March 19, 2018 -- Christine Shockey suspected she was having a heart attack when she awoke at 2 a.m. with excruciating pain shooting down her left arm.
But it took medical professionals 5 days to figure it out -- a delay that changed her health forever.
Shockey went to the ER to have her pain checked out and told the doctors that 8 days earlier, her 43-year-old sister had a type of heart attack called spontaneous coronary artery dissection, or SCAD.
The mother of two living in Council Bluffs, IA, was 42 at the time, a runner with no known health or heart problems.
Doctors did an electrocardiogram (EKG) on Shockey, and the results came back slightly abnormal. A blood test also found some proteins called troponins in her blood that are released when heart muscle is damaged during a heart attack.
Despite this, she says doctors diagnosed her with gastric reflux and anxiety. While they kept her for 2 days, they refused repeated requests by her family to do an angiogram to get a better look at her heart.
She was still having arm pain when she was released, so Shockey went to her primary care doctor. He diagnosed her with shingles -- even though she didn’t have a rash.
With the pain still not going away, Shockey was able to get an appointment with a doctor the next day at the University of Nebraska Medical Center at Omaha, just across the Missouri River from Council Bluffs. When he did an EKG, he immediately announced she was having a heart attack and said she’d been having it for the last 5 days -- since her symptoms started.
He handed her his personal cellphone before rushing her into surgery. “He told me to call my husband and tell him goodbye because he wasn’t sure he could save me,” Shockey says.
Her heart was damaged so much, it couldn't pump the way it should. The main artery to her heart was torn from the top of her heart to the bottom. Although doctors restored blood flow to it by using a stent, her heart never fully recovered.
That was in 2015. Two-and-a-half years later, she is back to work and a fairly normal life, although she still has unexplained chest pain, takes heart medication, and must avoid vigorous activities that could put too much pressure on her heart.
“I have had to make some peace with the experience, but certainly I am angry because I think in my mind, I was simply too young, too fit, and too female for all of those doctors to recognize what was happening to me,” Shockey says. “There is no way that if I was a man and I had come in with those symptoms that I would have been turned away and told you just have anxiety. I think if I was a man, I would have been taken seriously.”
What Is SCAD?
Unlike a more typical heart attack caused by a rupture of plaque in the arteries, a SCAD heart attack starts with a tear in the wall of an otherwise normal artery. The tear tunnels within the wall of the artery, and its effect blocks the artery and blood flow to the heart muscles, leading to 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 4 or 5 years that our thinking on it has changed. For the past 100 years, we had been missing it,” says Sharonne N. Hayes, MD, of the Mayo Clinic in Minnesota -- a renowned SCAD researcher.
Many researchers have been rushing to learn more about SCAD and 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. The 35-page document reviews relevant research and says, among other things, that conservative treatment is generally best. There isn’t yet enough high-quality evidence on the condition to write guidelines for treatment.
Still, Hayes says the statement is badly needed to make people aware of it 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 like Shockey, many SCAD patients are sent home from hospitals in the middle of a heart attack that isn’t discovered for days.
Heart attacks are typically diagnosed with bloodwork and an electrocardiogram (a test showing the heart’s electrical activity with lines on paper), 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).
- Chest pain or discomfort
- Shortness of breath
- Pain in the arms, back, neck, or jaw
- Nausea, lightheadedness, and sweating
Ellen Robin was 53 when it happened to her. “It felt like an elephant sat on my chest,” she recalls. “I wobbled and grabbed onto a folding chair because it almost knocked me off my feet. I felt dizzy, both arms were going numb and I thought, 'What the heck is this?' ”
Who's Likely to Have SCAD?
While SCAD patients range from their teens to their 80s, the average patient is 42 years old.
Ten to 15 percent of cases happen around childbirth. Researchers haven’t been able to pinpoint a specific gender or hormonal explanation, 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 SCAD patients.
Heather Gornik, MD, a cardiologist and vascular medicine specialist at the Cleveland Clinic, says patients often don’t know they even have the disease until doctors look for artery defects after a heart attack. “So it is now recommended that all patients with SCAD be checked for FMD and other artery problems such as brain aneurysms or blockages or dissections or tears in other vessels,” she explains.
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.
But in many patients, like Meghan Scheiber, the cause remains uncertain.
“Unfortunately there are a lot of us like that,” Scheiber says. “You don’t know why it happened, so there is a fear of the unknown.”
Scheiber was 33, in the middle of a stressful week -- at work and with a sick child -- when she felt like she would pass out and had a heavy feeling in her chest and arms. She figured it was an anxiety attack or the flu, so she finished her workday and drove home.
But when the feeling came back the next day, she went to the ER. By the time she got there, she was in the middle of a heart attack. She was admitted to the ICU, had a second heart attack 2 days later, and was diagnosed with spontaneous coronary artery dissection, or SCAD.
“I asked my doctor if I would die,” she recalls tearfully, “and he said he didn’t know what would happen.”
Doctors don’t know how to prevent SCAD, either, and say custom advice is often needed. SCAD tends to happen again, so to avoid stress on the heart, patients are generally put on a daily aspirin and asked to avoid getting pregnant and 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.
Scheiber’s two attacks damaged the bottom of her heart, but 7 years later, she is symptom-free and hasn’t had another attack. She exercises regularly, eats well for general heart health, and she says as a result, she is in better shape at age 41 than she was a decade ago. “My plan is to be 41 and fabulous,” she says.
Latest SCAD Research
As recently as 2009, Hayes thought SCAD was too rare to study. But then she met a patient who told her an online SCAD community had grown to 70 female participants. Hayes connected with them and started a pilot study that has since enrolled more than 900 women and men into a SCAD registry. That’s 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 have discovered the mortality rate is very low, ranging between 1% and 5%. Results are better than for patients with heart attacks caused by plaque rupture. But SCAD happens again more than previously believed, returning in more than 20% of cases followed for a decade. Still, the latest research shows early and proper diagnosis is crucial to save lives and prevent sudden cardiac death.
- Standard heart attack treatment isn’t best.
Heart attack patients often have stents implanted to open their blocked arteries. But stents can make things worse for many SCAD patients, since they have tears in otherwise normal arteries.
“With SCAD, the artery that’s dissected or torn is very fragile, and procedures can extend the tear,” Gornik says. “Most patients with SCAD do well with medications, and the artery generally heals on its own over weeks to months.”
Doctors often treat SCAD patients with a combination of aspirin and an anti-platelet medication, observe them closely for early complications, and have them do a heart rehabilitation program. Patients get emotional support and medically supervised education about heart health and medically supervised exercise.
Most patients recover in weeks, although depending on how quickly they were diagnosed, there may be lingering heart damage.
- There are triggers.
Patients often report extreme emotional or physical stress in the days before a SCAD event, like a death in the family, breakdown in marriage, job stress, or intense physical exercise -- even lifting heavy items.
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 things that usually lead to a heart attack and are having trouble getting a diagnosis should ask about SCAD.
A study published this month stresses that providers and registered nurses in emergency rooms and labor and delivery units need to be aware of SCAD signs, symptoms, and the things that lead to it so they recognize the condition when they see it in patients -- particularly those dealing with pregnancy-related SCAD.
Rachel M. Bond, MD, associate director of women’s heart health at Lenox Hill Hospital in New York City, has co-authored a recent study and editorial calling for more awareness of the condition as well, writing that in 2018, it is still “understudied, underdiagnosed, and undertreated in women.”
“I do feel there is an age and gender bias. 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,” she says.
Shockey agrees but says based on her personal experience, even aggressive self-advocacy doesn’t always get you prompt attention because so many doctors aren’t aware of the condition. She says the cardiologist who finally diagnosed her properly said she was the first SCAD patient he had seen in his 30-year career.
“If there was anybody that advocated, it was me and my family. We did not stop until we got the help we needed, but we had to fight and fight and fight for that,” she says.
There are now very active online support groups pushing SCAD research and helping survivors connect. Robin is an administrator of a private Facebook group called SCAD Survivors that has grown to almost 2,500 members in 5 years. Nearly a thousand new members joined in the last year alone. “Every day, I add another one or two survivors to our group. We just keep growing,” she says.
Shockey is hopeful that education and awareness about the condition will continue to grow. Doctors never discovered the cause of her SCAD. While she is so grateful to have survived, she also admits she's disappointed to be told that if she had been treated earlier, she could have fully recovered like her sister without any permanent heart damage.
“I feel very, very lucky to be alive, and I feel there must have been a reason why I survived. Maybe it is because I have the opportunity to talk about this,” Shockey says. “Doctors need to have more of an open mind with regard to what a person suffering form a heart attack looks like, so when a 30- or 40-year-old woman like me walks in, they don’t instantly dismiss that.”