How often do you get scans when there are no significant changes?

I agree totally. Back in June if 2024, I read about my aneurysm in my portal . No one called me, not my oncologist nor any other doctor. I had to reach out. My cardiologist simply responded, no need to worry rescan in one year. I had to monitor my own BP and fight to get an increase in my med from 50 to 100 mg to better manage my BP. I did see a thoracic surgeon on my own who ordered my CT scan, but now it is obvious I have to be more aggressive in managing this process.

Again, grateful for all the comments and insight.

Hi All
I was diagnosed around 5 years ago with an aortic aneurysm.
It has been stable at 4.1
It increased this year to 4.2
I don’t think there is anything to do but monitor it with the CT.
I am not acutely concerned but I worry what life will be in the next 10 years when I turn 75 yo
Not fun.
This prompted me to join.
Wishing you all good things.

Brenda123

My advice (to myself and to others) is, if you're feeling anxious, be assertive until you get all the information you can and hopefully some encouragement. Don't just dwell in uncertainty and leave everything to your doctors. This is routine for them, not for us.

I agree 100%. Without getting into details, if i followed only the advice of my local cardiologist i would not be around now. Finding an experienced thoracic specialist who does this for a living at a large hospital with resources (in case you need to have the operation) is key from what I personally found out.

One more point from my experience is that depending who does the readings of the same scan, the results vary. My thoracic specialist does his own readings of the scan and does not use the ones done by the radiologist.

I concur 1,000%. I watched a medical training conference session at the Cleveland Clinic with several hundred doctors and nurses in the audience. Almost none of them could identify what a dissection looked like on a CT SCAN that the speaker/thoracic surgeon put up on the screen. That ought to terrify anyone who is taking advice from a cardiologist or general practitioner regarding aortic dissection potentials. Unless that doctor has performed aortic repair surgeries, their opinion is as good as mine. Don’t take the chance. Get a referral to a thoracic surgeon.

This is great advice and I'm going to take it.

At the ER a doctor did a bedside US and immediately spotted the dissection. And the 6.5cm aneurysm.
There are no surgeons or cardiologists in the ER at 1 am.

Hi Brenda,

From what I've read .1 is not considered "growth" and could just be slight differences in where measurements are taken, but best to get your team's opinion on that. Its really good that you're monitored and that you have been stable. In many cases these things stay pretty stable or grow very very slowly. At 65 years old and considering yours is on the smaller side, with appropriate management of risk factors you can very likely never need treatment! Wishing you good health!

Your advice is why I am looking into joining a study for the new GORE ASG stent placed endovascularly.

The Aortic Disease Center at Brigham and Women's in Boston placed me with a cardiovascular specialist who isn't a thoracic surgeon, nor is he a member of the ADC team. He doesn't even have aortic aneurysm listed on his clinical interests. I have been with them for over 3 years, and I have never seen a thoracic surgeon for consult.

My aneurysm is at 5 cm currently.

Well, at least, as far as I know. Imaging results thus far:
5/10/21 Echo - 4.7 cm here and on tests with previous providers
10/22/21 MRI - 4.9 cm
12/5/22 MRI Angio - 5.0 cm
1/20/23 MRI Cardiac Non-Stress (not angio) - 5.1 cm with a 3.7 cm dilated pulmonary artery. Should be 2.9-ish. 4 cm would be aneurysm for a woman. No one is concerned. This was done because it looked like I might have left to right shunting. I didn't.
12/11/23 MRI Angio - 5.0 cm

We skipped 2024 entirely. I don't get scanned again until this August. I think my doctor is unconcerned because it's been stable since 10/22/21. I think 5 cm makes it a concern regardless.

I just think my care has been kind of haphazard. No surgical consult. No scan for over a year and a half. I have all kinds of weird labs indicating some sort of autoimmune/autoinflammatory condition, not to mention the symptoms, the dry eye, the glaucoma/visual field defects, the skin condition, the hearing loss, my genetic results... I'm 55!!! And it just really goes on and on. I've started taking more regular pictures to document what is happening. The two top contenders absolutely intersect with vasculitis that might result in an aortic aneurysm. Can't get a BWH rheumatologist to take it seriously.

So I am going to take those two things elsewhere. Well, everything elsewhere, really. It's very frustrating and scary.

Your concerns about the care you’re receiving are entirely valid, and there are several critical steps you should take to advocate for yourself more effectively.

1. Find a Thoracic Surgeon Immediately
A 5 cm aneurysm, particularly in the ascending aorta, warrants a consult with a thoracic surgeon specializing in aortic disease. This is non-negotiable. Thoracic surgeons, not cardiovascular specialists or general cardiologists, are the experts in assessing surgical thresholds and managing aneurysms. It’s surprising and concerning that, despite being with a renowned institution, you haven’t had a surgical consult in over three years. You need to take this step now, even if it means going outside your current care team.

2. Demand Regular Imaging
With an aneurysm of this size, yearly imaging is insufficient, especially considering the slight progression documented over time. Guidelines often recommend imaging every six months for aneurysms of this size to monitor for subtle changes. Advocate for more frequent scans, or find a care team willing to provide this. I get imaging CT w/ Contrast every single November. I meet with my surgeon to review afterwards (USEFUL) as well as a cardiologist (not really useful).

3. Address Autoimmune and Genetic Factors Head-On
The overlap between your autoimmune markers, symptoms, and aortic disease cannot be ignored. Vasculitis or other inflammatory conditions could exacerbate the aneurysm. If your current rheumatology team is dismissive, it’s time to consult a new one—preferably someone with experience in connective tissue disorders like Ehlers-Danlos syndrome or vasculitis-related aortic disease. This is critical for a comprehensive understanding of your case.

4. Take Charge of Your Care Coordination
Your frustration with the “haphazard” nature of your care is understandable. It’s time to seek a multidisciplinary center where thoracic surgeons, rheumatologists, and cardiologists work together to manage complex cases like yours. Centers like the Cleveland Clinic, Mayo Clinic, UCSD La Jolla, University of Minnesota, or Stanford are known for their expertise in aortic disease and multidisciplinary approaches.

5. Don’t Wait for Someone Else to Be Concerned
At 55, with an aneurysm of 5 cm, your condition should be treated with urgency. Even if your imaging shows stability, size isn’t the only factor; family history, symptoms, and overall risk profile matter. Trust your instincts. If something feels off, you’re likely correct. I'm 60 now. I was 50 when I dissected. There is a super good chance you will not survive a dissection. I barely did.

6. Document and Advocate Relentlessly
Your methodical documentation is excellent—keep it up. Continue to take notes, ask direct questions, and don’t hesitate to push back if a doctor dismisses your concerns. Your persistence could save your life.

In Summary:
Find a thoracic surgeon right now, insist on imaging every six months, and explore a multidisciplinary team at a specialized center. If your current institution won’t provide this level of care, you’re absolutely right to take your case elsewhere. Your health is too important to settle for anything less. Peace.