How I used to describe SCAD. And what I’ve learned since.

by Carolyn Thomas    @HeartSisters

I’d never heard of the heart condition called Spontaneous Coronary Artery Dissection (SCAD) until I attended the WomenHeart Science & Leadership patient advocacy training at Mayo Clinic in 2008.  SCAD, I learned back then, was a rare and often fatal condition, seen mostly in young, healthy women who have few if any cardiac risk factors. But in a recent interview, cardiologists who specialize in this frequently misunderstood diagnosis added some surprising updates to what is now known about SCAD.     .        .

I once described this condition back in 2010 like this: SCAD involves a torn flap in the lining of a coronary artery that can block blood flow to the heart muscle, causing a serious heart attack or sudden cardiac arrest.  

But as Mayo Clinic cardiologist Dr. Sharonne Hayes (founder of the Mayo Women’s Heart Clinic and a noted SCAD researcher) recently explained to a Best Health interviewer, most SCAD patients do not actually have a flap from a torn artery, but a bleed or a split called an intramural hematoma.

That may help to explain why so many physicians over the years have dismissed cardiac symptoms in young, healthy-looking SCAD patients that don’t fit the “old fat white guy” profile over the years, a reality that has resulted in up to 80 percent of SCADs likely being missed. As Dr. Hayes adds:

““I have sometimes described the dissection as like a blister within the layers of the artery. It can hurt as the layers of the blister split and the pressure builds up like a bruise. If it fills up and bulges enough, it can block the flow of blood going past it or, if the pressure builds up, it can burst open, leaving a free layer of artery that can also flap around to obstruct blood flow.

I used to describe this condition as“rare”, until I heard Dr. Hayes say that physicians now believe it’s not that rare after all – but rarely appropriately diagnosed. Dr. Hayes adds:

“SCAD is not rare. It’s ‘uncommon’ as a cause of heart attack overall. It is the #1 cause of heart attack among women who are pregnant or have recently given birth, and women under age 40.”

I used to describe this condition as dangerous and usually fatal. For example“It used to be, and sadly remains in almost 70% of cases, a deadly condition often only correctly identified post-mortem during autopsy.” 

But Dr. Hayes now believes we have reason to be optimistic about this unusual cardiac event.  Latest clinical data show that SCAD survival is now estimated to be in the 93 to 98 per cent range, That’s higher, Dr. Hayes notes, than the average survival for an acute heart attack like mine. Most importantly, doctors now know far more about SCAD  – and are learning more every day – compared to what was known just a decade or so ago.

We’ve come a long way, baby – and this particularly applies to understanding SCAD. Dr. Hayes described those early days for SCAD patients in that Best Health interview:

“I founded our Mayo Women’s Heart Clinic in 1998. And back then, women were just being ignored. They had classic symptoms and wouldn’t even get an ECG. That’s improved hugely.

“The challenge still is this younger group of patients, some of whom go in literally saying, ‘I have an elephant on my chest, and pain radiating to my jaw and down my left arm, and I threw up.’ You cannot make up more classic heart attack symptoms, yet they are sent home.

“Some of these women have been traumatized by not being taken seriously. As important as understanding this condition is validating the experience of these women, whether they were ignored, misdiagnosed or referred to a cardiac rehabilitation program that was tailored more to a post-bypass 80-year-old than a 35-year-old.”

“And then they have their doctors scratching their heads and saying, ‘Aren’t you interesting? You’re the first SCAD case I’ve seen!’  Nobody wants to be an ‘interesting’ case.

“I would consider myself among the SCAD experts in the world, and I still don’t have all the answers”

She describes SCAD patients as being “like the square peg in a round hole.”

“If you’re treated like an oddity or a fragile egg that could break any minute, because you have symptoms that a lot of cardiologists aren’t used to dealing with, it’s very frustrating and scary.”‘

Katherine K. Leon, whose SCAD heart attack occurred at age 38, just six weeks after giving birth to her second baby, could have been the poster child for that “too young, too fit, too well”  stereotype of a young woman who is NOT having a serious heart attack – despite her crushing chest pain:

“I didn’t smoke. I didn’t eat fatty foods. I exercised. Why in the world would my body just fail? I’ve been told so many times it was just bad luck or a fluke. Nobody wants to hear they’re a fluke.”

So why would cardiologists and SCAD researchers like Dr. Hayes now be feeling more optimistic about improving diagnosis and treatment of future SCAD patients?  A number of emerging advancements are cited in the article:

Vancouver cardiologist Dr. Jacqueline Saw at the University of British Columbia is doing important SCAD-specific research. She and her international team recently discovered a series of common genetic factors among SCAD patients that could help identify why the coronary artery weakens and tears, and a classification system to analyze coronary angiograms (which help locate the tear and its measurements). Her team has also identified risk factors between SCAD, Fibromuscular Dysplasia (FMD)* and migraine headaches

At the University of Ottawa’s Canadian Women’s Heart Health Centre, cardiologist Dr. Thais Coutinho offers cardiac rehabilitation programs dedicated to providing peer support for women with SCAD to regain confidence in their bodies. Dr. Coutinho explains: “SCAD can be something that can be overcome, or it can be something that can give you PTSD. We make sure we take care of our patients’ mental health just as carefully as we take care of their heart.”

And at Mayo Clinic, Dr. Hayes has created an international virtual disease registry of SCAD patients (the largest in the world) plus a DNA biobank to help identify potential causes, best treatments and the risk of a repeat SCAD diagnosis.

Finally, I want to mention here the SCAD Alliance, a non-profit organization and network of SCAD survivors, researchers and clinicians whose unique aim is to “empower each SCAD survivor with an accurate diagnosis, superior outcome and answers.”  Their SCAD Warrior App (developed with help from physicians and psychologists from the University of Colorado, Stanford School of Medicine, the SCAD Alliance and Massachusetts General Hospital) can be downloaded here.  Their comprehensive list of online resources includes support for both SCAD patients and family members.  And their 2014 White Paper, “The Vital Role of the Emergency Department in Improving Outcomes of Spontaneous Coronary Artery Dissection”  should be required reading for all who work in Emergency Medicine (contributors include Drs. Leanna Wen, Malissa Wood, David Adlam, Esther Kim and James Feldman).

Image: Adonyig, Pixabay

Q:  Have you or someone you know been diagnosed with SCAD?

 

See also:

-A Zebra Among Horses – guest post by SCAD survivor Laura Haywood-Cory, who described her young heart patient self as: “a freak, an anomaly, a 40-year-old woman in a cardiac rehab class of men in their 70s.”

-Fibromuscular dysplasia * (FMD) has been linked to SCAD. This diagnosis is most common betweien the ages of 40 and 60. Over 90% of patients with FMD are women. Find out more from this Cleveland Clinic site.

-Wall Street Journal article called “When Patients Band Together: Social Media Spurs Mayo Clinic Research”

-SCAD Ladies Stand Up: Stories of Patient Empowerment, the special report from Inspire.com and the WomenHeart online support community. It features a  number of interesting first-person accounts from SCAD survivors plus an introduction written by cardiologist Dr. Sharonne Hayes (and even a link to a Heart Sisters article about SCAD listed on the report’s resource page!)

 -SCAD Research is a non-profit fundraising organization, started by Bob Alico, whose wife Judy died from SCAD. When Bob asked the cardiologist what had caused the SCAD that so quickly took Judy’s life, the doctor said he would probably never know the cause because little was understood about SCAD. In the midst of his grief, Bob decided something needed to be done to find answers. He learned that Dr. Sharonne Hayes had started researching SCAD at Mayo Clinic, and also that finding enough funding for this research was critical. In 2011, SCAD Research was established to help fund promising studies.

Sharonne N. Hayes et al. 2018.

 

 

9 thoughts on “How I used to describe SCAD. And what I’ve learned since.

  1. Spontaneous coronary artery dissection (also known as SCAD) is a medical emergency that happens when a rip develops in a blood vessel in the heart. It is rare and requires immediate medical attention.

    SCAD has the potential to impede or completely restrict blood flow to the heart, resulting in a heart attack, irregular heart rhythm, or sudden death.

    SCAD most frequently affects women in their 40s and 50s, but it may afflict anybody at any age and can even affect males in certain circumstances. A significant proportion of those suffering with SCAD do not have risk factors for heart disease such as high blood pressure, high cholesterol, or diabetes.

    If SCAD is not identified and treated as soon as possible, it may result in abrupt death. If you are experiencing heart attack symptoms, get medical care immediately – even if you believe you are not at danger of having a heart attack.

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  2. Just wanted to say THANK YOU for the article. I am a survivor of SCAD.

    In Feb 1999 at the age of 31, two weeks after giving birth to my daughter, I had a heart attack. I had all of the signs and symptoms of a heart attack, but they were not taken seriously. No EKG, a blood pressure of 200/180, and was told to go back and be seated.

    Eventually I was seen and then recognized that I was in trouble. I needed to be transferred to another hospital to have emergency Catheterization. A stent was placed in my LAD artery that was 98 % blocked. Unfortunately two weeks later I had another heart attack and more blockages that were not there with the first one. I needed more stents. It was not a good experience at all. Very traumatizing and difficult to process.

    I needed to be put on a balloon pump because my heart was weak. The overall impact it has had on my life has been life changing. I have a defibrillator and my Ejection Fraction (EF) is 30% and I’m disabled.

    Back then heart health wasn’t a conversation like today. I was lost! I had no one to go to and talk to about my concerns. I was devastated. I felt so alone and afraid. Being a new mom, not able to care for myself let alone a baby because I was too sick. I had to learn and educate myself about my disease which empowered me to want to raise awareness and help other women.

    I became a 2003 WomenHeart Science & Leadership participant and advocate. I’m so grateful to read articles raising awareness because it gives women hope! Education and information are powerful and helpful, and can change lives and outcomes.

    I just wanted to say THANK YOU for your time and effort. Anything that I can do to help, I’m here.

    Liked by 1 person

    1. Hello my heart sister Wanda!!!! Thanks so much for your comment today! Your story is absolutely incredible: not one but TWO hospitalizations, two heart attacks, multiple stents, a defibrillator implanted, AND a new baby?!? The kicker for me was when you were told: “Go back and be seated!” I think that “very traumatizing” would be a gross UNDERstatement of how that entire chaotic experience must have affected you – and your whole family.

      I’m also trying to picture how on earth you possibly managed to care for your tiny baby while you were so sick! I believe that being ignored and uninformed and going through all that SUFFERING can truly be a turning point for heart patients; I remember reading somewhere that when something terrible happens, the only good that can come of it is if you’re able to make things better for others down the road.

      You must feel like one of the early pioneers of our Mayo Clinic training – which I believe only started in 2002, one year before you went to Mayo. I’m a 2008 ‘grad’ – and aren’t you and I lucky that we were able to attend in person at the world-famous Mayo Clinic? I understand that due to the pandemic of course, this year’s training from mid-September to mid-October will be online, as it was last year and the year before. It’s good that the WomenHeart Science & Leadership program is continuing virtually, of course (and it’s certainly less costly this way for the organizers without having to pay for our travel, meal and hotel costs), but I do feel VERY fortunate to have had the rare opportunity to actually fly to Rochester and get to know in real life the other wonderful women from our 2008 class over meals, before and after classes (I fondly remember our long pre-breakfast walks along the Zumbro River!) and during all kinds of group functions. That Mayo Clinic experience was truly life-altering for me – and the best part was that the Mayo name and reputation continued to open all kinds of doors when I began doing public presentations about women’s heart health that would have been tougher to open without Mayo’s valuable ‘street cred’ to pave my way.

      Thank you Wanda for weighing in here – I’m so glad you survived that nightmare back in 1999 and, despite all the hardships associated with your diagnoses, that you are still here!

      Take care, and stay safe. . . ♥

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      1. Just a comment about Mayo Clinic: Mayo Clinic is so much more than a center of excellent clinical practice. It is a healing center.

        I had the experience of Open Heart surgery at Mayo Clinic, they saved my life by re-doing a surgery done elsewhere. What I remember most is that as I walked the halls to get all my pro-op tests done, I felt accompanied by angels. Amazing waves of positive energy that dissolved all my fears of what was to come.

        Whatever positive, compassionate intent the Mayo Brothers had when they built that clinic, remains in every building to this day.

        Liked by 1 person

        1. Hi Jill – I don’t know if they were angels accompanying me on my first trip to Mayo, but when I returned home to the west coast, I remember making this strange observation to my sister: “Had I not seen Mayo with my own two eyes, I could never believe that such a place exists on this earth…” There was certainly something ‘other worldly’ about seeing, in building after building, prominent signs reminding every person who passed under those signs that “The Needs of the Patient Come First”.

          Your comment also reminded me of a story I learned there about the history of Mayo Clinic. As you may have heard when you were there, a devastating tornado struck Rochester, Minnesota in 1883, destroying one-third of the town and causing catastrophic injuries among hundreds of residents, dozens of whom died. At the time, Dr. William Mayo ran his medical practice above the town drug store. There was no hospital capable of caring for all those injured victims. During the post-storm recovery, the nuns of the Sisters of Saint Francis convent approached Dr. Mayo with a proposition: they would somehow raise the money to build a hospital if Dr. Mayo would agree to run the hospital when it was completed. He agreed, as long as his two sons (Dr. Will and Dr. Charlie) would join him there. In 1889, the Sisters opened the 10-bed St. Mary’s Hospital with the three Mayo physicians on staff.

          The funny part of this story was a conversation I happened to have during my first visit to Mayo. Our WomenHeart Science & Leadership class spent one full day of our training out at Assisi Heights, the motherhouse of the Sisters of St. Francis (now a retreat centre for Mayo Clinic and a residence for the remaining – mostly very elderly – nuns of that order).

          I asked one of these older nuns sitting at our dinner table that evening about the Mayo Clinic history, and she practically hissed her answer: “Everybody talks about the Mayo brothers! The Mayo brothers! But it was the SISTERS who started Mayo Clinic!!!!!” She seemed utterly exasperated, clearly having tried to set the historical record straight more than once!

          So I’m pretty sure that the sisters would now claim that the “positive, compassionate intent” in building that clinic was their own, NOT the Mayo brothers!

          Take care, stay safe out there. . . ♥

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  3. Excellent educational article. I am trying to get the local and Canadian Heart & Stroke Foundation to adopt the term “Have you ruled out my heart”? and to educate the public to say this whenever they experience chest pain.

    I guess the challenge is also – what tests are they employing to rule it out?

    You’re an excellent writer!

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    1. Thanks Lori for your kind words. I think that “Have you ruled out my HEART?” is an excellent tool for all women to remember – with or without chest pain – to help when reporting troubling symptoms that might be heart-related. We know that women often, for example, don’t use the word “pain” to describe distressing chest symptoms (instead, they may say things like pressure, ache, heaviness, fullness, tightness, soreness, etc)

      Chest PAIN is still the most common heart attack symptom for both men and women, yet some researchers (e.g. Dr. Catherine Kreatsoulas at Harvard whom I’ve written about here) suggest that the way women describe that chest symptom can actually make or break their chances of being appropriately diagnosed in mid-heart attack. She once told me that she’s witnessed first hand in her studies women arguing with the ER physician (“Well, it’s not really PAIN, it’s more like ______” (fill in the blank with a non-pain word!)

      Take care, and stay safe . . . ♥

      PS I must tell you that I really love the “SafeGrate” tool that you invented!! It’s such a brilliant idea (especially for those of us who tend to grate our knuckles instead of the cheese!) that I cannot believe nobody invented one until now.

      Like

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