March 20, 2019 -- With decades of experience as a heart nurse, Kristin O’Meara knew all too well how to recognize the signs of a heart attack.
Until it happened to her.
The 31-year career nurse at Mayo Clinic in Rochester, MN, avoided going to the ER when she first felt a searing pain in her chest 2 years ago.
“My brain kept going back and forth, saying 'this can’t be a cardiac incident. I’m healthy. I don’t have any risk factors.' I just kept thinking the pain would go away,” O’Meara says.
O'Meara was 56 at the time. An avid runner, she was on an indoor track when she felt the chest pain. When it didn’t go away after a few minutes, she drove herself to the hospital ER but couldn’t find a parking space. So even though she says it’s hard to believe now, she kept driving and ran an errand.
"Denial is a very strong emotion,” she says. “I thought I was healthy. I thought I was invincible. But we are not invincible. Anything can happen to anyone.”
Once she got home, she says it became impossible to deny that something was happening. With the pain still intense, she took a few aspirin and immediately vomited them. That’s when she called her husband and told him she needed to go to the ER. Even so, she says, “I just couldn’t imagine I was having a typical heart attack.”
She wasn’t. O’Meara was having a spontaneous coronary artery dissection, or SCAD. The Mayo Clinic is home to some of the top experts on the condition, and doctors and nurses there immediately recognized it once she was admitted to the ER. O’Meara says she will forever feel grateful.
“I did all the wrong things and I should know better,” O’Meara says. “I’m just very, very fortunate that I got to an ER that recognized right away what was happening.”
What is SCAD?
Unlike a typical heart attack caused by a clot that blocks an artery, a SCAD heart attack starts with a tear in the wall of an artery. The tear tunnels through the wall and ultimately blocks the blood flow to the heart, causing a heart attack.
Although SCAD causes a small percentage of heart attacks overall, it’s responsible for 40% of heart attacks in women under the age of 50. And it mostly happens to women. More than 90% of SCAD patients are female.
“This is an important cause of heart attacks among younger people, and it has really only been in the past 5 or so years that our thinking on it has changed. For the past 100 years, we had been missing it,” says Sharonne N. Hayes, MD, a leading SCAD researcher at the Mayo Clinic.
Many researchers, rushing to learn more about SCAD, are starting to better understand how it works and how to treat it. The American Heart Association released the first scientific statement about the condition in February 2018. The 35-page document reviews relevant research and says that for most patients, conservative treatment to ease symptoms and prevent another SCAD is generally best. There isn’t enough high-quality evidence on the condition to even write guidelines for treatment.
Still, Hayes says the statement was badly needed to make people aware of SCAD and improve diagnosis rates. SCAD patients are generally healthy and don’t have or do the usual things that can lead to heart attacks -- like smoking, diabetes, or being overweight -- so SCAD is often misdiagnosed and may lead to treatment that can cause more artery damage.
“SCAD is happening to a group of women who appear healthy, are thin, and have no risk factors. So even though they have classic heart attack symptoms, they are often being misdiagnosed,” Hayes says. She says many SCAD patients are sent home from hospitals in the middle of a heart attack that isn’t discovered for days.
Sherryn Hensley says she didn’t imagine she could be having a heart attack when it happened to her in 2013. “I didn't think that healthy 37-year-olds could have heart attacks, so I ignored my symptoms as long as I could,” she says.
She waited half a day to go to the hospital after feeling pressure and pain in her chest. The initial feeling was so intense it took her breath away, but it passed for a while. Then it came back and she felt pain, pressure, and nausea that night. She went to the hospital the next day, but they sent her home after 24 hours without finding any problems. Ten days later, she was still feeling intense chest pressure and having trouble taking a full breath. She called the cardiologist who had seen her days earlier.
“He told me it was indigestion and anxiety and I didn't need to come back in. I really felt something was wrong but felt too embarrassed to go back to him, so my friend convinced me to try a smaller regional hospital,” Hensley explains. “After 24 hours in the second hospital, a second cardiologist was signing my discharge paperwork after not finding any problems when I passed out in front of him in what I’m told was a near-fatal event.”
Heart attacks are typically diagnosed with blood work and an electrocardiogram, a test of the heart’s electrical activity. Those tests didn’t find a problem with Hensley. But SCAD can only be diagnosed with an angiogram, an X-ray test using special dye and a camera to take pictures of blood flow in the coronary arteries.
Symptoms of SCAD include:
- Chest pain or discomfort
- Shortness of breath
- Pain in the arms, back, neck, or jaw
- Nausea, lightheadedness, and sweating
Looking back, Hensley says she wishes she had better understood what was happening to her so she could have pushed for proper care sooner.
Who's Likely to Have SCAD?
While SCAD patients range from their teens to their 80s, the average patient is 42 years old.
New research published in 2019 suggests 4.5% to 10% of patients have SCAD around childbirth. Researchers don't know why, but they know the physical strain of childbirth isn’t the main cause, since SCAD happens with both planned C-sections and unplanned vaginal deliveries.
It does appear to be associated with other artery problems, most commonly fibromuscular dysplasia (FMD). This disease causes cells to grow abnormally in artery walls and is seen in at least half of people with SCAD. Hayes, the Mayo Clinic doctor, says patients often don’t know they have that disease until doctors look for artery problems after a heart attack. It is now recommended that all patients with SCAD be checked for FMD and other artery problems, such as brain aneurysms or blockages or tears in other vessels.
SCAD can also run in families, although Hayes says researchers haven’t cracked the genetic connection. Her research team is collecting DNA samples from patients and sometimes sees the condition among mothers, daughters, aunts, nieces, and sisters.
A study in early 2019 found the first genetic risk factor for SCAD, and researchers say it may be what links the condition to FMD as well. Hayes says the finding is exciting but it’s far too early for there to be a test for this.
Doctors don’t know how to prevent SCAD, either, and say custom advice is often needed. In some people, SCAD can happen again, so to avoid stress on the heart, patients are sometimes told to take a daily aspirin and to avoid getting pregnant or taking hormone therapy. They are also told to avoid high-impact and high-intensity sports and heavy lifting that causes strain -- things like bodybuilding or shoveling snow.
Latest SCAD Research
As recently as 2009, Hayes thought SCAD was too rare to study. But then she met two patients who told her an online SCAD community had grown to 70 women. Hayes connected with them and started a pilot study that has since enrolled nearly 1,100 women and men into a SCAD registry. Mayo's SCAD clinic now sees 12 to 15 new patients each month.
“For sure we are recognizing it more. It’s being diagnosed more frequently, but we don’t think it’s happening more frequently. We think we were missing 80% of the cases before,” Hayes says.
Hayes’ work has led to several discoveries about the condition. They include:
- Survival rates are much better than first thought.
Doctors used to view SCAD as frequently fatal but now think the mortality rate is low, ranging between 1% and 5%. But SCAD happens again more than previously believed, returning in more than 20% of people followed for a decade. Early and proper diagnosis is crucial to save lives and prevent sudden cardiac death.
- Standard heart attack treatment isn’t best.
Doctors often treat SCAD with a combination of aspirin and an anti-platelet medication, observe them closely for early complications, and have them participate in a cardiac rehabilitation program. Most patients recover in weeks, although depending on how quickly they were diagnosed, there may be lingering heart damage.
Heart attack patients often get stents implanted to open their blocked arteries. That isn’t recommended for SCAD because stents can make things worse -- the artery that’s torn is fragile and procedures can extend the tear. Hayes says most people with SCAD do well with medications and the artery generally heals on its own over weeks to months.
Unfortunately, that’s not what happened with Hensley. Doctors put stents in her arteries because they felt she would die without that intervention. But she had five more SCADs in the first 6 months after the procedure, which doctors later told her could be a complication of the stents.
It’s all taken a toll. Hensley’s been told continued damage could mean a heart transplant will be in her future, but for now, her heart is strong and her heart function is good, so she tries to stay focused on the present.
“I just can’t let myself worry about what life is going to be like,” Hensley says. “What I have right now is the only thing that matters: My time today and my children.”
- There are triggers.
Patients often report extreme emotional or physical stress in the days before a SCAD, like a death in the family, a breakdown in marriage, job stress, or intense physical exercise -- even lifting heavy items.
New research affirms that migraines are also more common in women with SCAD, although Hayes says it isn’t clear why.
Helping SCAD Patients
Hayes says the best advice for women is to call 911 if they think they are having a heart attack. Young women who don’t have the characteristics or symptoms that usually lead to a heart attack and are having trouble getting a diagnosis should ask about SCAD.
A study published in March 2018 stresses that doctors and nurses in emergency rooms and labor and delivery units need to be aware of SCAD symptoms so they can recognize the condition -- particularly those dealing with pregnancy-related SCAD.
“I do feel there is an age and gender bias,” says Rachel M. Bond, MD, a women’s heart health and prevention specialist who has studied SCAD. “So I really stress to women that if something doesn’t feel right to you, you need to be an advocate for yourself and don’t leave the ER until you feel assured everything is checked out.”
Patients are working to build awareness through online support groups that push SCAD research and help people with SCAD connect. A private Facebook group called SCAD Survivors has grown to 3,200 members in the last several years.
Patients like Hensley also stress the importance of advocating for yourself and getting checked out when things just don’t feel right. “I do think SCAD patients have one fatal risk factor: "superwoman syndrome." We think we can handle it, but we need to listen to our bodies and take care of our health,” she says.
As for O’Meara, the Mayo Clinic nurse with SCAD, she says 3 months of cardiac rehabilitation, which for her included running under medical supervision, allowed her to safely resume her favorite form of exercise. Two years later, she no longer runs full marathons but has run a half marathon and says the physical activity is good for her mind and body. She says her health is great and she believes her personal experience has made her an even better nurse.
“I’ve always been sympathetic, but I think it’s helped me to better connect with some of my patients and empathize with some of the fears they have,” O’Meara says. “It’s also made me just really enjoy life. I’m truly grateful that I survived it and for every day that I now have.”