Thoracic aortic aneurysm: Anyone had surgery?

I am new to this group and was diagnosed with a bicuspid heart valve and a thoracic aortic aneurysm several years ago. In 2017 I had a TEE procedure that showed it measured 4.6. This year, because of the complications from the TEE they did CT angiogram which showed that the aneurysm was still at a 4.6. My cardiologist recommended I have the angiogram in another year. My question is do most of you just have the aneurysm measured yearly or every six months..I've read conflicting information on this. Thanks for your help!

@twocents Hi, There is significant radiation with a CT scan so cardios are sometimes reluctant to order them every 6 months unless there seems to be a rapid increase in size. Sometimes cardios will order echocardiograms on a 6 month schedule as there is no radiation involved. You may wish to talk to your cardio about scheduling echos just to verify the aneurysm is remaining stable. Just be aware that the two measurements will not be the same. One measures directly across the artery and the other measures on the bias so will appear larger. I can't remember which test measures larger but I think it is the echo. I only have knowledge of Ascending Aortic Aneurysms (AAA) so if you have a different condition, this information may not apply to you.

In trying to find answers to why this happened when I don’t seem to fit any of the causes - low blood pressure etc could it have been caused by blood flow and other supplements over the years that seemed to have caused palpitations the following days - fish oil, saw palmetto , excedrin , Argenine , citruline - my cardiologist’s says no but I’m at a loss of why me, but I why anyone- bad luck ? Hope we will all be ok getting it monitored and fixed if needed. Thank you

I didn't know that an aortic aneurysm could be caused by low blood pressure? Mine is most likely caused because of an bicuspid valve.

Sorry thanks I just meant I don’t have high blood pressure- on lower side so not that , have not smoked since I was a teenager etc so don’t know how mine was caused

Anybody have this happen without listed causes and anyone know why we don’t hear more about this journey ?

I have none of the normal "causes" for this, it is a mystery. It is hard to find any information that is not "doctor targeted". Even the doctors don't talk about the "journey". You are either ready for surgery or not ready. The part that we all deal with in between finding out and getting it fixed seems to be ignored as if it is not important. I don't know about the rest of you but it is important enough to be on my mind a lot. It is nice to have this connection to people that have the same thing on their mind and understand that it is a big deal.

Thank you - completely agree - I can’t stop thinking about it and not sure if I did this to my self through gnc supplements as was sensitive to palpitations the following days even though the dr’s say unlikely. Can’t find normal cause either. At 47 all I can do is hope and pray for my self and my family- have 2 babies so the journey is rough.

I understand that you are scared. I am too, but I try not to dwell on it. My internal medicine doc told me a year and a half ago, that I would have to have my aorta and valve replaced immediately. Two of the cardio docs, disagree, saying my valve is working fine, and we just need to watch the aorta to see how quickly it grows. My son, who is only 37 also has the aortic aneurysm and they are watching him yearly with an echo. We both just go on living and try not to let this define us. I follow doctors orders, not lifting over 25 lbs, exercise and eat healthy. Try not to dwell on why this is happening to you or what you did to cause this...its not your fault, sometimes is just the luck of the draw.

Thank you so much for Sharing and your comforting words. I suppose also comforting is that if a repair is needed it’s repairable with a high rate of success as I hear. Thank you again as I find my self re-reading your thoughtful words. Nice to have support from those who understand as well.