SCAD: The Under-the-Radar Heart Attack

16-35 SCAD: The under-the-radar heart attack

Reed Pence: Nine years ago, Shelley Simonton was a healthy, active young mother of two children — a three-year-old daughter and a seven-month-old son, when she started having pain in her back and between her shoulder blades.

Shelley Simonton: I kind of figured that maybe I had pinched a nerve and I had some tightness in the back of my neck and a little bit of aching in my upper jaw. I thought I had a sinus infection. I had one time that it woke me up in the middle of the night and the back pain was bad and I had this feeling that something was really, really not right. I ended up taking some Advil and managing to go back to sleep.

Pence: A few days later Simonton was teaching middle school when the strange symptoms returned. She decided to check in with the school nurse.

Simonton: She said at that time that my blood pressure and my pulse were thready and it started to become where I couldn’t really think very well. It was just kind of an all-consuming feeling. Luckily, she decided to call the ambulance.

Pence: Simonton was rushed to the ER, but because she was young and healthy with no risk factors for heart disease, doctors diagnosed her with a cardiovascular spasm. But in reality, Simonton’s condition was far more serious. One of her coronary arteries had spontaneously split open and caused a heart attack, a condition called “SCAD.” But Simonton and her cardiologist wouldn’t know this for another five years.

Dr. Sharonne Hayes: It’s an acronym that stands for Spontaneous Coronary Artery Dissection, so what physically happens is that the layers of an artery split open, and it happens to be in the coronary or heart arteries. And when SCAD happens, it reduces the blood flow to the heart muscle and a heart attack occurs. So a quick way of saying that is it is a type of a cause of a heart attack, but it has nothing to do with what we traditionally think of as a heart attack with, you know, with a plaque build-up and people with lots of risk factors.

Pence: That’s cardiologist Dr. Sharonne Hayes, founder of the Women’s Heart Clinic at the Mayo Clinic.

Hayes: It is extremely uncommon in the greater scheme of heart attacks. And I say uncommon because if you’d asked me four years ago, the answer would have been rare and I’m not using that term anymore because as we are doing a better job at looking for it, particularly in people who have heart attacks who are young and have no risk factors or after a baby, we are seeing that it is much more common. It was a recent study that looked at all angiograms and it may be as high as 4% of all heart attacks. And in women under the age of 40, it may make up the majority of heart attacks. So it’s very uncommon compared to the many hundreds of thousands of heart attacks that happen every year, but it’s not rare.

Pence: Hayes says what’s most striking about this type of heart attack is the demographic— mostly young, healthy women. It’s also why these patients are often initially misdiagnosed, sometimes for years.

Hayes: First of all, the average age is the early 40’s with people as young as teens into their 60’s. It’s about 80% women, which certainly is very different than the demographic. And among women, about 20-30% of them have it in the peripartum period, you know right before delivery or within the week or so afterward. So men get it, but we see it much less frequently in men.

Carol Vich: When I went into the emergency room and even once I was admitted, I think because you know, I was in good shape and my age, I was told that I was having a panic attack. It was difficult to get through the system and to eventually be where I needed to be which was ICU.

Pence: That’s SCAD survivor Carol Vich. She was 49 years old at the time of her SCAD event and was positive that a panic attack was the last thing she was having.

Vich: I’d been through a very, very difficult time over the past 10 months with my brother passing away and trying to take care of my grieving parents and I knew what anxiety felt like. I knew what a panic attack felt like and the pain, it was indescribable.

Pence: Hayes says that until recently, and in some cases even still today, most cardiologists just aren’t looking for SCAD.

Hayes: When I went back to cardiology school, and I’ve been in practice since 1990, so this was a condition that we learned about way back then. But it was that condition that, “Oh you probably won’t even see one in your career,” or “maybe you’ll see one or two.” Because it was felt to be so rare because it was so under diagnosed. And before angiograph, you know we’ve being doing heart angiograms for 30+ years, but prior to that, they were typically diagnosed at autopsy because you really have to see the artery. We just do a whole lot more medical imaging now, so that’s one reason I think we are more able to diagnose and why there are more cases. Over the past two or three years, there have been several papers that have been published in the medical literature and I think what’s happening now is we’re being contacted by cardiologists who said, “You know, it never seemed right that that woman or man in my practice with no risk factors had a heart attack. You know, I’ve looked at the angiogram again and now I think that heart attack two years ago was SCAD.”

Pence: Researchers don’t yet know what causes SCAD, but they’ve found clues among SCAD survivors… Similarities that may be keys to solving the mystery.

Hayes: There are a few genetic mutations that are associated with weakness of blood vessels. Either of dissections or aneurysms, so we do recommend that when somebody’s diagnosed with SCAD that they be assessed to see if they might have one of these connective tissue diseases. But there does not appear yet to be a single gene that accounts for this, but we’re looking because clearly there are some family cases we have several in our research cohort, two sets of sisters and a mother-daughter, so there may be in that family some genetic mutation, but there isn’t a test we can just do, a blood test, and say, “Oh well you have this gene, we need to test your sister and your children right now.” We’re not there yet.

Pence: Another condition associated with SCAD is fibromuscular dysplasia – which is in itself uncommon.

Hayes: Fibromuscular dysplasia is an abnormality of blood vessels where the muscle layer builds up in it and it does weaken the blood vessels. I would guess that well over 20 or 30% of patients with SCAD have fibromuscial dysplasia, so that may turn to be the cause or it may be an association.

Pence: Hayes has many athletes in her SCAD practice— individuals who once worked out regularly, and some even vigorously, like marathoners and triathletes.

Hayes: Many, not all, tell us a history of either extreme physical exertion in the few days before they have their SCAD or extreme emotional stress, and we’re not talking about that they yelled at their husband but lost a business, lost a dear relative or multiple losses at a time. So it may be that somebody who’s got an underlying blood vessel problem and are vulnerable and, you know, a combination of things trigger it.

Pence: That’s why researchers have considered whether SCAD might be associated with what’s known as broken heart syndrome.

Hayes: That is a condition which the age range is typically older, it’s usually post-menopausal women, it’s strongly female-dependent, you know it has a very small number of men. It is associated with emotional stress and it results in a heart attack and we talked about might there be some overlap? And I just think we don’t understand enough about the effect of stress on people and what’s clear is as we look at anything, whether it’s a heart attack or coronary dissection or stress, it is very clear that the effect on women vs. men is different. Sex-based medicine and understanding how a disease like SCAD or stress plays out among women and men is an important question so that men and women can get better care.

Pence: One of many problems SCAD patients face is that the symptoms don’t always mimic a standard heart attack. Patients may not even have chest pain, for example. That means once you’ve had SCAD, any little ache or pain can be cause for alarm.

Hayes: When I’m talking with a patient, I address that head on. I name it because most of them have talked about that and many of my patients, after their heart attack, they have multiple trips back to the emergency department with chest pain. Some of it is cardiac pain but some of it is, “Boy, I better rush in with any little twinge because I don’t want this to happen to me again.” I think learning to live with a condition for which there’s very little certainty and little known is tough.Pence: In the meantime, SCAD survivors walk on eggshells not knowing when the next SCAD event might strike — that in itself is stress producing.

Hayes: You can imagine that the individuals living with SCAD are often very worried and frightened about a recurrence, because recurrences do happen. In our series, we estimated that it may be over 10 years, as many as 20% might have a recurrence. But unlike a standard heart attack where, if I’ve got a person, man or woman, who’s had a heart attack not from SCAD, I have five or six things I can tell them to do or to take that are proven to reduce the risk of having another one, and I don’t have anything to offer men or women with SCAD.

Simonton: Day to day has been difficult. It’s much better now after my second heart attack, the second event, I did go into a pretty extreme depression, especially I’ve got two little ones at home and my biggest fear is leaving them and not being there for them. Day to day, it is a struggle with any odd symptom I have, questioning whether or not this is another event and it has been very difficult sometimes. One thing I’m hoping comes out of this study is that they have some more non-invasive testing available because right now really the only way for me to know whether or now a weird symptom is an event is to have an angiogram.

Pence: Awareness about SCAD is slowly spreading within the medical community, but ignorance about the condition still exists.

Simonton: Even when I go in to Urgent Care for a sinus infection or go to any other doctor or medical area, I’m educating the doctors and the nurses about the condition because it’s just so unknown. When they ask me about my health history and then they read on my chart that I’ve had three heart attacks, they look at me thinking, “Oh wait a second. Really?,” you know, “You’re only 42 years old.”

Pence: Even with so much uncertainty, Hayes is optimistic that her research will provide some answers in the next couple of years.

Hayes: Having these patients with SCAD helping us focus our attention, we have come up with not the answer but some better ideas on how to approach treatment when those individuals first arrive at the hospital. How to better diagnose it by setting up some angiographic criteria and the associations with fibromuscular dysplasia and others, so I’m very optimistic that we’re going to have a lot more answers, maybe not all the answers, but we’re going to have a lot more answers probably in the next year or two that will impact how we diagnose and treat these individuals.

Pence: Five or six years ago SCAD patients were all alone. There was little research and no support. Today, it’s all different. SCAD survivors organize walks to raise awareness, enroll in research programs, and share concerns in support groups. They even have their own Facebook page, which you can find by visiting our web site at www.radiohealthjournal.net.

Our writer/producer this week is Polly Hansen. I’m Reed Pence.