Thoracic Aortic Aneurysm 5.1cm- worried

Hello @shiju5. I'd like to invite @luckybear, @azitavahid, @berniemacc70, @bobbyknik and @larak to this discussion as they all mentioned having a TAA reach 5.1cm and may have some experiences to share with you.

@shiju5, while you wait for the results of your genetic testing, did the cardiac surgeon give you any instructions on how to proceed daily with your new diagnosis? If you are comfortable sharing, are treatment decisions going to be made once you receive the results of your testing?

Hi, all. My ascending aortic aneurysm is at 5 cm and has stayed there for a couple years now.

But, as @shiju5 mentioned, it is concerning that I do not know for sure what caused it. Will I somehow trigger further expansion without knowing?

In my case, it could have been a genetic susceptibility to ciprofloxacin. I was on a ton of it via IV for a post-surgical infection. I avoid all fluoroquinolone antibiotics now, which is bad because I'm allergic to penicillin. But cipro has a black box warning for aortic aneurysm.

But it is also looking ever more likely that I have Behçet's disease. That can also cause aneurysms.

One of the best things I did was to get my own whole genome testing and scan the raw files for known and suspected pathogenic variants. Two of my top 3 were for homozygous for Behçet's. I would never have figured that out on my own, despite my symptoms, conditions, and family history. This is the first thing I highly recommend. Whole genome, not whole exome. Exome is useless. It may not cover HLA genes which would be, where you'd find pathological variants in many autoimmune and rheumatological conditions that can cause aneurysms. So not Invitae, which just got bought by Labcorp, I believe.

When doctors do a genetic panel, they are mainly looking at connective tissue disorders. It's a very small number of genes for conditions you would likely already be aware that you had. Other than vascular Ehlers-Danlos. That one is good to check.

Did your doctor do a standard rheumatoid panel? ANA, ENAs, complement proteins, etc.? My ANA is speckled pattern and high titre (1:1280), with none of the standard ENAs positive. I have had multiple slightly elevated complement labs. And no one cares. 😂 So I'm collecting the evidence for Behçet's myself: my labs (including getting the specific speckled pattern), my positive HLA-B51 antigen lab, my dermatology records, my dental records, my opthalmology records, my genetic results, my cardiology reports, my brain MRI (microbleeds), and copious photos.

I'll likely go to Mayo in Florida and see someone familiar with Behçet's. Mass General Brigham apparently knows nothing about this condition. I've seen a couple of rheumatologists there who seem to just be assuming "hysterical female."

My doctor (a cardiologist at Mass General Brigham who is not a thoracic vascular surgeon specializing in ascending aortic aneurysms) goes by the 5.5 cm guideline for surgery. Which I am fine with. I do not know when they'll have me see an actual surgeon.

I am hoping to hold out for FDA approval of a new stent currently in phase 3 trials. It's been in use for a while, but only for high risk patients who wouldn't survive the open procedure.

I'm also using this time to drop some weight, find a doc for the Behçet's, and reduce stress in my life.

As to stress reduction, I am working with a therapist. I highly recommend it. This is a terrifying condition, but you can't do much about it. Aneurysms don't shrink. Your long-term results are basically either in the hands of a surgeon or Fate. I'm such a control freak that I'm not okay with either option. 🤣

So my therapist and I talk a lot about locus of control. Basically, the Serenity Prayer: Gods*, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

*I'm a total, bloody heathen.

When I find myself in my frequent overwhelmed, stressed out, control freak state, I step back and re-examine. Am I trying to do something I can't do? You can't make anyone care about something or do anything. You can merely make the request, then let go of the outcome. This one question usually eliminates half of my to-do list. 🤣 But it's a hard question that brings you face to face with a harder reality.

Good luck to you on your journey. Keep your eyes open. Ask questions. Research. Make your wishes and concerns known politely, then step back into a healthy coping mechanism. I recommend walking and trying to be present with it. Or playing music that uplifts you. If you are religious at all, reconnect with it. If you're not, maybe volunteer helping cute animals at a no-kill shelter, or help at your local food pantry. (Just don't lift more than your surgeon's guidelines.) Something that connects you to others in community, something bigger than yourself.

Oh, dear. What a shock this must be for you. But now you know about your condition and are young enough to handle it--with your doctors, of course. I take Coricidin too, as I have high BP. I was told to avoid alcohol and salt and control my BP. I walk everyday (mostly) and have lost some weight, which, I figure, can't hurt. It's always upsetting when you learn you have an aneurysm; I freaked out and messaged my cardiologist about a dozen times over the weekend after my diagnosis. This support group has helped me so much and now I'm much calmer. Best of luck to you. As the Brits say, Keep calm and carry on.

This is so helpful! I learn more here than anywhere else. I just had a genetic panel done and, as you say, it was mostly about family history and connective tissue disease. I also have Rheumatoid Arthritis and didn't realize that could be a factor with aneurysms. I see my reumatologist this week and will talk to him about this. The full genome test is very expensive and the geneticist I saw didn't recommend it for me. I'm 78 with a 4.2 AAA. Your advice about coping strategies is excellent. I'm a total, bloody heathen as well and I miss wine, but I have a few very close friends with whom I can talk about everything and anything. That helps enormously. If you don't have friends like that, a therapist is a good idea. I've had two on separate occasions in my long life and found them very helpful for what I was going through at the time, You've got me wondering whether I should go to Mayo or Cleveland or somewhere. My cardiologist says he doesn't think that's necessary. I have yet to talk to a surgeon. I'd probably feel better if I did. I go back in a year for another CT scan. It's a lot to think about. I wish you the best as you navigate these choppy waters.

I did get that ANA test. I ordered it myself through WalkInLabs.com. $48 for Quest lab with detailed pattern analysis. Holy poop...

I knew this might also be a factor, but really didn't want it to be: systemic sclerosis.

I've got like five nucleolar speckled patterns going on, and they all point to this. Rats.

It would be very nice to get a doctor in charge of all this. I am tired of being my own doctor.

Thanks for this info, though I'm sorry you didn't get the news you wanted. $48 certainly sounds better than thousands. I'll look into this. What about 23 and Me?