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?’?
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
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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.
Liked by Teresa, Volunteer Mentor
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.
Liked by Teresa, Volunteer Mentor, degarden_girl
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.
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 am 54 yrs old. Diagnosed with thoracic aneurysm. In 8 mos it grew from 4.3 to 4.8. I am scared to death. Anyone out there had the surgery. I dont know which is worse, the bomb in my chest or the stroke i might have diring surgery!
I understand your fear. My dr. said it would be open heart surgery for me.
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