For those of you who’ve experienced SCAD, I have a question… and feel kind of dumb asking it. Are we considered to have heart disease?
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I think we can say yes we do, now that Mayo is researching us! I’m partly joking, but it is a very good question.
I remember arguing with my insurance carrier about whether I had heart disease. They would say yes, because I was on Plavix and a statin drug. So now that I’ve met women who’ve had repeat SCADs, I firmly feel, yes — what we have is coronary artery disease.
But, when I talk with other women at WomenHeart events, they generally perceive me as “fixed,” since I had bypass and don’t have high cholesterol, blood pressure, etc.
What do you think?
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I agree that we have coronary artery disease, so maybe when you get right down to it that means we have heart disease. I asked the question because it sometimes bothers me as I look for a “camp” to be part of. I do some volunteering with the Go Red for Women campaign of the American Heart Assoc, and I think I fit there. But I’ve had 3 dissections in my coronary arteries, and feel like that’s different than a more typical heart patient. I have a general disease of the arteries, called FMD, so am not just a heart patient either.
I assumed there was a black and white definition of what heart disease is, and I wonder if it applies to me. But, as is the case in general with SCAD and heart attacks in our 30’s, not much is black and white!!
Thanks for your thoughts Katherine.
The FMD link is interesting. I haven’ t been tested yet, but plan to. It surprised me to see on the FMDSA website not a single mention of coronary arteries. A cardiologist I ran into at a cardiology event referred me there, but when I checked the site, nothing.
Has anyone mentioned whether there is a distinction between the types of arteries involved with FMD?
And I agree. It is hard to know where to cast your lot with volunteerism. Individual style, the audience, and organizational mission have to mesh so we each can help the most people.
FMD seems to be most commonly found in the renal (kidney) arteries and in the corotids. There are a few different types of FMD but the most common creates the appearance of a string of beads on angiography. The middle layer of the artery is abnormal and makes the artery wall bumpy and it creates webs within the artery. Blood then has a hard time getting through. It can lead to blockages, clots, anneuryms and dissections.
It’s not very common at all in the coronary arteries. I know of a few other people, and am actually in a study with a doctor in Canada who is researching FMD of the coronary arteries. My coronary arteries are not bead-like; they are skinny, really bendy and branch off in odd ways. But I have beading in several other arteries in my body — the corotids, renal, and several other places. It was diagnosed at Mayo by doing a CT of my body.
Because there’s so little out there known about FMD, I worked with a woman I met thru an online support group to start a Midwest women’s support group. You can check out our website if you like: http://www.mwva.org
I so wanted to help create support and information for FMD and/or SCAD because nothing was out there about either condition. I was so frustrated. So, it’s great to see both subjects getting more and more attention. And it’s due to the internet connections we’ve made! I “met” you and Laura on WomenHeart around the same time as met the other woman, Kari, with FMD.
I can email you some articles if you’re interested in more about FMD. I strongly encourage you to be tested. It can start with your general MD or cardio listening to the corotid arteries, and listening to the abdominal arteries. If the blood sounds swooshy, or sounds turbulent, there is cause to look further. Ultrasounds are a great test as well.
Hi again. Sorry for the delay. I can’t keep my virtual communities straight lately!
Thank you for the link and the article by email. That is extremely interesting stuff. Sounds like you are on the brink of some great developments in the FMD arena too.
When you describe the testing, I remember how my cardiologist carefully listens to my carotids at my visits. I’d never thought to ask why. A few years ago, I had a carotid doppler after a few fainting spells that were attributed to my PFO and eventual TIA. But now it makes me wonder. I should pull that report just to see exactly what it says. I suppose if there were irregularity beyond plaque or blockage they would have said something. Never hurts to ask tho!
Thanks again Jennifer. I am definitely following up on both FMD and the connective tissues question. My focus has been SCAD so intently, I have neglected myself!
Hi! So, what is PFO? It’s amazing how many terms there are for things. It’s interesting to learn a lot of this medical stuff, but kind of difficult being the “oddity” isn’t it?! We look healthy and don’t fit the bill of typical heart attacks, TIAs or strokes, etc.
Can’t believe another week has nearly passed.
PFO is for patent foramen ovale, and it is a flap valve hole in the heart. An ASD is a pure hole, but the PFO opens to let unfiltered blood pass only under certain conditions. I think 1/4 of the population have them with no symptoms or problems, but they’ve found that people who have migraine with aura may have risk of stroke if they also have a PFO.
Because I had a history of migraine with aura and then what was diagnosed as a TIA, I had the PFO closed with an Amplantzer device, like a clam shell. The fear is that the TIA is a precursor to a big stroke, so it was a better safe than sorry decision. My overall health is greatly improved after having it repaired, that’s for sure. My migraines are manageable and much fewer, and i’m just a lot more healthy. seems strange that it would be related, but I used to have sinus infections and bronchitis several times a year, and now I don’t. My life is much improved to not be put to bed with migraines several days a month!
Will tell you that this is another one of those areas doctors are divided on. Many think it is quack medicine. A pediatric cardiologist did the PFO closure. He was fantastic, and my internist agreed with doing it, but my cardiologist thought I was nuts.
Hope you’re well.
Does SCAD always heal naturally? Or, can it heal improperly if left alone?
Hi @lila. Here’s more information about treatment for SCAD http://www.mayoclinic.org/diseases-conditions/spontaneous-coronary-artery-dissection/basics/treatment/con-20037794.
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