Newly diagnosed and/or living with ascending aortic aneurysm…anxiety

Mine is an ascending aortic aneurysm as well. So if it goes, I'm pretty sure I do, too.

The way it's going, I'll likely have the surgery in 2 to 3 years. Though I guess some organization changed their guideline to considering surgery at 5 cm. I'm already there.

But no doctor seems all that concerned, so I'm trying to go with their energy. I don't want more pain, scars, recovery, potential infections, reactions to meds, etc.

I know I'll have to give in eventually. Maybe December when I have my next scan.

Thank you everyone for your thoughtfulness. I had no idea there'd be so many people in the world who've been minding their own business, folding laundry, cooking -- or in my case, lying on the floor resting after pushing a heavy mattress upstairs -- when the phone rings and it's a nurse. And the nurse says: "You need to see the doctor about your aneurysm." That happened to me two days ago, and I had absolutely no idea what the nurse was talking about. It came totally out of the blue.

The nurse refused to explain anything ("the doctor will have to do that.") And the doctor refused to give me a call. So for the past two days I've been doing what we all do these days: Googling like crazy. A lot of what I've read has scared me to death. So I'm very, very glad I found this forum. The posts are so full of wisdom and grace. It's actually helped me feel like life will be OK. I'm going to have to learn how to relax. And I'll need to stop pushing mattresses upstairs.

Hi i also was diagnosed with a 5.0cm aortic root aneurism by accident a physical they also said they will watch it every 6 months but most stuff on google say surgery at 5.0 so I’m also scared
Did u have surgery yet?

No. My December scan showed me holding steady at 5 cm. My surgeon is kind of old-school. He still goes by the 5.5 cm. It may be in part that my aortic aneurysm genetic panel came back without connective tissue disorder variants they commonly look for. I also quit smoking years ago and am female and 54 years old. I think he thinks that I'm an unlikely candidate for dissection or rupture.

I hope he's right. I would prefer to wait until the FDA approves new stent technology for this area of the aorta. They are close. The procedure has been done for years on high risk patients who would not survive open-heart surgery with the bypass. Results have not been great, but these have been the highest risk patients.

I'm trying to get my autoimmune disease officially diagnosed. It looks like Behcet's. I have the dilated pulmonary artery going on, too. Rheumatology (at Brigham & Women's and Beth Israel) has been a nightmare to deal with, though.

I am a 64 YO Female good physical condition exercise everyday nothing crazy light weights and cardio. My Ascending Aorta aneurysm was found on a CT calcium score back in Dec 2023 so it was found "incidentally" they remarked it as aneurysmal and measuring up to 4.1 cm Just had my follow-up CT on Saturday 6/8/24 the measurement is actually 4.2 cm so there is my baseline there were not other findings everything else was w/in normal range. Root, Arch and descending aortas all normal range. The overall findings on the report was Mild Dilation of the Ascending Aorta. I am seeing my Cardiologist today 6/14/24 to review the findings I suspect he'll just tell me to go back in 6 months check it again. I don't have any underlying issues like Marfan or Bicuspid Valve. I do have HPB but it's well controlled. I did have a bad fall last year and I fell on something so I am wondering if this was a result I will have to ask today. I also read that the older you are the wider your Ascending Aorta is. If the calculation I found was 31 + 0.16 * your age which would put me at 4.1 cm naturally

Where did you find that calculation? I've never seen such and have looked all over the web.

Thanks

Don

I put in the search engine of Google ascending aorta diameter by age I got a bunch of different links and I found it in one of those links

I finally saw the cardiologist yesterday he said that I have a mild dilation it's not that big it's actually small the aortic Arch the root the descending all normal range he was comfortable enough to tell me I want to test you in a year we kind of argued over it so we agreed to 6 months with an echo in his office just to make sure that my mind is at ease the only thing that he told me to be careful of is at the gym he said don't get your pulse rate over 150 because that could be raising your BP and I just chuckled and said don't worry it'll never get that high so we'll see what happens at 6 months but I've been praying God is good he does answer prayers

Wow - I would certainly get another opinion and research research research. I’m sorry he “ blew you off.” Not very professional. Doctors need to treat not only the medical parts of us but also give us some emotional doctoring too. I wouldn’t want a doctor who isn’t also a healer.

I can fully understand your anxiety. Aortic aneurysm are life threatening situations. You should educate your as best as possible. I myself have a Aortic root aneurysm that measures at 4.5cm. It showed up on my echo in January of this year at 4.0cm. So my Dr set up a CT for March. It showed up at 4.5 on my CT. I'm not sure why such a difference between the scans. I have gotten a Cardiologist an a surgeon both since. I live in a very small community. I had a medical emergency in April. My BP was at 195/117. I made my emergency room Doctor of my aneurysm. He stopped everything he was doing. He said that our community hospital was not equipped for that kind of emergency. Gave me a shot of medication to bring my BP down sent me home. The one thing I've learned about our situation. It's either going really well or it's a life threatening situation. So educating yourself is so important. My local Cardiologist has Cardiologist from much larger communities call me. I'm his first aneurysm patient. So I'm really glad he's humble enough to do that for me. So my best advice is get a good Cardiologist. Educate yourself. Plus get yourself a medical bracelet that states your a aortic aneurysm patient. One of main reason aortic aneurysm patience die. They are misdiagnosed when they are taken to Emergency rooms. The get treated for a heart attack. John Ritter is prime example of this. So hang in there. Best wishes to you!