A Bird in the Hand: Life and Death Decisions in Treatment of SCAD

Sherryn’s Story: A Patient Interviews her Doctor

Spontaneous Coronary Artery Dissection (SCAD) is a little known condition that affects young, healthy people. A SCAD occurs when the inner lining of the coronary artery tears, and instead of blood flowing directly to the heart, blood begins to pool in between the layers of the torn artery, causing a blockage of blood flow to the heart. Little is known about what causes the arteries to tear. Without a known cause, treatment options vary. More research is needed to discover the cause of SCAD before a consensus on treatment can be reached.

SCAD specialists and cardiologists at research facilities are generally knowledgeable about the latest research findings and optimal treatments for SCAD patients, however, the majority of SCAD patients do not live near a research facility. A patient’s onset of SCAD is either so dire that they are taken to the nearest facilty by ambulance, or they do not realize that they are having a heart attack and opt for a smaller facility with a shorter wait time; or as in my case, they are turned away from a larger facility because their symptoms do not appear to be a traditional heart attack.

Instead of interviewing a SCAD specialist, I wanted to get the perspective of the doctors who are most likely to first encounter SCAD in an emergency situation. Doctors who are busy and understaffed and may not have the time to seek out the latest literarure on an uncommon heart condition. I interviewed Dr. Walker, the lone interventional cardiologist at a 150 bed rural hospital who realized, white knuckled and sweaty browed, that my life was in his hands.

Dr. Walker, what were your thoughts when I originally presented at your Emergency Room?

I initially thought that you were a low risk for a heart attack. Dr. Olsen, your ER doctor, had admitted you for low level observation as a precaution. You had presented at a different facility two weeks previously with chest pain and you blood worked showed that you may have had slight damage to your heart. The night before you had participated in a floor exercise in a martial arts class where your opponent flipped you while grabbing your lapel. You had a thorough cardiac evaluation at that facility including an echocardiogram and a stress test. All of your tests were normal. The cardiologist thought that your symptoms and your slightly abnormal blood tests were caused by a bruise to your heart from the martial arts class and you were sent home. 
Two weeks later, when the chest pain returned with shortness of breath, you called the original cardiologist and he dismissed you as a patient with “indigestion or anxiety.” You were unsettled enough when your symptoms continued into the evening that you came to our emergency room. While you were in observation, you had a second slight elevation in the blood work that could indicate damage to your heart, as well as changes in your echocardiogram that could indicate that your heart was not functioning properly. At that point the ER Doctor asked me to take a look at you.

You were very young and otherwise low risk, so I thought that it could be a spontaneous cardiac artery dissection (SCAD). I thought that telling a young healthy person that they needed an angiogram would come as a shock, since you seemed to be feeling better. It probably would have been a shock if you had not fainted in the exam room while I was introducing myself.

I set you up for an emergency heart catheterization. By the time my catheter reached your heart, I could see that one of the three arteries to your heart was completely closed, and another was dissected, but not closed. There was little to no blood flow to the left side of your heart. I set about emergently opening the vessels. I considered open heart surgery for you, but we were at a hospital that did not have a cardiac surgeon and I was concerned that you would get worse in the ambulance on the way to a larger hospital.

I thought about the idea of the old adage of a bird in the hand. “I’m here, I have relative control and knowledge of the situation, and I have the ability to help her right now.”

If I take out my wires and take out my catheter, she may deteriorate right away, she may end up getting shocked multiple times, she might have a major heart attack, she might not live through two surgeries. I thought it best to fix the arteries immediately rather than wait.

I know that I was not an “easy” case. What were some of the difficulties that you encountered?

Your dissections were extensive and involved the entire arteries. They were throughout your circumflex and LAD. My approach was to open up your circumflex artery by stenting it throughout in one surgery. However, since your LAD was not completely closed, I thought it best to leave as little metal behind as possible and only put stents in where the artery was closed, with the hope that by closing off the initial tear in the artery and pushing it in the right direction, that the blood would flow unimpeded to your heart and the rest of the artery would eventually heal itself.

Your artery would not behave. No matter where I stented, your artery kept tearring around where the stents were both ahead and behind the initial tear. Eventually we had to stent the whole thing.

In your case, every time I was optimistic that this time we were going to get it. This time we’re going to fix it. This time is going to be different. This time, she’s going to get better, but no matter what we did, your heart would not cooperate as expected. I still struggle with my approach, but I have been pleased that you never technically had a heart attack, and that your heart function was preserved.

However, even when everything was fixed, it still wasn’t. You still had chest pain. It might be microvascular disease or dissections in the smaller vessels as suggested from your consults at the various research institutions, but a lot of times I couldn’t figure you out. I couldn’t understand why you were still having pain. When we performed a follow up angiogram, sometimes you were right, sometimes there was re-stenosis, or you had another small tear in your artery, or a fractured stent, but other times everything was fine. I didn’t always have a solid explanation for your symptoms

It was ultimately frustrating. Probably on both sides. You want to be fixed and I want to be able to fix you. Typically, in interventional cardiology it is very often straight forward. We see a blockage caused by plaque in a small portion of the artery, and after one or two stents are inserted, the heart is fixed, people do well. It’s where they have such extensive dissections in multiple arteries as you had that present a greater challenge in terms of management; whether you should go to emergency surgery or have extensive stenting, in addition to the procedure itself and the follow up.

In your opinion, what is the largest obstacle providers face in the initial diagnosis and treatment of SCAD?

This brings up another point: there is no clear consensus on how SCAD patients should be optimally treated. It can vary by day, by case, by surgeon, and by facility. I have yet to find any definitive guidelines to spell out the optimal treatment of SCAD patients or any prospective randomized trials that address SCAD.

Some people are treated with watchful waiting, some are stented extensively, some go to bypass, and sometimes the treatment will cross over. For example, the strategy of watchful waiting may cross over to one of the interventional arms of therapy if it’s not going well. I’m always worried about watchful waiting, should the patient do poorly, the patient can end up with sudden death, acute MI, shock, emergency. I think it is a very difficult management problem that we haven’t sorted out. I don’t believe that we have clear cut answers at this point.

I have treated 5–10 SCAD cases, and not only are they are all different, but we’re not always completely sure what the angiograms are showing us. One patient came in with an MI, with shock, with an abnormal left ventricle function, with pain, and she had the appearance on angiography where her entire mid to distal LAD was just shriveled up, a little bit like yours, and the angiogram was actively being misinterpreted. My non interventional partner thought it showed chronic disease. It turned out that it was a dissection and once I fixed it, her left ventricle function improved and it kept her out of heart failure.

Another patient was a young man in his 20’s and his entire LAD was gone due to SCAD. We had a conference about it and we sent him to bypass surgery.

What would you like the medical community to be aware of regarding the initial diagnosis and treatment of SCAD?

It was with your case that I realized that there isn’t much awareness of SCAD. A young woman with symptoms is so unlikely to have traditional coronary disease that they are often dismissed. You had a normal stress test 2 weeks before and were told by a cardiologist that you did not have a problem with your heart.

General awareness of SCAD and the presentation of SCAD needs to be improved. That’s something that you are doing within the patient community, through these stories, and I’m proud of you for that. However, in terms of the hierarchy and the way medicine is arranged, a patient typically presents to an ER doctor or a physician’s assistant or a generalist and largely, they either wouldn’t know of or think of SCAD. It wouldn’t be until a cardiologist was contacted, if your type of case even makes it to a cardiologist, that it would enter into the larger picture of diagnosis to consider.

While SCAD is well established in our mindset as cardiologists, that knowledge needs to be disseminated more widely in to ER doctors and generalists.

As an interventional cardiologist, what would you like the patient community to know?

I would like to let patients know that your doctors are likely always trying to do the right thing. However, in a SCAD patient, it’s not always clear what the right thing is. We need more research and more patient trials. It’s really important to find the right practitioner for you and that might be different in different stages of your disease; how it evolves and how it’s being treated. The skill sets needed and the philosophy on how to treat you best also may change throughout your disease process. I think that we are all trying to do our best for you and the other SCAD patients. It’s important for you to be able to find somebody who you work well with and trust to walk this road together. I think that’s probably the bottom line. With the lack of guidelines, lack of research, lack of real direction on how to best treat SCAD, you need to find someone who is like minded to you and how you want to be treated, because as you’ve noticed, there’s a variety of answers out there.

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SCAD Resources for patients and medical professionals:

The largest SCAD Research program within the US is headed up by Dr. Hayes at the Mayo Clinic. For the latest research and resources for medical professionals, visit: www.mayo.edu/research/SCAD

www.mayo.edu/research/centers-programs/spontaneous-coronary-artery-dissection-scad/medical-professionals

SCAD Research, Inc is the largest contributor to the SCAD research program at the Mayo Clinic. For additional patient resources, to donate to research, or to learn about SCAD, visit: www.scadresearch.org

Dr. Saw is the principal SCAD investigator in Canada, here is a link to her latest research publication: www.ncbi.nlm.nih.gov/pubmed/27417009

SCAD Alliance’s mission is to improve the lives of SCAD patients and their families through education, advocacy, research, and support. For more information, visit: www.scadalliance.org

Dr. Adlam is the principal SCAD investigator in the UK. For information on SCAD research and treatment of SCAD patients in the UK visit: www.scad.lcbru.le.ac.uk

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