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by Carolyn Thomas ♥ @HeartSisters
Dr. Juan Carlos Kaski, Head of the Cardiovascular Sciences Research Centre, St. George’s University of London in the U.K. explains an unusual cardiac diagnosis here that I happen to share: Inoperable Coronary Microvascular Disease (MVD).
When I was at Mayo Clinic five months after my heart attack, cardiologists there referred to MVD as a “trash basket diagnosis” – not because the condition doesn’t exist, but because this disorder of the tiniest blood vessels in the heart is so often missed entirely. A correct diagnosis usually happens only after all other possible diagnoses are thrown out. It’s far more common in women and in people who have diabetes. It’s treatable, but can be very difficult to detect.
Traditional cardiac tests – even coronary angiography, widely considered the ‘gold standard’ diagnostic tool in identifying potential heart attacks – usually miss MVD entirely. Dr. Kaski explains that 40% of patients suffering the severe chest pain of MVD have “normal” angiograms. Unless a cardiologist has experience with cases like mine, these patients can be misdiagnosed – often over and over again – and sent home despite truly debilitating cardiac symptoms similar to your basic Hollywood Heart Attack.
According to Mayo Clinic experts:
“The narrowing of these very small blood vessels in the heart means they can’t expand properly when you’re active. As a result, you don’t get an adequate supply of oxygen-rich blood to the heart muscle.
“This inability to expand is called endothelial dysfunction. This problem may cause your small vessels to actually become smaller when you’re active or under emotional stress. The reduced blood flow through the small vessels causes chest pain and other symptoms similar to those you’d have if you were having angina or a heart attack.”
On this video, Dr. Kaski also discusses the difference (and possible similarity) between another non-obstructive diagnosis, Prinzmetal’s Variant Angina (a spasm disorder of the coronary arteries) and MVD.
What triggers coronary microvascular disease is not known, but cardiologist Dr. Noel Bairey Merz of Cedars-Sinai Medical Center in Los Angles suggests that high blood pressure during pregnancy might predispose some women to the condition.
(Not coincidentally, I too was diagnosed with pre-eclampsia during my first pregnancy – typified by spiking high blood pressure. And we now know that women with pre-eclampsia are up to five times more likely to develop heart disease compared to women whose pregnancies are uneventful).
Typically, the narrowings in small blood vessels are caused by fatty plaque, the same stuff that clogs bigger vessels where most heart attacks begin, explains Dr. Bairey Merz. But in MVD, plaque doesn’t form a mound or bulge. Instead, it uniformly coats the inside of these tiny vessels. This reduces the space for blood flow and makes the arteries stiff and less able to expand in response to exercise or emotional stress. She explains:
“Women are relatively more like to suffer from plaque erosion and distal coronary embolism, compared to relatively higher rates of plaque rupture and proximal thrombosis in men.”
Currently, Dr. Bairey Merz believes that the best diagnostic test for detecting MVD may be something called coronary reactivity testing. This angiogram-like test lasts 60-90 minutes and allows doctors to see how very small vessels supplying the heart respond to different “challenges” from medications.
She recently added this comment to an article called “Myocardial Infarction Re-Defined“ in the American College of Cardiology’s In Touch blog:
“A majority of patients with microvascular coronary dysfunction also have atherosclerosis evidenced by intra-coronary vascular ultrasound (IVUS).”
See also:
- Misdiagnosed: Women’s Coronary Microvascular and Spasm Pain
- My Love-Hate Relationship with my Little Black Box (how wearing a portable TENS unit has reduced my use of nitroglycerin for MVD chest pain)
- How Women Can Have Heart Attacks Without Having Any Blocked Arteries
- Small Vessel or Coronary Microvascular Disease – from Mayo Clinic
- this 5-minute video about Joan Jahnke of South Carolina who went to Emory Heart & Vascular Center to have her MVD appropriately diagnosed and treated
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Thanks for posting the very interesting video with Dr. Kaski. It was nice to see CAS recognized. All of my six heart attacks have been due to Coronary Artery Spasm, which involved spontaneous intense angina, ST-Elevation on ECGs, and some MIs which were caught naturally on angiograms.
I never had to have coronary reactivity testing – it was a very obvious diagnosis. I have been told by two cardiologists that I may also have MVD. One time an interventionist tried to stent an LAD spasm, it spasmed even worse, and they could not get their equipment/guidewire back out of my artery. After an hour battle with about every type of vasolidating drug available administered via IC or IV, it finally released. Quite traumatic to say the least, and was not a “stent and go” procedure but a few days in ICU & down before heading home. Yes, tons more research needed on CAS, MVD, SCAD for sure.
Many thanks to Dr. Kaski and my doctors at Mayo (and Emory, etc.) for their dedicated work and desire to find answers for better patient outcomes.
Yikes – what a traumatic experience you describe with your spasm. Thanks for reminding all of us that these are patients being treated here, not diagnoses.
One more clarification, Carolyn ~ My comments (BELOW) about the insula are related to MVD dysfunction or symptoms vs standard cardiac patients. There is NO information I have that indicates MVD originates in the brain. I am making the point that it is possible that along with direct cardiac risk factors, there is a brain interplay component that demonstrates symptoms that seem to not make sense, given the “gold standard” angiography model giving us the “you’re fine, it must be in your head” result.
On the lipid front, I have been diagnosed with LP(a), as has Joan Jahnke. This is a genetic predisposition of lipid and atherosclerotic accumulation and MI/Stroke risk. Even though she and I both have clear coronaries as seen in a cath, we both have demonstrated abnormal endothelial function with the (special) provocative portion of the cath.
I have had no children, so pre-eclampsia didn’t “cause” my MVD nor reveal it. My father did have CHF and type II diabetes, so there is a CAD family history. I suspect the LP(a) came from my mother’s side.
As we all have wondered about, there is no full universal terminology for this dysfunction or syndrome. It can be titled endothelial dysfunction (which pops up as terminology in a variety of disease processes), it can be microvascular dysfunction, microvascular disease, ischemic heart disease, microvascular ischemia or microvascular ischemic disease, small vessel disease, or the old standby, Syndrome X, ad infinitum.
Carolyn, Thank you for writing on this topic!
I would like to suggest that you revise this posting in the main body, to include the video made by Dr. Habib Samady at Emory along with patient, Joan Jahnke. It supplies even more validation. In the description as “treatable”, there is debate on how the outcome is depending on the “stage” of the disease.
According to my own cardiologist, some women experience improvement with exercise, but as you know, some women (even former, young, athletic individuals who were in their prime when the symptoms arose, find that exercise worsens their function. (Sort of like cancer treatment…you’ll be just fine – if the treatment doesn’t kill you first!). MVD has a higher rate of MI and sudden cardiac death (SCD). The reason I presume is oxygen starvation to the heart. Nitro and Xanax are my trustiest tools. The vessels can become “irritable” and till they are settled down with adequate medication, they keep sending symptoms of shortness of breath, chest pain and others.
As a first hand patient with experience, I can say that with exercise, I can spend my energy that way (with meds) or I can spend it living life. Hard to have energy for both in my experience. Even with exercise, I find that emotions (happy AND sad AND angry AND stressed) can lay me out flat … E.R.-style flat. That doesn’t make me “crazy” though, the “anxiety” presumption.
A recent article on meditation demonstrates (in my own opinion) why it helps cardiac patients and MVD patients:
Note the focus on the insula. The insula is the “traffic cop” of the autonomic, physiological and emotional systems in the brain. It touches the amygdala – the seat of emotions. Per WISE researcher Dr. Richard Cannon in 2004, differences were noted in the insula response of MVD patients vs standard cardiac patients; however the research was not followed up. It was as if the insula (and I can’t remember if it was the left or right (I think right), showed that it wasn’t properly responding as compared to “normals”. Dr. Cannon postulated that this might have to do with abnormal pain “perception”.
Amateur that I am, further reading that I did of a textbook chapter on the insula, written by Dr. Bud Craig – Barrow Neurological Institute, convinced me that this is the primary source of where our body symptoms and emotions and cardiac symptoms is “off”. How that comes about and why is still an open question. Is it heart or it is brain? As the famous old commercial goes: It’s two, two, two mints in one! It’s both. If you have an hour, watch Dr. Craig’s presentation to Swedish neurological doctoral fellows – about a one hour lecture. It ties together after about 30 minutes.
Last night, I fell asleep with my hot water bottle on my lap. I awoke with pain on my lap, shortness of breath and chest pain. That was not “emotional”. It was an abnormal cardiac and vascular response to my pain. My brain sent the brain alarm of the burning hot water bottle, but signals also went to my vessels and heart, as it tried to cope with this unexpected demand. Normals would just feel the burning of the hot water bottle and throw it off, right? This was not “emotional”, because I was asleep!
Understanding this helps you understand WHY the meditation can help – it strengthens the insula! Ditto for EMWave training. You can help to compensate behaviorally and not just with medications. But you do need the medications in hand. It can be too life threatening to ignore those.
As the last piece of my commentary, let me direct people to EMDR and Francine Shapiro. For those with a baseline of all emotionally provocative history in your lives – perhaps abuse, or stress, or foreclosure, a traumatic E.R. or hospital experience (or many of them) that have left you feeling that you were alone and dying, or any other emotionally demanding experiences, EMDR can neutralize and vaporize those, so they no longer “consume” emotional space in your head – and the function of the insula. That can be a good thing when you are “compensating” for your MVD or cardiac dysfunction.
Read this New York Times column, written by Dr. Shapiro:
It is an ongoing column and there are several other columns. In my own experience, EMDR helped rid me off the baggage of this, to free up my cardiac “space”. This can also help with “little t” trauma – nothing earthshaking, (maybe being teased in school) or whatever stick in your craw. It can be miraculous and freeing. LIfe changing. Find a therapist who is certified here.
Thank you, Carolyn, for the opportunity to share my own thinking on this subject.
Thanks Mary – you are a true student of this mysterious diagnosis. Not surprising for those of who live with these symptoms day in and day out. I admire your scholarly zeal.
The Emory/Jahnke video, by the way, was already included in the recommended links list at the bottom of my post.
Speaking of which, thanks for the links here, including the meditation study (albeit small – just 23 meditators studied, average history of meditating = 20 years! – which means that if I start meditating today, I might start seeing some good insula folding numbers by the time I’m 80!) and the info on EMDR (Eye Movement Desensitization and Reprocessing), a therapy that’s been successfully used in patients with Post Traumatic Stress Disorder.
And as we MVD patients know, anything that’s shown to be helpful might just be very good.
Well, time to get cracking, then
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I can’t hear you . . . I’m meditating . . . .
Carolyn,
Any discussion on how they differentiate patients with MVD who likely have plaque build up on those small vessels and someone like myself and others we know who have 0 risk factors meaning no high blood pressure, very good cholesterol numbers, exemplary healthy life styles etc. In essence have no disease, but rather a condition that to me seems more akin to an auto immune disorder.
Other than the patient with MV disease possibly being able to improve their condition with better life style choices our treatment plans would be the same I guess, so maybe that is why no “splitting hairs”? I should be content that there seems to be a greater awareness of MVD in general, right?!
Hi Lauren – by now, my personal (and very unscientific!) observation is that there is simply no such thing as somebody with “zero risk of heart disease”. It seems every week, we’re learning of yet another culprit identified by scientists that can be added to the growing list of suspected cardiovascular risk factors (consider pregnancy complications like pre-eclampsia, for example, which we’re now being told is linked with a 2-3 fold increased risk of subsequent heart disease, usually years and even decades down the road). Last week, sugary soft drinks were implicated, too. Next week, it will be something else.
If you watch the Emory/Joan Jahnke video, you can appreciate the causal mystery of the origins of MVD: is it viral insult? Toxins? Hormones?