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Treatment of Giant Coronary Ectasia?
2019 angiogram and told to keep exercising (40% LAD CAD). Two weeks later NSTEMI with thrombotic occlusion of minor branch. Told I have ecstasia with sluggish flow and placed on medication (Isosorbide, Xarelto, Brilinta, Carvedilol, rosuvastatin, losartan).
Repeat angiogram in 2025. Occlusion is 70% but ectasia is 8mm exceeding largest available stent and largest ectasia is 15.5 mm (described as exceptionally large giant ectasia). My VA treatment team seems uninterested in anything other than medication. All have admitted that they have (a) never seen a giant ectasia and (b) never treated one and (c) read what little they could find but never spoke to anyone who has published or treated giant ectasia.
I would love to connect with others and believe that even though we are 0.002% of the angiogram population, we must share our stories and treatments to allow medicine to learn and evolve.
Can anyone help me with resources or just connect as fellow patients?
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@uscshawk,
I'd like to invite @nhectasia, @visnja, and @mwk092680 who you posted to in the Coronary Arter Ectasia discussion.
While they may not have been diagnosed with the more rare Giant Coronary Artery Ectasia variety, they may still have some general experiences to share with how they managed both physically, but also the mental aspects of being diagnosed with a rare heart and blood health condition.
@uscshawk - you mentioned many of your providers have not only not seen this conditions, but have not heard much about it. Are you able to work with your current providers to get a referral to a more specialized medical facility that may have more experience with this rare condition? How are you currently feeling physically and managing the stress of uncertainty around your condition?
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2 ReactionsI have repeteadly been told that the attending interventionist has been “trained” on it and therefore a referral to a specialist won’t happen. I confirmed that “trained” meant some reading and they have never seen or treated a giant ectasia.
To answer as to how am I managing, I have a cardiac alert service dog and live every day with never ending anxiety. I have chest pain pretty much every day and take nitroglycerin when it feels strong. Each episode brings some panic and I loathe living with this.
I went from setting Guinness world records to being sedentary. That’s a huge change and I’m surviving but not living.