New with questions...

[Karen7]

Any thought to having your thyroid function tested? might be a contributing factor here... Ask your Doctor. I know that you have already identified your heart's anotomical abnormalities - but - your fatigue, swelling and throbbing might come from thyroid too...

Tom

Hi Tom, my goodness, you think like a doctor. Yes, I have had my thyroid levels checked twice since Feb (once with the more detailed analysis) also an MRA of the renal arteries, 24 hour catecholamines test, tests for all the connective tissue diseases -- all were negative.

Thanks for the post!
Karen

 

[Karen7]

Karen,

I ditto all of the above. Hindsite is golden and I have very recently been given an avalanch of it as I just had a Bentall procedure for ascending aortic aneurysm and stenotic bicuspid aortic valve 7 weeks ago. What would I have done differently? The first thing I would have done is insist on a MRI or CT with contrast to directly look at the ascending aorta. I hope this is helpful.

Hi CCRN,

You have given me a LOT to think about, thank you. I hope you are feeling better from your surgery. I have been tested for connective tissue disease and for thyroid - both normal. I will check out the bicuspid website. I am sure that whether I have surgery soon or not, I should look around for a better surgeon than the one I saw.

Thanks & nice to meet you,
Karen

 

[KimC]

Karen,

Welcome to VR.com and RUN LIKE HELL from the doctor who recommended Xanax. While my aortic disease is only 2+, I have small vessel disease which causes a "coronary flow deficit" and angina-like symptoms.

It took TWO YEARS to be diagnosed and treated properly with an ACE-inhibitor and diuretic which help keep my pressures low and arteries open.

I'm in much better shape today than I was two years ago after a very, very difficult pregnancy in which my OB and then-cardio recommended Xanax which put me in the ER with pre-term contractions. (The cardio was subsequently suspended for alcoholism after showing up in the ER intoxicated while on-call).

I'm also a small woman and wonder if the chamber "standards" are a good fit. My LV is 5.4, and the RV is technically enlarged, but the word is that it could be due to the pregnancy, small vessel disease or running, not valve disease. (I was a runner for 15+ years, not during the pregnancies, of course).

Bottom line, my cardio has me taking meds which should hopefully reverse the dilation in a year, but only time will tell.

If you're feeling symptomatic, then why not press for a trial run of a low-dose vasodilator like an ACE-inhibitor? When I started taking one, the pulsations decreased.

More importantly, I would also seek another opinion from a large tertiary center like Georgetown. Cynthia M. Tracy, MD Professor of Medicine and Chief of Cardiology is an excellent cardio there. (I used to live in suburban DC).

Seven children? I am not worthy! I am not worthy! I only have three, and lots of child care help!

All the best,

 

[Karen7]

Karen,

Welcome to VR.com and RUN LIKE HELL from the doctor who recommended Xanax. While my aortic disease is only 2+, I have small vessel disease which causes a "coronary flow deficit" and angina-like symptoms.

It took TWO YEARS to be diagnosed and treated properly with an ACE-inhibitor and diuretic which help keep my pressures low and arteries open.

I'm in much better shape today than I was two years ago after a very, very difficult pregnancy in which my OB and then-cardio recommended Xanax which put me in the ER with pre-term contractions. (The cardio was subsequently suspended for alcoholism after showing up in the ER intoxicated while on-call).

I'm also a small woman and wonder if the chamber "standards" are a good fit. My LV is 5.4, and the RV is technically enlarged, but the word is that it could be due to the pregnancy, small vessel disease or running, not valve disease. (I was a runner for 15+ years, not during the pregnancies, of course).

Bottom line, my cardio has me taking meds which should hopefully reverse the dilation in a year, but only time will tell.

If you're feeling symptomatic, then why not press for a trial run of a low-dose vasodilator like an ACE-inhibitor? When I started taking one, the pulsations decreased.

More importantly, I would also seek another opinion from a large tertiary center like Georgetown. Cynthia M. Tracy, MD Professor of Medicine and Chief of Cardiology is an excellent cardio there. (I used to live in suburban DC).

Seven children? I am not worthy! I am not worthy! I only have three, and lots of child care help!

All the best,

Hi Kim,

Thanks so much for recommending a local doctor. Many people recommend particular hospitals around here (Maryland) but no specific docs. And there's probably not any hospitals that have ALL good practioners...

The doctor that prescribed xanax is not my doctor anymore!

Great idea about the vasodilator. I will talk to my cardiologist about it the next time I see him.

Thanks for your help.

Karen