Dilated aortic root: What's safe for us to do?

There is a lot that is safe for us to do, but we need to show some extra care. I am 67 years old, 4.7 cm aneurysm at the root, no other conditions. I assume you are on a beta blocker as I am. I quit softball due to the sprinting, and no more heavy weight lifting due to the spike in blood pressure. But I still mow the lawn, jog, play with the dog (as well as my wife), and live my life. I figure if I take my meds and use good judgment I should be in good shape, and that has so far shown to be true. The aneurysm is a pain in the butt but doesn’t have to stop one from living an essentially normal life, with normal life expectancy.

I have a profoundly disabled son and have had similar fears. I’m sorry you are having to go through this. I’ve had a couple of years now of investigation and research. A gated ct scan or an MRI are actually pretty accurate for measurement. Echos require a very experienced technician as the heart is always moving. Where do you live and What are your healthcare options as far as what hospital system you can use?

My sympathy for your diagnosis. I was surprised to find I had a 4.7 ascending aorta dilation only to find with a CT that it and the root are 4.1. I live a day and a half drive from Mayo in Rochester. My intention is to go there if and when it progresses. A high volume, experienced team would potentially have solutions to your situation. And good doctors don't take second opinions as an insult. I've even read that Cleveland Clinic sends cases there when they are too complex for them. Best wishes and best of luck.

@jefftalley Please don't reply to someone's post if you're not going to read it thoroughly. I'm glad you can live your life normally.

@chrisn61
Thank you for your response and I'm sorry you can relate. I was diagnosed back in 2019 and I've had MRI's, CT's, and echo's since then but the measurements are always different and the dilation is expanding slowly. My other conditions put strain on my heart along with compromised connective tissue due to EDS. Every surgeon in the Oregon area hasn't been willing to work on me and claims the only option is open hear surgery with valve replacement. I'm willing to go to any hospital but due to my poor healing, fragile veins, and lymphedema - I need to avoid open heart surgery if I can.
Has anyone had success with TVAR for a dilated aortic root?

You may want to have a virtual 2nd opinion from Cleveland Clinic. They are a high volume hospital for aortic aneurysm repair. I did the 2nd opinion with them and ended up going there in person as well. I’m also a patient at Mayo- but they don’t have a virtual option for 2nd opinions as far as i know. You definitely want a high volume dr and hospital if you can and a place that has lots of experience with genetic predispositions . I know that both of those hospitals see a tremendous variety of cases. 🙏🙏

@politelykooky I’m can feel your being scared of dying I’m 46 I had a large skin removal surgery in on September 5, 2025 my aorta was normal regular size no problems easily got approved for my surgery I had lost 280 due to Bariatric surgery in 2013 and a revision in 2015. I had this surgery to save my life due to the fact my sisters passed in November 2012 age 35 and three months later in in February 2013. I have spent the last 13 years having a complete heart checkups testing had a loop recorder placed and I had been feeling safe since no tests ever not normal. I broke 3 ribs in July and mine measured 4.2 on the ct scan. I am am now deathly afraid both sides of my family have horrible heart problems one uncle age 27 aorta ruptured, my dad’s brother went in to get his aneurysm repaired and when the doctor came out he told my dad he had to get checked his was larger than my uncles. Family history heart attacks open heart surgeries with many passing away less than 50 years of age. I can’t get to the cardiologist until September 1st I feel like it’s fast growing going from nothing to 4.2 in less than a year. I don’t know if they will have me wait til it hits 5 which is what I have seen on google I just know I’ve seen too many family members be there one minute and gone the next. I too find it terrifying I don’t want to scare you more but there are some of us out there that are in the terrifying limbo what do I do I don’t want my blood pressure to raise so I’ve stopped doing a lot of things you are not alone just curious if you also suffer with pots I have that as well and I’ve heard most people with Ehlers-Danlos suffer from you don’t need to answer that if you do not want to. I’m praying you find some surgeons willing to help. I’m afraid that being only 4.2 I will have to wait as well I’m may just completely go crazy I’ve seen hearts problems take away my immediate family with no notice my first appointment is at University of Michigan Hospital

@kristien All of that sounds familiar. I have many family members with heart abnormalities and many of us, myself included, have POTS and MCAS as well, in addition to EDS. Since there isn't definitive genetic testing for all types of connective tissue disorders, surgeons are reluctant to work on you unless you have an official genetic diagnosis for EDS (or something similar) because insurance won't approve surgery for you before the 5cm dilation. The gold standard of getting approval for surgery. I'm convinced that's why so many people in the EDS community die suddenly. Doctors worried more about their success rates and insurability than the lives of their patients.
I hope for both of us that we find help in time.

Hi. I can understand your stress and feel for your situation. However surgeons prefer following the evolution of your aneurism that putting patients through major surgery which are physically demanding and can cause complications such as bleeding, infection or rejection. 5cm aneurisms can be followed easily and controlled with medication. Hope you find some peace through your journey and wishing you the best.

What exercises are acceptable?