Mayo Clinic Connect
‘I was born with a hole in my heart and have had 2 surgeries. One to fix hole and the other a valve replacement. I’ve been recently told the I have a thoracic aneurysm and possibly will need more surgery.. Anyone gone th ru this before?’?
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.
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I was going to wait until it is around 5cm and then go to Mayos. Should I start there sooner?
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.
@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 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?
@Drew944 I think you are trying to find a way to blame something you did for this aneurysm but it may not be anything you did but just a genetic weakness in the aorta. In any case, don't spend time trying to find an answer to a question that doesn't need to be asked. You have an aneurysm, you can't change that and all you can do is assure your cardio is monitoring it and that you are following the cardio's direction about what you should and should not do. It is important to keep your blood pressure under control as elevated blood pressure can put pressure on that weak spot in the aorta. If you smoke, stop right now. I believe that an aneurysm can remain stable and not in need of surgical repair for years and years and years. Not sure about "forever".
The longer we can remain stable, the more likely there will be a different and less invasive repair available. And the more likely that something else will "get us" before we need a repair. Our bodies age and we won't live forever; our best bet is to follow the cardio's direction and enjoy our lives. We don't "win" by worrying.
And if down the road I do need surgical repair, I will have it done and be grateful that medical science has advanced to the point that such repair can be done with a positive outcome. And if I get really, really old and perhaps not likely to survive such a surgical procedure, there is another procedure already available for placing a stent in the aorta to add strength.
I will not let this diagnosis steal my joy in life and you shouldn't either. You have children who need you to be joyful and not consumed with (unnecessarily) worrying about this. Place your trust in your cardiologist and he will alert you if you need to do anything further.
I wish you well.
That was helpful and encouraging.
Liked by degarden_girl
Also I understand your fear which we should not minimize.
My ascending aortic aneurysm is around or in one of the 3 flaps and i thought my cardio dr. said that I would need open heart surgery due to location.
@annejam I think it would be best to discuss all these details with your cardio and maybe take a trusted friend or family member with you to take notes. I think with more details, you will feel better about the situation. It is hard to know the questions to ask when we are first told of the diagnosis. But now you have had time to think about it, it will be worth it to make another appointment to clarify everything. I think you will feel so much better once you know exactly what the issues are and what you need to do and what you can expect or not expect in the near and distant future. Write your questions down ahead of time and give a copy to your cardio and to your accompanying friend so you can assure all questions have been answered.
If your cardio is reluctant to take the time you need to get the questions answered, maybe you want to find another cardio. Any cardio worth his/her salt should be ever so willing to answer your questions and put your mind at ease.
Thank you so much , I am living healthy cycling daily and eating well , and will live hopeful and listen to dr’s and fight for my life for my family and my self even searching when needed for the best surgeons and advances. From what I have learned so far it although invasive is again 98-99%. My wife doesn’t doubt the outcome I shouldn’t either – a work in progress why it’s a journey. Best to all through this holiday seoson
After my open heart surgery for ascending thoracic aneurism I developed ocular migranes. Is it true that these migranes increase your risk of stroke x 3?
I was diagnosed 1year ago by accident. I had an MRI on my breast and the aneurysm was discovered. 4.6cm. No symptoms or problems. Recheck every 6 months. No change in activity. Just keep close watch of blood pressure
So tired of being tired. I was diagnosed with a thoracic aortic aneurysm and arterial pulmonary hypertension about the same time five years ago. I cannot do much in the way of exercise nor even simple chores. Can anyone else relate? Tips on how you get along with this condition? I have no arterial plaque and strong heart muscles so I have a real problem mentally coping with this diagnosis.
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