1. < Heart & Blood Health

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.

nhectasia | @nhectasia | Mar 16 9:18am

Don't expect too much from a rheumatologist on this even though I would recommend seeing one. Be aware that in some case this is systematic and other arteries are affected. In addition to 5 coronary arteries I have a dolichoectatic basilar artery in my head. This is very common. I also had a popliteal aneurysm. Doctors find it one place and focus on that missing other potential locations. I am 67 and was diagnosed for CAE in 2010 and Basilar artery ectasia in 2018. None of them have increased in size which is the good news. You need to down regulate mpp-9 and mmp-2. Look into "Rutin and Quercetin. I assume you all have been put on blood thinners? I was having cerebellum strokes because I have a hole in my heart and the ectasia was blasting clots through the hole into my head. So the stoke issue in my opinion is the most important.

REPLY
Viki | @visnja | Mar 18 1:55pm
In reply to @nhectasia "I can understand your desperation because doctors know so little about this condition. I have coronary..." + (show)
@nhectasia

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 .

Jump to this post

Hello!
I am curious to hear the size of your popliteal artery aneurysm. And if you had surgery? How it was discovered? Did you have symptoms. I have one and it's hard to find any information from people who had/have it? Would be grateful to hear more. Thanks.

REPLY
nhectasia | @nhectasia | Mar 18 2:53pm

I am really sorry I don't remember the size but it was at the point where it was recommended to bypass. So I had the surgery. Knowing what I know now, and understanding that my artery ectasia has been stable for over 15 years I would not do it again. I would do surveillance to establish whether it was enlarging or not before I did surgery. I am five years past surgery and I still have neuropathy in my leg but improving. Do your own research and investigate the average lifespan of a bypass. I kept reading it was the gold standard. The way it was discovered was I that I was having many clots in my legs and I thought that was what was happening behind my knee. That was how it was found.

REPLY
View MoreView Less
Please sign in or register to post a reply.