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.

relax2 | @relax2 | May 17 3:17pm

Just a suggestion … find a good university hospital They have the best doctors and surgeons and are up to date with all the latest medicines and procedures Be persistent, do your research and get an appointment even if you have to wait.

REPLY
nhectasia | @nhectasia | May 16 9:34am

There wasn't alot of pain, just uncomfortable. I had many clots before and that is what it felt like.

REPLY
mwk092680 | @mwk092680 | May 15 5:46pm
In reply to @nhectasia "I am really sorry I don't remember the size but it was at the point where..." + (show)
@nhectasia

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.

Jump to this post

What was the feeling you were having behind your knee? Was it painful?

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
1 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 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
nhectasia | @nhectasia | Mar 2 9:30am

Gary see my posts. Your condition is genetic but you can definite do things to mitigate the condition. I am not a doctor. If you have 5 vessel CAE you may have the condition elsewhere such in the basilar artery of in the form of a popliteal aneurysm.

REPLY
nhectasia | @nhectasia | Mar 2 9:25am
In reply to @lioness "I don't understand why he is sending you to rheumatologist?this should be handled by a cardiologist..." + (show)
@lioness

I don't understand why he is sending you to rheumatologist?this should be handled by a cardiologist I would take all your test results to your PCP

Jump to this post

They are looking for underlying cause such as vasculitis or some other autoimmune cause for your condition.

REPLY
nhectasia | @nhectasia | Mar 2 9:21am
In reply to @kanaazpereira "Welcome to Connect, @vicks. I can only imagine your concern, and I'm so glad you reached..." + (show)
@kanaazpereira

Welcome to Connect, @vicks. I can only imagine your concern, and I'm so glad you reached out to the Connect community for some answers. Since coronary artery ectasia is attributed to atherosclerosis in majority of cases, I'd like to invite @HeartPatches @jacks4 @kandjmoore1, to share their insights with you, as they've also discussed atherosclerosis.

I thought I’d introduce you to a few Connect members who've shared their experiences with Coronary Artery Disease as well; please meet @jchp @llecrup @donnac1969 @lioness @marnie10. Im confident they will join in with more information.

@vicks, how did your doctor diagnose the coronary artery ectasia (CAE)? Did you have any symptoms? What are the next steps, in terms of treatment?

Jump to this post

I am not a doctor. I have 5 coronary arteries that are ectatic. My basilar artery in my head also has ectasia. I had a popliteal aneurysm which I foolishly had repaired before I understood my condition. Good luck finding care. I have very little atheroclerosis. I am now on the blood thinner Xarelto which is imperatives because In my case I have a hole in my heart and the clots were ending up causing cerebellum strokes. My arteries have remained stable since 2010. Its important to down regulate mmp-9 and mmp-2. Taurine, arginine, rutin, vitamin d, COQ10, zinc and quercetin for starters. My blood pressure is now normal. My total cholesterol has drooped from 220 in my twenties to 130ish today. Give up alcohol and dairy products. My triglycerides dropped 35%. Good luck!

REPLY
nhectasia | @nhectasia | Aug 20, 2024
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

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.

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