Connect
Coronary Artery Ectasia (CAE): Want to hear from others
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
Like
Helpful
HugInterested in more discussions like this? Go to the Heart & Blood Health Support Group.
Connect
Very interested to learn more because I was recently diagnosed with Congestive Heart Failure
I would like to learn more about congestive heart failure.
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
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.
-
Like -
Helpful -
Hug
1 ReactionHi,
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
I can understand your desperation because doctors know so little about this condition. I have coronary artery ectasia is 5 or 6 vessels in my heart. I was diagnosed in 2011 so I have survived for nearly 13 years without issue. I also had a popliteal artery aneurysm behind my knee. Basilar artery dolichoectasia in the vessels of my brain as well as an aorta that is 4.4 CM. You need to understand that artery ectasia can be widespread and you won't know that because your specialist is focused on one part of the vascular system. I have little to no atherosclerosis. I am on blood thinners. I take several natural substances to help to stabilize my arteries. My arteries have not grown at all in 14 years. I take Curcumin, vitamin d3, zinc, taurine, arginine, and quercetin. I have just read in a medical journal that rutin, which is a precursor to quercetin is known in studies to strengthen arteries. I am not a doctor. I have no angina or heart pain. I am 67 years old. I am not on statins and will not take them. I was having stoke symptoms and my cerebellum was loaded with infarcts because I have a hole in my heart. I see quite a few people diagnosed are not on blood thinners. There is a risk, because if you have a stroke on blood thinners, it can be a worse outcome...however if you have ectasia you should be on blood thinners. The distended arteries have slow flow and grow clots just like veins. I had major clotting issues including two PEs. I am on Xarelto .
In addition to the natural substances mentioned above I use CBD, THC and Sumac Berry, I have a theory that the ectasia was stabilized in my 20's with the combination of THC and tetracycline. Antibiotic therapy is in testing currently along with certain cancer drugs. You cannot physically fix the arteries so new therapies have to be found. Inflammation is a key and I was also sent to a Rheumatologist.