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Worried about Coarctation of the Aorta...

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Posted 3/16/2013 10:13 PM (GMT 0)
First let me ask if there is anyone else here with Coarctation of the Aorta that was not diagnosed at birth, but rather was diagnosed later in life. What were your experiences like with this heart defect. I was told by a Cardiologist that I might have Coarctation of the Aorta, but that a CT Angiogram would be necessary to tell for sure. I am now waiting for the results of that CT Angiogram. I was also told that Cardiologists normally leave Coarc of the Aorta alone in older patients, unless they are symptomatic. I am most certainly symptomatic. I'm a little surprised that I could even have Coarc of the Aorta given my age and lack of diagnosis at birth. As far as I know the only real fix for Coarc of the Aorta is open heart surgery. Can anyone help me understand all this?
Posted 3/17/2013 4:01 PM (GMT 0)
In pediatrics, we also do stenting when possible for coarctation of the aorta. I'd ask about that.

http://www.choa.org/child-health-glossary/c/co/coarctation-of-the-aorta

Also, as a fellow adult with congenital heart disease (I have/had bicuspid aortic valve disease), it's a really, really good idea to find an adult congenital heart disease clinic. (http://www.emoryhealthcare.org/congenital-heart/index.html)

This area of cardiac services is becoming more popular as more and more kids are living longer with heart defects. Basically, you work with a pediatric cardiologist and an adult cardiologist. The peds cardio will better understand the anatomy of your heart, as will a pediatric cardiothoracic surgeon.

I had open heart surgery last year to replace my aortic valve.
Posted 3/17/2013 4:25 PM (GMT 0)
I'm so sorry to hear that you had to have open heart surgery to correct your Bicupid Aortic Valve. I hope you recover quickly. I actually have a Bicuspid Aortic valve as well and that is part of the reason the Cardiologist thought it might be coarctation of the aorta. I will definitely ask about stenting should a procedure be necessary. I will keep everyone posted on what happens.
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