I'm "Only" 39, It's "Only" 4.5cm

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Hi MrP:

Thanks for your perspective. Sounds like my plan to get a real image and condition of the AV is the right start. I'll then send everything to Stanford and get their input.

The pain thing is really confusing. I have no shortness of breath or correspondence to exercise as would be present in valve failure. It's a sharp, "grinding" pain like someone stabbing me between the left scapula and spine and out through the chest, and twisting the knife. Having said that, it's never severe, around 2/10 at worst. It sounds aortic but I can make it worse by tilting my head back and to the left (either that or I have an underlying muscle issue in the exact same spot!). It doesn't seem to match up to times of the day when my BP is higher. Furthermore I've had the pain for 8 months; that's why I stopped in for the scan last month, but the aorta has apparently been stable at 4.5 cm for 3 years. So they're not reporting any growth which could be causing the pain. It does feel like it's worse and more often over the past month, but of course that's since I found out about the dilation so of course I'm hyper-aware.

Dunno. I would feel a lot better about my cardiologists lack of concern if I didn't have this pain or could be convinced it wasn't aortic in nature.

I definitely would like to be comfortable with a decision to delay any surgery until I'm better able to absorb the financial, occupational and psychological burdens during recovery.

As for lifting, I have good upper body strength, been lifting patients for years. I would expect that the stronger one's muscles are, the more weight that can be lifted without a significant rise in aortic BP. But I'll have to confirm that.
 
Hi Star, thanks for sharing.

They couldn't tell your aneurysm was dissecting when they found it at first? Or it started to dissect somewhere between detection and surgery?

I suspect that they saw something in pre-op testing the week of the surgery, they moved my surgery up a day....I did not ask why..I did not want to ...I sort of knew...I sewed up all loose ends in my life and went into surgery peacfully....it was out of my hands and in Gods....:) After the surgery they told my family it was dissecting.
 
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Thanks MrP. I guess I'll have to find out if my pain is being caused by my aorta.

*sigh*
 
I would request that your records be sent to Dr. Miller if you haven't already. That's what I did. In my case, he asked to see me for tests and a visit. I have BAV and a 4.4cm aorta. I need the BAV replaced soon, and Dr. Miller prefers to fix the aorta in the same operation and even has a paper he wrote on the subject. So, that's happening to me in 2 days. This is not directly relevant to you, but just points out that Dr. Miller has a very reasoned and tailored approach to enlarged aortas.
 
OK, that's what I did. Especially since I found out my cardiologist hadn't even set my appointment yet. Dr. Miller's NP is going to receive all my imaging and records, and set me up with a 4D "gated CT angiogram" which will image the aorta and show a perfect view of the valve. I've talked with them via email and they think I'm safe for now, that my pain isn't aortic, but they will review everything, schedule these tests, and set me up with their best cardiologist for a full workup. This will all happen some time in November, so hopefully I'll have some answers soon that I can really rely on. Stay tuned!
 
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