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?’?
Welcome to Connect. I moved your message to this discussion to introduce you to other Connect members who are talking about thoracic aneurysm. Interestingly @aldona like you felt it was like having a time bomb inside her. @jbsb93 opted to have surgery while @clevelandme decided against it.
I’m also tagging Bruce (@ch246cf10) to bring him into the conversation.
There are many factors to consider when making such an important decision. I encourage you to continue to share your thoughts and ask questions here with people who have “been there”. Sometimes it just helps to write it down.
Connect Community Director
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Welcome to Connect, @loracnh,
I'd like to introduce you to Mentor @hopeful33250, as I'm confident that she may have more insight for you. I'd also like to invite @jimmorris900 @jpmerk @thankful @jend @lynnkay1956 @elsinann to join in, and provide some guidance and thoughts.
@loracnh, have you asked your doctor if there could be some variation in the CT, which could make the aneurysm appear smaller? Are you taking any medication to manage the aneurysm?
Liked by Teresa, Volunteer Mentor
Hello @loracnh and thank you for your post.
Your question about the decreasing thoracic aortic aneurysm is very interesting. While I do not personally have a DX of thoracic aortic aneurysm I can certainly understand how frustrating it is not to have clear cut answers as to what is going on.
If I may ask, do you have any other heart problems, such as heart valve disorders or rapid heartbeat, etc.?
Here at Mayo Connect we try to encourage our Members to be proactive regarding their health needs and questions and to seek answers. Have you sought a second opinion about this problem? If you are near a Mayo facility (Minnesota, Florida or Arizona) or near a large university medical school that might be a good place to seek another opinion.
I look forward to hearing from you again.
Liked by Kanaaz Pereira, Connect Moderator
I read where they sometimes never rupture. Mine is 6cm and holding. Keeping Bp down and hoping. Opting out of surgery because I am 83 and have copd.
Welcome to Connect, @ernestine, and thanks so much for sharing. Since you mentioned you have COPD, I thought you might be interested in scrolling through discussions in the Lung Health group, https://connect.mayoclinic.org/group/lung-conditions/ on Connect.
@ernestine, may I ask if your doctor is comfortable with your decision of not having any surgery? How are you managing the aneurysm? We sincerely look forward to getting to know you.
Hello @ernestine and let me add my welcome to you for posting on Connect!
I do encourage you to read through some of the posts on this page. As you can see, many people have had great surgery experiences, especially at Mayo. Have you addressed your concerns about COPD and the risks of surgery with your doctor? If not, that might be a good idea. He might be able to reassure you about your concerns.
I have a family member who was diagnosed with an abdominal aortic aneurysm about 20 years ago. She decided because of her age (and most importantly her fear of surgery and doctors) not to address the problem surgically. While she was OK, with this decision, the rest of the family had a hard time with it. At age 92, she still has the aneurysm . Any time she has to have a CT or ultrasound of the abdomen doctors always warn her about the risks of not doing something, however she probably will continue on as always. This is a very individualized decision and requires courage to either address the problem or to let it run its course.
I wish you well and I look forward to hearing from you again.
Just joined Mayo Connect and saw your post today. Wondered if you got the surgery, how long ago, and where. If so, are you doing well now. I was looking into the three places you mentioned. I wish there was a great hospital for this surgery near our home but there is not. Concerned about aftercare if it is needed to remedy an unforeseen problem. Every doc here in Sacto wants to push their facilities regardless of their ratings and that I will not do unless it is an emergency. This surgery is too daunting for just anyone to perform. I sincerely hope all is well with you on Palm Desert. Deby
I was diagnosed 4 months ago with an aneurysm on my ascending aorta, 4.3 cm. I’m 66 years old. My father died from a dissected (burst) aortic aneurysm when he was 60. The recommendations seem to vary as far as blood pressure control to prevent dissection. Some say keep the systolic pressure below 140 mm Hg. Others say to get it below 120 mm Hg. Who’s right?
My cardiologist at Mayo wants mine below 120/80. My aneurysm is 4.1.
Hi , I am 47 5.11 and recently advised I am mild-moderate TAA 4.6 and Aortic Valve insufficiency. I have been told by 2 Cardiologist that they are monitoring initially 6 months and annually and nothing further is needed at this time other than no heavy weights and stay fit and If it ever needs to be repaired, they can repair with a good success rate in the 90 %'s. Its too small to do anything now. I feel mostly fine other than scared. I feel young and have my young family. How do you cope? I am working on it but need support from time to time. Thank you
Hello @akovacs944 and welcome to Connect. You may notice that I merged your discussion with an existing discussion on thoracic aortic aneurysms. I did this so your post would be seen by all of the members already discussing TAA. If you are replying by email, I suggest clicking on VIEW & REPLY so you will be brought to the new location of your discussion. You also may notice that some of the posts are from awhile back, but there are also many recent posts as you read through.
It gets better with time. The diagnosis is a lot to wrap your head around. Information helps. Reading other peoples stories helps. Validation helps. Yes this is big, but I am strong and can deal with it. Something that helped me a lot was having my cardiologist tell me that I can ask her any question at any time, through the patient portal, no matter if I think it is stupid or not. (extreme roller coasters) Some I am sure have been stupid but they calmed my mind. It made me feel less anxious. Mayo has been awesome about this.
Thank you so much – its the hardest thing to deal with. I keep looking for answers and wanting to do something more about it and have to keep telling my self I will be ok and it is being monitored and will be fixed if needed. Back in 2 months then 4 months later. Never went to the Dr so much. Never had this before. I have felt symptoms for 40 years on and off – was always told it was nothing, now this.
Thank you for your kind words of advice Lynn. May I ask the name of your cardiologist at Mayo?
Dr. Bonnichen is my cardiologist and Dr Pochettino is my surgeon. Dr Bonnichen gets referrals from Dr Pochettino for people that are on our journey. A kind of "hand holder" for when you start getting worried or have a question. After the diagnosis you are kind of left hanging since the surgeon isn't there until needed. She keeps an eye on my blood pressure and schedules me for my screenings to check for growth. She is awesome to have on my side. She is also a very kind person.
Thank you Lynn for your prompt reply. You are so very kind! These are the two docs that I have chosen through my research, but have not had an appointment yet. I have sent records to Dr. Pochettino and will contact Dr. Bonnichen soon. My current echo by the doc here reads 4.6. I am waiting to visit Mayo next spring for my CT unless the next echo shows growth sooner. This is a very difficult diagnosis to live with.
Have a pleasant day.
I just found out I have a AAA. It is 4.0 right now. It is very scary . I will be flowing you to see how you are doing. Good luck at your appointment
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