps explain why the condition is thought to be uncommon.
"It may be rare," D'Addio said. "Or it might be undiagnosed in many people."
Symptoms can range from high blood pressure to neck pain to unintended weight loss, depending on which artery is affected. The problem can manifest in the arteries leading to the kidney, brain, abdomen, arms or legs.
D'Addio said every once in awhile, he sees a patient with symptoms that just don't add up--a sign that FMD could be the problem.
"The classic case is a young woman with funky symptoms," D'Addio said.
This would include a young woman with severe high blood pressure, or one who has suffered a stroke.
"Young woman don't have severe hypertension," D'Addio said. "Thirty-year-old women do not have strokes. They don't fit the profile."
Beaver is a classic case. Along with the numbness and headaches she suffered, she also had severe hypertension, which she still takes medication for.
Outwardly, though, "I was young and healthy," Beaver said. "They didn't suspect anything was wrong."
Neither did she, even though she's a registered nurse.
TREATMENT, BUT NO CURE
Doctors are not sure what causes fibromuscular dysplasia. D'Addio said the condition is not genetic, but Beaver is not so sure.
Her two half-sisters have since been diagnosed with FMD. One has had three strokes, Beaver said, and the other had an artery re-inflated with a balloon.
Other theories of how fibromuscular dysplasia develops include hormone level--premenopausal women have FMD more often than men do--and the abnormal formation of an artery.
There is no cure for fibromuscular dysplasia. Although a minimally invasive procedure can "stretch" the arteries open, it is only a temporary fix. The most you can do, D'Addio said, is treat the complications the condition causes.
For many patients, FMD is not a burden in their day-to-day lives.
"For most, it's just checking in with your doctor to make sure you're not suffering long-term effects of the illness," D'Addio said. "However, if you've had a stroke or have severe hypertension, it can affect you every day of your life, for the rest of your life."
Beaver has routine ultrasounds and CT scans and sees a cardiologist for her blood pressure. She avoids any activity that might cause it to rise. She knows her blood pressure is getting too high when she hears a whooshing sound in her neck--it's a signal that she needs to calm down.
But for the most part, she finds her condition manageable. She knows she'll always have FMD and that her blood pressure will always be an issue, but she is relieved to have been diagnosed early, and relieved to know what is wrong.
"If nothing else, I'm glad for that," Beaver said of how she felt after being diagnosed. "I remember coming home and saying there is something wrong with me, but it's OK."
Megan Williams: 540/374-5000,
Email: mewilliams@freelancestar.com
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To learn more about fibromuscular dysplasia, try these sites: fmdsa.org, the site of the Fibromuscular Dysplasia Society of America mayoclinic.com, where you can find an overview |
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Although fibromuscular dysplasia can cause narrowing in any artery, it is most commonly seen in the carotid arteries of the neck and FMD in the carotid artery, which supplies blood to the brain, can cause headaches, dizziness, numbness, blurred vision and neck pain. Narrowed renal arteries can cause high blood pressure and chronic kidney failure. There is also a risk for an arterial aneurysm, which can be a life-threatening emergency if it bursts. Studies in the 1970s by Mayo Clinic indicated that a little more than 1 percent of people had FMD. A similar study in 1989 revealed--through studying donated kidneys--that 71 out of 1,862, or 3.8 percent, had narrowing of the renal artery. A 2004 New England Journal of Medicine article stated that less than 10 percent of people have fibromuscular dysplasia. Doctors started and FMD registry last year to compile basic information about patients with hopes of determining the scope of the condition. There is a national FMD convention annually -Megan Williams |
