Aortic Aneurysms – Introduce yourself & meet others

Hey Matt, welcome. I survived an ascending aortic arch dissection in 2015. You’re lucky you know you have a problem. I did not. you do not want to wait to find a surgeon. I had mine done at UCSD La Jolla on an emergency basis. Less than 45 minutes between the onset of pain and open-heart surgery. To say it was a surprise would be the understatement of a lifetime. I would get a referral to a good thoracic surgeon that is in major top 50 Surgical Center. My opinion is that you want to schedule surgery maybe on a Monday morning when the surgeon is fresh hopefully off of a relaxing weekend. There was just a study done saying that surgical outcomes are a lot better on certain days of the week. Google it because I frankly can’t remember exactly what it said, but there are definitely better days than others to schedule this kind of major surgery. Once you find a good thoracic surgeon who can look at your scans, they can give you advice on when you will probably want to seriously consider having the surgery. My understanding is that when it’s done on a scheduled planned basis, the outcomes are always a lot better than how I had it which was as an absolute 100% five alarm emergency. It was no fun. No doubt this is gonna be a challenge for you but here I am 10 years later. On my way to San Diego again from Minneapolis tomorrow morning. I live here and I had my dissection during a business trip to California in 2015. I love San Diego, but I have lots of mixed feelings about how much my life changed in an instant there 10 years ago. In any event, start looking for sure now once you get to 5 cm you’re going to be a candidate for Surgery. Keep your blood pressure down. Tell you no grunting when you’re lifting, and get good advice from that thoracic surgeon. Cardiologist do not do thoracic surgery surgery. They have some insight, but nothing like a good fashion surgeon. Who’s gonna do the work. Peace.

Hi I'm Steve.
Just told I have mildly dilated ascending aorta with some calcification.
Not sure of size yet. Getting referral to cardiologist.
64 years old with some other medical history.
Frankly, really struggling with this diagnosis.
Any advice, comfort would be appreciated.

Hi Steve,

First, you want to find out how many centimeters your aneurysm is. Short people can’t wait as long as tall people. Tall people can wait sometimes all the way to 6.0. From reading everyone’s input in this support group it seems like 5.5 is about the average time we have until we need to undergo surgical intervention. For ascending aortic aneurysms, you need to know where exactly the aneurysm is located - an MRI or CT scan will tell your surgical cardiologists the answer. From what I’ve read, if it’s too close to the aortic root, you may not be a candidate for surgery. We’re talking open heart surgery at this point as the only option; however, they just did what I think was the first endovascular surgery on an ascending aortic aneurysm over in California at Stanford. The medical community is becoming more and more creative so we have lots of hope. Just get as thin as possible to make it easier for the medical community to help you. Stop smoking and start an exercise program under your cardiologist watchful eye. Many of us have lived for years, knowing we have an aneurysm. This is not fun but reality. God is in control. Sara💐

Hi all, thanks for being here, I'm really glad I found this group as my anxiety is up again about my descending thoracic aortic aneurysm. I've been all alone with this since 2007 and basically forgot about it after 2012 when they stopped scanning me, until September 2024 when I requested a scan before I headed out alone on an extended RV journey. Now I'm moving to Florida and really want to be evaluated at the Mayo in Jacksonville. What do I do next? Also, can anyone relate to my "watchful waiting" journey?

More on my journey: I was originally diagnosed in 2007 with a 2.9 cm "non-penetrating aortic dilation with multiple outpouchings." In 2012, my then cardiologist said it was stable and no reason to scan me ever again, unless I became symptomatic, which I may have been a couple of times, but scans were negative and determined to be panic/anxiety (gee, I wonder why??). In 2013, I was also diagnosed with an undifferentiated connective tissue disorder, which my mom and her grandfather also had. I've never had any follow up on that diagnosis. Then in September 2024 before I headed out on an extended RV journey alone, I requested a scan, and my cardiologist of two years flipped out when she saw the results. She referred me to vascular surgery and surgeon says noooo, we don't do stent grafts for a 4.1 cm aorta with penetrating ulcer with pseudo aneurysmal components, come back in six months for another chest CT, which I did a couple weeks ago. Now the largest transverse diameter of my proximal descending thoracic aorta has grown from 4.1 cm to 4.2 cm, and the PAU has grown from 1.6 x 1.7 cm to 1.8 x 2.0 cm. I'm really hoping I can get some better coordinated care and more complete evaluation at the Mayo in Florida and also feel more confident about my plan of care, especially any exercise limitations. My current surgeon says no limitations on exercise or anything, but I just read something on the Univ. Michigan website that says there's anecdotal evidence that playing tennis (one of my favorite activities) can increase the risk of dissection! I'm just feeling very confused and alone so yeah, hoping someone here can relate and have any suggestions. Thanks!

Hi Steve,

First, you want to find out how many centimeters your aneurysm is. Short people can’t wait as long as tall people. Tall people can wait sometimes all the way to 6.0. From reading everyone’s input in this support group it seems like 5.5 is about the average time we have until we need to undergo surgical intervention. For ascending aortic aneurysms, you need to know where exactly the aneurysm is located - an MRI or CT scan will tell your surgical cardiologists the answer. From what I’ve read, if it’s too close to the aortic root, you may not be a candidate for surgery. We’re talking open heart surgery at this point as the only option; however, they just did what I think was the first endovascular surgery on an ascending aortic aneurysm over in California at Stanford. The medical community is becoming more and more creative so we have lots of hope. Just get as thin as possible to make it easier for the medical community to help you. Stop smoking and start an exercise program under your cardiologist watchful eye. Many of us have lived for years, knowing we have an aneurysm. This is not fun but reality. God is in control. Sara💐