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Thanks to everyone for sharing their experience. It's very helpful!
@wayne3382 - Mine was found on a CAC test. The diagnosis was a year ago but it seems to be growing. I'm on a 6 month check schedule now.
My PA ordered the CAC and she referred me to a cardiovascular surgeon at a regional center a couple of hours away. That center covers a large geographic area, but the area it is not population dense. They have a good rating in more common/routine cardiac surgeries, but not this kind of problem. You're right, though. I guess when the time comes, I can just tell him that I want to go to a center that does a higher volume and hopefully he will help me??
Replies to "Thanks to everyone for sharing their experience. It's very helpful! @wayne3382 - Mine was found on..."
I would have him recommend a cardiologist and get set up with them. They will manage your situation and they are more specialized and usually more connected.
As far as that hospital goes, they may not even take you. Can't get more major than aortic aneurism and you'll need a thoracic surgeon that's well respected.
If/when you need the surgery you'll be able to decide then. Best wishes. W
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Hi Bitsygirl. This is no fun- I’m a newly Diagnosed 4.4 ascending. Ugh!!!!!! I’ve no expertise at all but my feeling is that if this thing ever does a Mt Vesuvius 🌋 odds of survival are extremely remote / low thru a lack of time and accessibility etc etc. Sounds morbid 😓 but I’m being realistic and aware of the worst case scenario. Therefore prior to the situation becoming worse (for your peace of mind) it would be ideal to have done all things possible to line up the best surgeon / hospital who has / have done very many repair ops of this nature. If possible I personally would be loath to solely rely on faith and hoping a last minute optimal solution will materialise. That sounds too chancy for me.
very best of luck and love to you during this trying life episode ☺️