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.
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.
After the surgery they told my family it was dissecting.
