Ascending thoracic aneurysm: What should I do and not do?

New to forum. 71 y o male, 6'4' rated obese. Two weeks ago, my regular doc sent me for echogram which showed aortic root at 4.1 and ascending aorta at 4.7. Sent then to CT which showed ascending at 4.8. Have received a message from my reg. doc that at my next visit (next week) we are going to discuss my results. Have a feeling I'll be seeing a heart doc in the near future. lol. I have a few other health issues and this news of a heart situation was completely unexpected. Have not shown any symptoms of what I would probably imagine. I had been diagnosed with degenerative joint disease for a couple of decades now, and have had both knees totally replaced about 14 years ago. Been under care of a rheumatologist for about 7 years, and currently going for chemo infusions of Rituxan to slow the deterioration timeframe down. Rituxan is notorious for hurting the autoimmune system. I don't smoke or drink. Because of my arthritis situation, my exercise regimen is minimal. With all that info on me, can anyone offer me some advice? I'm a bit concerned about where this is all going to lead me. Thanks. tdan4

Hello @tdan4

I can chime in on what I learned after an unexpected diagnosis of a 4.3cm ascending aortic dilation. It showed up as 4.5 cm on a calcium CT and the measurement was refined during a ct coronary angiogram. (Other problems showed up on the calcium CT.)

The routine standard seems to be an operation at 5cm. Body size and growth rate appear to be factors that can change the size for surgery. There are probably other factors as well. I am not a doctor.

When it's less than 5cm, it's monitored according to a prescribed schedule. The first check is in 6 months and yearly afterward if the growth rate is below some threshold. The growth rate seems to vary substantially.

I learned a lot at this link: https://www.ahajournals.org/doi/full/10.1161/CIR.0000000000001106 and from this group.

Hope this helps.

Mine was 4.2 2 years ago, and I found out the other day it is 5.0 now. They are saying I need to have surgery or it might rupture. I don’t know the day of the surgery yet, I’m really scared

I monitor mine annually. The last 2 years, when it was first found, it went from 4.0 to 4.2. I am on an annual scan schedule at this point. I have a local heart doctor monitor it and I also send my scans to a university hospital out of state where they have a specialist team that does the operations. This way I also have an established plan where to go to have the surgery if/when the time comes for it. My local heart doctor also told me to get hold of him fast if I have sudden and major chest pains because they aneurism might be tearing in which case he would send me to a hospital that is not as far because time is critical. As others have noted 5 cm seems to be the limit where surgery is considered.

I live in Cleveland and I going to have the surgery at the Cleveland clinic, so that makes me feel a lot better, they say I might have to be on blood thinners. I’m scared about that too.

In reply to Mikeyingst. The Cleveland Clinic is one of the leaders in managing the aorta. You are in very good hands! This Mayo blog has some great success stories of individuals just like you... facing surgery and post surgery. Its ok to be scared, but information is a great ally.... little and big nuggets of good information can help alleviate fear. So check the credible websites. Cleveland puts out excellent patient friendly information, plus a mailing list with more specific information sent to your email. Good luck in your journey! I hope this was helpful.

I don’t have a Cleveland or Mayo Clinic near me. We do have a trauma hospital that accepts emergency surgery patients for immediate surgery if needed. What do you do when a hospital doesn’t send me home but transfers me to a trauma hospital for emergency surgery because of a torn aortic aneurysm in my abdomen.

A few years ago it wasn’t torn, measured around 3.5 cm. And I had no pain. The cardiovascular surgeon acknowledged it and told me that I will have to return to the trauma hospital for surgery but because it presently is not bleeding
( I’m on blood thinners too due to my mechanical aortic valve replacement surgery in 2012). So I get discharged with strict “instructions “ that i contact my own cardiovascular surgeon.

The surgery team concluded that I was stable enough for discharge a few hours later. I made an appointment that afternoon with my own cardiovascular doctor.

He was annoyed with me for forcing him to see me asap! He says that “all hospitals say that “ so even two cardiovascular surgeons seen it and his aid does an echocardiogram and my surgeon said “I didn’t see anything “ Why has he been monitoring it for two years and now saying he didn’t see anything?

He rushed, spoke over me, and laughed it off! As he’s running out of the exam room I asked him if it could burst and he said “yes, it could but we have ways of dealing with that.”

It’s usually quick and fatal without immediate action. I could die on the sidewalk!
He says “see you next year “. For what? If he’s saying he didn’t see it why should I go back? I need a new cardiovascular doctor. I got one but have to wait a couple of months before he can see me. So that’s where I stand. He rushed out of the exam room and disappeared. I had to make a 12 month appointment with the grouchy secretary.

Dilation of proximal asc aorta showed up on my last echo, Nov 2023. . Asc Aorta 3.9 cm . It was 3.5 cm in Feb 2021. Now they want a CT. Lot of ionizing radiation plus the risk of kidney issues from contrast. I have read there can be a lot of discrepancies between radiologists on reading echos. Some measure wall to wall others outside wall to inner wall and Cts with contrast only measure inside leume inside wall to inside wall. One wall is some 2-3 mm thickness . So there can be big variation. The risk is just 4% a yr until it reaches some 4.8-5.5 cm and then it becomes some 7% a yr until about 5.5 to 6 cm. The radiation risk is perhaps more harmful. Depending on who reads the echo and if leading edge or outside wall is used there can be a difference of 4-5 mm from my reading on it..

See if you can get a gene study. Any other family members have aneurysm issues? My study showed LOX gene defect, also daughter, and my mother passed with aortic aneurysm at age 67, 23yrs ago, so we didn't know she had it, nor what the size was. Mine is 4.3cm and CT every 6 mths due to gene discovery and middle layer of arteries lacking elasticity and collagen. So surgery at 4.5cm they say. Anyone else have LOX defect? Also brain aneurysm and others.

Hi GratefulEveryDay! This LOX defect is very very interesting. My brother and I both have ascending aneurysms. He just got his genetic study (no results yet), and my study happens next month. I have no cardiovascular risk factors, but do have weird vascular spasm events. I see my cardiologist in two weeks to get the aorta measured again, and all the arteries looked at. Is there a good source for info on this LOX? I am looking on the National library of medicine site at this point. Thank you for sharing this!!! Very relevant!