June 25, 2015

Giving Fibromuscular Dysplasia Its Due

Growing efforts bring this nonatherosclerotic vascular disease out of the shadows

Angiogram images of FMD

When it comes to fibromuscular dysplasia (FMD), Cleveland Clinic vascular medicine specialist Heather Gornik, MD, MHS, has played a key role in several firsts related to the misunderstood condition, including:


Cleveland Clinic is a non-profit academic medical center. Advertising on our site helps support our mission. We do not endorse non-Cleveland Clinic products or services. Policy

However, there is another first related to FMD that Dr. Gornik is less happy about: the fact that she is often the first physician to diagnose FMD in patients who were previously mis- or underdiagnosed.

“Cardiovascular specialists are on the front lines of recognizing and diagnosing FMD,” says Dr. Gornik, Medical Director of Cleveland Clinic’s Noninvasive Vascular Laboratory. “It’s an underrecognized disease that’s more common than many physicians realize.”

FMD essentials

FMD is a nonatherosclerotic arterial disease of medium-sized vessels, most commonly the renal and extracranial carotid and vertebral arteries, that leads to arterial stenosis, occlusion, dissection and aneurysm. Although its causes and prevalence are not well understood, it is recognized that more than 90 percent of patients are women, often in their 40s or 50s.

The diagnostic challenge

Patients suffering from FMD complain of common symptoms, and often physicians treat the symptoms without connecting them to FMD. Observational findings from the U.S. Registry for Fibromuscular Dysplasia indicate that patients do not have consistent diagnostic signs, making it even more difficult for doctors to recognize FMD. Moreover, some patients with FMD may be completely asymptomatic, with 5.6 percent showing no signs of disease.


Data from the registry suggest an average interval of four years from symptom onset to FMD diagnosis, Dr. Gornik notes. “In light of that, patients understandably become frustrated living with the symptoms without proper treatment,” she adds.

The symptomatic picture — as we understand it

Symptoms of FMD may include early-onset hypertension (starting in the 40s or 50s), poorly controlled hypertension, migraine headaches, dizziness, cervical bruit, neck pain and pulsatile tinnitus (swooshing noise in the ears). According to the U.S. Registry for Fibromuscular Dysplasia, more than one-third of patients with FMD experience pulsatile tinnitus, whereas it remains uncommon in the general population.

Some patients with FMD might be noted to have cervical, abdominal or femoral bruits, although these do not always indicate the presence of disease. In some patients, FMD presents dramatically with a major cardiovascular event, including artery dissection, stroke, myocardial infarction or ruptured aneurysm.

The need for specialized care from FMD experts

In 2008, Cleveland Clinic’s Sydell and Arnold Miller Family Heart & Vascular Institute started its dedicated clinic for patients with FMD — the first in the world. The clinic was initially held monthly but now meets twice weekly, following about 400 to 500 patients per year who visit for treatment.


The clinic’s multidisciplinary team includes vascular medicine specialists as well as vascular surgeons, nephrologists, neurosurgeons, interventional cardiologists, medical geneticists, radiologists and pathologists. Vascular medicine specialists serve as primary FMD care providers and craft customized care plans, which include routine follow-up and communication with the patient’s primary care physician. “We bring the big-picture perspective,” explains Dr. Gornik. “Our FMD clinic has become a ‘medical home’ for these patients.”

Growing the knowledge base

Cleveland Clinic is one of 13 centers participating in the U.S. Registry for Fibromuscular Dysplasia, which is sponsored by the Fibromuscular Dysplasia Society of America and began enrolling patients in 2009.

The registry gives researchers the chance to examine the natural history of FMD and gain better insight into it. “Thanks to the registry, we now know more about FMD than we have in the past, and Cleveland Clinic is proud to be one of its highest-enrolling centers,” says Dr. Gornik. “As we continue to enroll and follow patients, we expect to learn more about the causes of FMD and how to better diagnosis and treat it.”

Related Articles

photo of intubated elderly woman in hospital bed
February 23, 2024
Proteomic Study Characterizes Markers of Frailty in Cardiovascular Disease and Their Links to Outcomes

Findings support emphasis on markers of frailty related to, but not dependent on, age

GettyImages-1252287413 [Converted]
September 8, 2023
Black Residents of Historically Redlined Areas Have Increased Heart Failure Risk

Large database study reveals lingering health consequences of decades-old discrimination

23-HVI-4172009 CQD 650×450-2
August 29, 2023
Updates From CLEAR Outcomes and VALOR-HCM: Expanded Benefits With Bempedoic Acid and Mavacamten

Additional analyses of the two trials presented at 2023 ESC Congress

January 6, 2022
Study Confirms Quality-of-Life Benefits of Myectomy in Obstructive HCM

Prospective SPIRIT-HCM trial demonstrates broad gains over 12-month follow-up

21-HVI-2211308 gender-scales_650x450
August 10, 2021
8 Ways to Increase Women’s Participation in Cardiovascular Trials

An ACC committee issues recommendations to accelerate sluggish progress

December 4, 2020
Carotid Endarterectomy and the High-Risk Patient

Review of our recent experience shows it’s still a safe option

November 30, 2020
AI Looms Large in New Studies of Heart Transplant Rejection and Noncompaction Cardiomyopathy

Machine learning may improve risk prediction and guide therapy

November 19, 2020
Recent U.S. Progress Against Aortic Stenosis Mortality Has Not Been Uniform

Nationwide database study finds racial and regional variations