Uncommon and under-diagnosed. That’s how an expert now describes the heart disorder that has afflicted Shelley Simonton of Woodstock. In technical terms, it is spontaneous coronary artery dissection. Shortened: SCAD. It is, to some, a killer. To others, it comes once, wreaks havoc, departs quietly. For Simonton, SCAD is the cause of three heart attacks and many more scares. It’s why Simonton, 42, mother to a young girl and younger boy, has recorded the videos. Just in case.
Early in 2007, she started having stiffness in her neck and jaw.
When the symptoms worsened while she was at school, teaching her seventh-graders at Northwood Middle School, Simonton walked herself to the school nurse. Her mind flashed to her grandpa, who had died of a heart attack in part because he’d stubbornly refused his wife’s insistence on calling an ambulance.
The nurse felt a “thready” pulse, meaning it was tough to perceive, and called for an ambulance.
In the doctor’s office, the EKG and an initial cardiac enzyme panel – a test checking for heightened enzyme or protein levels, which can signify a heart attack – showed nothing irregular. Simonton was almost sent home, except that, given her family history, the doctor decided to opt for a second cardiac enzyme test, which turned up elevated enzyme levels.
She was transferred from Centegra Hospital – Woodstock to Centegra Hospital – McHenry, where doctors ran tests and determined that a spasm had caused her coronary artery to close.
“So it was officially a mild heart attack, and he said it was caused by a vasospasm,” Simonton said.
It was – as Simonton would find out much later, only during her second, much more serious heart attack – the wrong diagnosis.
Simonton is healthy. She is not overweight. She does not smoke. She does not have high blood pressure, nor high cholesterol. When her first heart attack struck, she was a healthy-eating 35-year-old seven months removed from the birth of her second child.
Then, she got healthier. She got back into exercising. She watched what she ate, even more so. She ran – in the summer of 2011 – a half marathon.
Then, on January 18, 2012, after a day of teaching, she again walked herself to the nurse after school. Her neck had been feeling tight the last couple weeks, a twisting on both sides.
Today, it was worse. And today, it was accompanied by a sinking intuition.
“I had this with my first one, too. ... I just had a feeling of something is really wrong,” Simonton said. “And that’s where my grandpa comes back and he’s like, ‘Don’t wait this out. You know better than that.’”
The nurse called 911. An EKG in the ambulance showed an elongated S-wave, prompting a re-direction to Centegra Hospital – McHenry and the cath lab.
There, Simonton was not responding to medicine. Her enzyme levels were continuing to climb. And, though her doctor suspected it was another spasm, he said something for which Simonton, to this day, remains thankful. He said he wasn’t sure what to do next.
“I’m grateful that he had the guts to say that,” Simonton said. “Because it could have gone a different direction.”
One option he presented was to fly Simonton on a helicopter to Loyola University Medical Center. She accepted. And, as if on cue, her landing at the Chicago hospital was met almost immediately with her first bout of intense, stabbing chest pain.
During an angiogram, doctors found a little tear in an artery. They diagnosed SCAD. Simonton needed two stents.
SCAD refers to a tear inside the inner wall of an artery, which can cause two streams of blood. Blood flowing on the outside of the wall can clot and cause blockage of the flow to the heart, causing a heart attack.
It wasn’t that long ago, Dr. Sharonne Hayes remembers, that the condition was so overlooked, many doctors believed they only saw one case their entire careers.
That was before they started looking.
Recently, and especially in the last three years, research has started into just how many heart attacks are the result of SCAD. The results are changing the condition’s perception.
SCAD is now believed to be the cause of between 1.5 and 4 percent of all heart attacks. One study showed that 40 percent of heart attacks suffered by women under the age of 40 are a result of SCAD, said Hayes, a Mayo Clinic cardiologist and the founder of the Women’s Heart Clinic in Rochester, Minnesota. It has led her to wonder, as awareness continues to spread, whether the condition will end up as the number one cause of heart attacks among that demographic.
“I don’t even call it rare anymore,” Hayes said. “I call it uncommon and under-diagnosed.”
So far, identifying SCAD in a patient only means so much. But it does carry some benefits, treatment-wise.
Whereas treating your typical heart attack by placing a stent – a small tube used to keep open narrow or weak arteries – comes with a success rate well over 90 percent, the success rate of such treatment falls to 60 to 65 percent when the patient has SCAD, Hayes said.
While every case is unique, Hayes advocates a “watchful waiting” form of treatment. If the flap created by the tear remains open long enough, SCAD heart attacks can sometimes heal themselves.
This, doctors now believe, is what happened to Simonton after her first heart attack.
Struggle to recover
At Loyola, a surgeon placed two stents in Simonton’s left anterior descending artery.
When she left the hospital, Simonton struggled to walk.
She at first declined to enter rehab, deciding to regain her strength on the treadmill in her basement. But every twinge, every flutter of her stents, filled her with fear.
“It’d be paralyzing fear,” Simonton said. “I was just terrified.”
She gained weight. Depression set in.
Getting put in rehab at Centegra – Woodstock was key. Simonton’s health slowly returned. She was back in school about a month after she left the hospital, finishing out the school year doing half days.
Dealing with the disorder
Simonton’s third heart attack came at the beginning of the school year. The Friday before school started in the fall of 2013, she felt a tightening in the muscles in the back of her head, her scalp squeezing upward.
Her doctor at Loyola didn’t think it was heart-related. He was wrong.
“Sure enough, one of my stents had started to close up,” Simonton said. “So he put one in to open that one. And then I had another tear off a tributary artery of the [left anterior descending artery]. And he had to use two stents to fix that.”
Simonton still made it to school Monday, when teachers were due to report. When students arrived on Thursday, she was back full-time.
“I used it as a teaching tool,” she said. “I stressed to the kids, you know, life is sometimes going to hand you a hand of cards that just stinks. You’ve got to make the best of it and not let it control you.”
Simonton doesn’t know whether another heart attack is around the corner. SCAD research, headed up by Hayes three years ago after about 70 SCAD survivors found each other online, is still in the early stages.
Hayes hopes more answers are coming.
“The Holy Grail is finding what causes it,” she said. “And then, since we weren’t able to prevent the first one, do we have anything to prevent the second one.”
Meeting SCAD survivors and the family members of those whom the condition has taken continues to motivate Hayes. She was in Warrenville recently for the third annual 5K SCADaddle for Research.
So was Simonton.
“It was the first time I had ever met another survivor,” Simonton said. “Just shaking that first survivor’s hand, I was in tears.”
To keep stress down, Simonton has given up things like coaching her kids – her daughter, Chase, 10, and son, Jack, 7.
Instead, more than she ever has, she cherishes every day spent with her husband and kids.
And she’s made videos to leave to her kids, just in case. For their graduations, their wedding days, the birth of their first children, Simonton has guaranteed that she will be there.
“I want them to know, if worst case happens, that it wasn’t my choice,” she said. “And I will always be there with them.”