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vicks
@vicks

Posts: 4
Joined: Mar 15, 2018

Coronary artery disease/Specifically Ectasia CAE

Posted by @vicks, Mon, Mar 19 1:32pm

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

REPLY

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?

@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?

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Thanks for getting back to me….had chest pain shortly after getting back from Philippines…so doctor did usual EKG…etc…sent request to Cardiologist who did Mibi test followed by an angiogram…which pictures showed Pronounced Ectasia with 50% blockaged in 1 Artery….they basically put me on Crestor 20….aspirin 81…and plavix 75..and said it was manageable…the pictures were frightening to see and after seeing cardiologist he did not know much about it it seemed but we agreed to have CT of Aorta..which was ok ….have. Referral for A Rheumatologist but isn’t till later September which is ridiculous…need to know more like yesterday
so being being proactive and trying to find more information with a medical professional who has dealt with Ectasia…dealing w Naturalpath…and changing lifestyle of course using CardioFlex (high vit C lysine Q10 Magnesium ++) protein shake…exercise. But hard to control stress….rupture always a thought….told could have a lot to do with immune system and inflammatory disease ….still have chest pain 80% of time and manage w Tramacet 325 at night which helps…sorry a little long…but just putting it out there in hope….I’m a young 67 non smoker and had hopes of an older age….trying to keep positive…thanks Gary

Hi @vicks,

Thanks for sharing your history. While we wait for fellow Connect members to join us, I'm also tagging Mentors Martin @predictable, and Teresa @hopeful33250, who have much experience in heart-related conditions, and I'm sure they will be able to offer more insight.

Hello @vicks,

I so appreciate your reaching out to Connect with this newly diagnosed heart condition. As I had not heard of it before I checked it out on google and came up with this link, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1861081/ from the NIH. I see that this is a rare disorder and only affects a small percentage of people in the U.S. I can certainly understand your concern. Dealing with a rare disorder tends to cause more concern than something that is more common and has more treatment options.

I really applaud you for your proactive approach. I appreciate your comment, "…so being being proactive and trying to find more information with a medical professional who has dealt with Ectasia." Being proactive is very important along with "trying to keep positive."

I noticed that you said that you have an appointment scheduled with a Rheumatologist. Is that because this disorder is an autoimmune problem? Just wondering.

I look forward to hearing from you again.

Teresa

@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?

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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

@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

His reference is directed at disease which could be RA…and possible inflammation….says he is familiar with it but yes have my doubts…might seek out a back up Cardiologist..thanks

@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

Keep me posted as to what Dr says I think your wise to have another opinion from another Cardiologist

@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

@vicks

Thanks for the added information – yes second opinions are always a good idea – especially if you go to a large research facility like Mayo or a university medical school.

I look forward to hearing from you again regarding your success in dealing with this disorder.

Teresa

@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

Hi, Gary @vicks. I can help best by endorsing what Teresa suggested yesterday and emphasizing that CAE's secondary — and most puzzling cause — can be inflammation. If your cardiologist suspects that, a referral to a rheumatologist makes sense. I hope you can take two good steps forward: 1) get a second opinion from another cardiologist, this one with a strong reference for experience with CAE, and 2) track down an experienced rheumatologist as soon as you can and have your ectasia checked for inflammation. With them on your medical team, I am confident you'll develop the means to manage your ectasia without seriously discomforting symptoms. My other piece of advice is to develop your own confidence that your problem is not as threatening as it might seem right now, and if your doctors don't prescribe unusual treatments and lifestyle changes, trust them until you get concrete evidence that you need more help than they can provide. Keep us advised so we can back you up as you move forward. Martin

@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

Hi Vicks another suggestion if it is inflammation drink ginger-turmeric te s both great for inflammation.Get it at Trader Joe,s read more about inflammation if this is the cause

@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.

@dpframing

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.

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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

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