Thoracic aortic aneurysm: Anyone had surgery?

You are totally welcome. I'm so thankful that I found this site. It is nice to know that you aren't alone. I will admit though, that the thought of having to have this surgery scares me. I just pray that it doesn't come to that for myself, my son and you! Meanwhile, keep on keeping on and enjoy life and those kiddos of yours.

Yes here I’m scared now , for the future surgery or not. Hard to live scared , telling my self all will be ok not knowing has sent me into a depression and therapy. On top I keep thinking that it’s possibly self inflicted cause everything I thought was harmless palpitations. My kiddos are my angels that I love so much and need to be here with as you do your son. My girls are 3 and 5. My aneurysm was 4.3 on last months ct down from 4.6 in June somehow. Confused and living on a prayer - nightmare that never ends - our minds have to over power cause it seems we don’t have a choice.

If it helps any to diminish a little of your fears, I will tell you that in 2016 I was 78 years old and had the surgery for repair of aortic aneurysm. My surgery was done at Mayo in Rochester and I can honestly say it was not that difficult of a recovery. It was the only major surgery I've had in my long life. I cannot praise enough my surgeon, Dr. Pochettino and his staff, each and every one of them were the best. I went into the surgery room with complete confidence that all would be positive and it was. It is best to have complete trust in your surgeon as I believe that helps so much for a quick recovery. Hope this info is helpful to you.

Thank you it does. I’m with kaiser now switching to blue so I can choose. I’m in LA so have cedars and UCLA and have also reached out to mayo of course question looms over what technology will be available when I need it whenever I need it if I do.

I understand your fear. My dr. said it would be open heart surgery for me.

I was going to wait until it is around 5cm and then go to Mayos. Should I start there sooner?

@Drew944 If you had an echo for one of the measurements you list and the CT for the other, it is possible the size of the aneurysm hasn't changed and it is actually correctly measured at the smaller size. One test measures straight across like a ziti is cut and the other measures on the bias, like how a penne pasta is cut on the angle. So your aneurysm might have been the 4.3 measurement all along and it is stable. Aneurysms don't get smaller as much as we wish they would. But the difference in the testing and the person reading the results can result in different numbers.
@anniejam Did your cardio indicate it would be "open heart surgery" or open chest surgery? As far as I know, the aneurysm is located either ascending from the heart or descending from the heart and during repair, the heart itself isn't surgically involved. I also have the AAA but have a leaky aortic valve as well which, if one or the other needs repair will result in both being repaired at the same time and I guess that would qualify as "open heart surgery".

When I was first diagnosed I have to say that it was the only thing I could think about for about a year. But the initial horror of the diagnosis has faded and it has been 10 years and no symptoms so my advice is don't let this diagnosis steal your enjoyment of life. Follow your cardio's orders and get regular testing to monitor the size and if it is growing.

@degarden_girl

@degarden_girl thank you , I do wish it would go away , how dangerous is it at this size and how long can you live with it before it needs repair and have you heard about such a good repair rate too? I want to live long - young and active I am in my 1st year - 6 months in and constantly thinking about it. Thinking what is my future, hoping not to be effected by it for my self and family. I keep looking at these wonderful replies as they keep me going. I keep wondering how this happened and if related to excedrin or blood flow supplements, vitamins etc that would cause palpitations the next day then would stop them etc - they told me my aortic valve leaks too - since not taking anything now feel fine no palpitations, would not have taken my self in without those palpitations from any random supplements including fish oil seems anything - did it cause valve leak and blood flow backwards causing aneurysm, can’t find correlation to what I took to this on dr google or cardiologist. Since I was 8 had a murmur told for years prolapse mitro but later not then valve leak then not abnormal- so a history of back and forth now this scary thing , confused and frightened and hopeful I can make it to a real old age , sorry for a long message but we are all we have to talk about this.

And could it remain stable not dangerous forever if healthy and feeling good with out symptoms?