Spontaneous Coronary Artery Dissection (SCAD)

Posted by suzzles @suzzles, Nov 8, 2017

Is there a group that has information on new discoveries about SCAD?

Hello @suzzles

Welcome to Mayo Connect and thank you for posting about SCAD, here is the link to a discussion about SCAD on Mayo Connect, https://connect.mayoclinic.org/discussion/cardiac-rehab-1/?pg=1#comment-69480.

I also found two websites that discuss SCAD as well,
https://www.mayoclinic.org/diseases-conditions/spontaneous-coronary-artery-dissection/symptoms-causes/syc-20353711 and
http://www.scadresearch.org/about/
If you are comfortable sharing with us, I’m wondering if you have been diagnosed with SCAD? If so, we would be interested in hearing about your symptoms and treatment. We look forward to getting to know you.

Teresa

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Hi @suzzles,

I wanted to follow up and share this other discussion, https://connect.mayoclinic.org/discussion/heart-attack-at-37/ where @lily1234 and @elizabethmackenzie have written about their experience with SCAD. Mentor @kariulrich comments about the link between SCAD and FMD (fibromuscular dysplasia), which might interest you.

If you wish, you could also post your concerns in this past conversation on Connect, and may be able to reignite the discussion with @laurahcory @kakleon @jennifer99 and others in that group:
– Spontaneous Coronary Artery Dissection (SCAD)? https://connect.mayoclinic.org/discussion/spontaneous-coronary-artery-dissection-scad/

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Hi everyone, I think I recognize some names. Just curious if those of you with SCAD have since found out that you also have FMD?

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Has anyone been diagnosed with Spontaneous Coronary Artery Dissection or SCAD? I need some information about this disease. How often does it re-occur? How often does it cause death? What are the long term outcomes for this disease? The doctor who did the diagnostic angiogram didn’t seem to know much and I am so confused and searching for some kind of answers.

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Welcome to Connect, @geniehl.
You’ll notice that I moved your introductory post to this discussion on SCAD. Please meet @kariulrich @elizabethmackenzie @lily1234 and @suzzles.

Geniehl, please scroll through the previous comments to see some great resources that will help answer some of your questions. But I’m sure you’re here to connect with others. While we wait for others to chime in, please tell us a bit about you. Were you recently diagnosed with SCAD? Have you considered going to a specialist who is experienced in SCAD?

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@geniehl welcome! SCAD is such a life changing event, and your questions are valid. I know there has been a lot of research done at Mayo and with Dr. Jackie Saw in Canada. Here is a good link that may answer some of your questions :https://www.mayoclinic.org/diseases-conditions/spontaneous-coronary-artery-dissection/symptoms-causes/syc-20353711 Also please take a look at Women Heart: http://www.womenheart.org/?page=Support_SCAD I dont believe all the answers to your questions will be found as this disease is just gaining momementum in research. I know several patients that have had multiple SCADs and are doing well now, however they also are very proactive in the prevention of secondary heart issues. Also there is a group of SCAD patients that have an underlying vascular disease called Fibromuscular Dysplasia. Did you doctor mention that to you? I am sure other SCAD patients will join in on this conversation. Would like to hear more about your experience if you would like to share. Again welcome and I am so glad you found us!

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@geniehl

I was just diagnosed, by angiogram, with spontaneous coranary artery dissection. I was told that it was uncommon and little was known about them. I will be having my first visit with a cardioligist on Jan. 26. What kind of questions should I ask?

Jump to this post

I would suggest asking if they plan to monitor the dissection and let it heal on its own, or a possibility or a stent. Also would ask how many SCAD patients does your cardiologist see a year? Also should you be on aspirin therapy or another anticoagulant. What can you expect for monitoring and prevention. Is there any other underlying vascular disease that may be the cause of scad such as FMD (Fibromuscular Dysplasia). One other thing you may want to discuss is doing cardiac rehab. I would recommend every scad patient go through cardiac rehab for both peace of mind and understanding what symptoms you have under supervision… does that make sense to you? I hope I did not overwhelm you with thoughts and questions! Please keep us posted how your appointment goes, and know we are all here leading up to the appointment. I know it can be overwhelming leading up the appointment, so please feel free to vent, cry or laugh… I know the emotions of this diagnosis can be all over the place. May I ask what state you live in? I am in Minnesota and have Mayo Clinic Rochester an hour away, so I am very fortunate.

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@geniehl

I was just diagnosed, by angiogram, with spontaneous coranary artery dissection. I was told that it was uncommon and little was known about them. I will be having my first visit with a cardioligist on Jan. 26. What kind of questions should I ask?

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Thank you so much for giving me such good questions to ask. My brother and Sister in law live in Minnesota. A small place called Albert Lee. Anyway. I was placed on aspirin therapy at the hospital. This heart thing came right out of the blue. I’m 64 years old, and although I have a myraid of health problems in my back, legs, and liver, but I was still able to do a rigerous workout at a local pool. (2 hours everyday) and felt quite healthy at the time. Now I’m worn out after a shower. I live in Utah and there hasn’t been a doctor I’ve found, out here, that seems to know much about SCAD.

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@geniehl

I was just diagnosed, by angiogram, with spontaneous coranary artery dissection. I was told that it was uncommon and little was known about them. I will be having my first visit with a cardioligist on Jan. 26. What kind of questions should I ask?

Jump to this post

I was diagnosed with scad at 61 years. Is there anyone diagnosed with this condition near this age. Most patients seem to be younger.

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@geniehl

I was just diagnosed, by angiogram, with spontaneous coranary artery dissection. I was told that it was uncommon and little was known about them. I will be having my first visit with a cardioligist on Jan. 26. What kind of questions should I ask?

Jump to this post

HI @coughlan and welcome to Connect. That must be awful being diagnosed with this condition. You may have noticed I moved your post to this existing discussion on SCAD so that you can connect with others with this condition. Simply click VIEW & REPLY in order to get to your post.

I wanted to tag fellow Connect member @geniehl who is 64, and may be able to offer you support.

How long ago were you diagnosed? How are you feeling?

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@ethanmcconkey

HI @coughlan and welcome to Connect. That must be awful being diagnosed with this condition. You may have noticed I moved your post to this existing discussion on SCAD so that you can connect with others with this condition. Simply click VIEW & REPLY in order to get to your post.

I wanted to tag fellow Connect member @geniehl who is 64, and may be able to offer you support.

How long ago were you diagnosed? How are you feeling?

Jump to this post

I was diagnosed in February 2019.

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@geniehl

I was just diagnosed, by angiogram, with spontaneous coranary artery dissection. I was told that it was uncommon and little was known about them. I will be having my first visit with a cardioligist on Jan. 26. What kind of questions should I ask?

Jump to this post

Hi @coughlan,

I wanted to follow up and share this other discussion, where @lily1234 @elizabethmackenzie @suzzles have written about their experience with SCAD.
https://connect.mayoclinic.org/discussion/heart-attack-at-37/

If you scroll through previous comments, you will find some great resources – @kariulrich comments about the link between SCAD and FMD (fibromuscular dysplasia), which might interest you.

While we wait for others to chime in, please tell us a bit more about yourself. Have you considered going to a specialist who is experienced in SCAD?

REPLY

I was just diagnosed, by angiogram, with spontaneous coranary artery dissection. I was told that it was uncommon and little was known about them. I will be having my first visit with a cardioligist on Jan. 26. What kind of questions should I ask?

REPLY
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