Coronary Artery Ectasia (CAE): Want to hear from others

@vicks Hi I had a Coronary artery disease that n 1996 Before surgery the stress test showed 95% blockage of my coronary artery,85%,@80% at this time I had the nitroglycerin patch for pain till my surgery Its now 23 yrs @no problems ,so as Martin said try not to worry about it that much as this is your stress your putting on yourself.I hope by now you,he found a Dr.that is familiar with Ectasia Good luck.

Hey Vicks. Same boat -severe CAE in all 4. My arteries in my angiogram looked liked 4 fat lumpy worms. I am totally dedicated to living a healthy life now. I'm dropping 35 lbs, and brisk walking without overdoing is good for the problem. Medications are a must (Plavix, aspirin, a statin, BP meds) for the rest of our lives. And if you're like me, a change to your life itself, with less stress , would help. The doc said it is doable to live with this condition, and to maybe even have a slight reversal of the condition.

Thanks for your Reply.....yes seems standard with Cardiologists to make it manageable for the rest of our life....without knowing much about it...really ...ya not happy with this prognosis...they really don’t know if it’s spreads or is it treatable....they say it’s rare CAE but how many people have it out there and don’t know....I certainly don’t know how I got it...but that being said there has to be other heart surgeons and cardiologists and research departments that have actuallydealt with this....I’m very proactive...and really believe it’s the major culprit cronic Inflammation ....upon which I just finished seeing a top Rheumatologist who has put me on inflammation drugs..Methotrexate and folic acid...to be followed by another injection of xxxx if blood work dictates...and then retesting to see if any change...It’s Amazing that more isn’t out there in the journals but will continue the journey....trying to eliminate Stress...😊just a note I’m also on a powder supplement called Cardioflex and Q10/100
Best of luck....continue the Healthy lifestyle...take it easy with the beer..haha 🙏Gary

I got a 2996 score on the Agatston test. I got scared, and I successfully pleaded to my doctor to authorize an Angiogram.
Before the test, I met with the procedure doctor and he said possibly the majority of the calcium was in the walls of my arteries, and
not in the arteries themselves, which would cause a blockage or narrowing. That turned out to be the case, and he said a stent was not needed.
However, the angiogram did show a significant amount of ectasia in the top sections of the 4 main arteries. A serious and rare condition,
affecting 5% of heart patients,it's the enlargement of the arteries to at least 1.5 times their regular size which can create a slowdown of bloodflow, and most seriously, clots. It is best managed by diet, exercise and medication, especially aspirin and Plavix. I'm on BP meds and a statin too. And I have to lose 35 pounds.

I would be grateful to hear from others who have this condition, and how they are dealing with it.

Hi @dpframing,

I merged your message about finding others with CAE with this discussion so that you can reconnect and continue the conversation with members in this group. I'm tagging @seaera too, so that she can join in with her concerns as well as any insights she might have.

You might be interested in reading this published article which outlines some updates on the current knowledge of CAE:
https://journals.lww.com/coronary-artery/Fulltext/2016/08000/Coronary_artery_ectasia___new_insights_into.12.aspx

Recently Diagnosed. I'm anxious to hear about others experiences as well.

Hey Vicks,
Read my posts. I have CAE also.
Domenic

@vicks

Very early into my potential diagnosis of CAE. Wondering if you have any updates since 2018. 43yo, male, very athletic and healthy, CAE in 3 coronary arteries and not sure my cardiologist has ever seen anyone like me. Did you get any answers?

My daughter was recently hospitalized with Congestive Heart Failure; can this condition be reversed, with proper diet and exercise? She also has adult-onset diabetes. She is 53, and up until this diagnosis, was a smoker. Her doctor will not provide a prognosis, however, she has improved from a level 4 to between a level 2-3.

no this is nothing out of the ordinary...your cardiologist if he is properly trained will know of such conditions...if clots reach a certain stage than they should be stented or you could also go for bypass surgery