Bicuspid Valve- Dilated Aorta

[momohio]

AlanG,
I will definitely let you know of anything more I find out.Thanks!
BadMad,
Unbelievable!! Who can we put our trust in?? As you say, these are "experts."
And yet, to get NO response even!! It is really sad. It is so hard to believe that they really don't know as much as we hoped they would! I suppose we have to keep on trying and pulling for real answers. I realize that all people are different, but all the more research has to be done. They should not pretend to know, thinking that is helping us, when in fact it is hurting us.

 

[momohio]

Thanks Alan. I will definitely check it out and listen. I want to learn all that I can.

 

[Ozmercy]

I have found that there a lot of great cardiologists that are experts in Coronary Artery Disease (CAD) but are clueless in the face of cardio defects. Is your son tall and lanky? Has he been tested for Marfan? I will agree with Kate. You need to get connected at a research type hospital that deals with issues like your sons more often. I got the run around from 3 doctors and one almost killed me. I did not get answers till I went to Cedars where I met with a cardiologist that specializes in valve disorders and aneurysms. Dr. Siegel saved my life and I am forever grateful to him. Well hang in there but listen to Kate she has walked where you are going before.

Randy

 

[momohio]

Hi Randy,
My son is of average height and weight, and has not been tested for Marfan.
I will definitely heed the advice, and am going to be taking him from now on to Cleveland Clinic for evaluations and treatment.
Thanks so much for your response!