@jbell22 thank you for answering! I am so sorry to hear about all of your issues first of all. I have known since childhood I had a bicuspid aortic valve, in the past 6 mos. I have had a spike in my diastolic pressures, my cardiologist started me on meds but my echo really didn’t look that bad so he just wanted to make sure there was nothing else causing the pressure other than the stenosis from the valve- so I had a cardiac MRI. I live in Pensacola, which is one of the smaller cities in Florida, my cardiologist and the surgeons here saw the scan and never seen this before, so really they couldn’t or wouldn’t speculate treatment or even really confirm diagnosis yet, in fact I have heard many different measurements of my KD from them so I am not even sure how big it is! Our hospital here has a affiliation with Mayo, so we reached out immediately. It’s only been a month since we did that so we are still working with coordinators to schedule a visit, I have found it’s not quick process. My husband is a physician, so we have tried to find some answers through his colleagues as well, but honestly I have not heard really anything from any physician other than I need to go to Mayo. My MRI result reads left aortic arch with right aberrant subclavian with KD of 3.5cm, but like I said the docs here aren’t agreeing in measurements, most have never read a scan with this before either. I have no symptoms- so I feel very fortunate. It sounds like your issue is very complicated and painful. I will just be glad to sit down with a dr who can confidently tell me what is going on and answer my questions- the unknowns are starting to cause a little anxiety. I am really apprehensive surgery. Did you have all of your procedures and surgeries at Mayo? How has your experiences there been? The coordinator has been working for over a month and I still do not have an appointment, but I also feel like I am not an emergent case so I am trying to be patient . Thank you for discussing this with me!!!