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

Posted by vicks @vicks, Mar 19, 2018

Desperately wanting to hear from someone who has experienced this rare artery disease Ectasia...I unfortunately have it in 5 Arteries with only a50%blockage in one...it’s not in my Aorta so far..thank god,
Is there any way to diagnose how and identify this disease and anyway it can be cured...I am a 67 old male non smoker and reasonable fit or at least was I thought...totally caught off guard and non getting much help...other than it’s manageable with medication.....thanks Gary

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

mseldridge37 | @mseldridge37 | Aug 20, 2021

Very interested to learn more because I was recently diagnosed with Congestive Heart Failure

mmtookie | @mmtookie | Aug 29, 2021

In reply to @mseldridge37 "Very interested to learn more because I was recently diagnosed with Congestive Heart Failure" + (show)

I would like to learn more about congestive heart failure.

mjw4 | @mjw4 | Nov 30, 2022

I have been diagnosed with CAE and was told that they could not fix it but I am seeking a second opinion. I have had extreme chest pain and shortness of breath and numbness in my arm daily for 4 months. Any thoughts would be appreciated. Thanks

tcsurvivor4 | @tcsurvivor4 | Dec 22, 2023

In reply to @crcurtis13 "@vicks Very early into my potential diagnosis of CAE. Wondering if you have any updates since..." + (show)

Following as I have just been diagnosed as well with CAE. 55 yr old female, cancer surgery and 7weeks of radiation this past summer. Cardiologist basically told me nothing about this condition other than I’ll be on blood thinners and I have large coronary arteries. Would love to find others who have experienced this as well and hear about how to live a healthy life with this. I’m just left with a lot of questions at this point. As if cancer (still have tumor which is stable for now) wasn’t enough..now I have this to worry about.

donna60 | @donna60 | Jan 11 12:22pm

Hi,
Just found this discussion.
I was diagnosed with CAE October 2022. I have it in my LAD.
Research is minimal and I have wanted to connect with others who have the same diagnosis.
I am in a beta blocker, statin and low dose ASA for life.
Enjoyed reading all of the posts though many are old.
Donna