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.

You need to run for the hills as fast as you can. I don't like what I'm hearing about this hospital. Keep looking until you find doctors who will listen to you and take you seriously. Your treatment as you describe it is not acceptable.