Thoracic aortic aneurysm: Anyone had surgery?

You are an inspiration. Thank you so much for sharing your story. God bless and keep you!

Thanks for this question and the opportunity to hear about other’s experiences! I have not had surgery, but just got a new opinion from a highly experienced and respected vascular surgeon and also his team at UF-Gainesville. My former vascular surgeon measured the largest part of my descending thoracic aorta dilation at 4.2 cm and the new team, three different ones measured and they came up with 3.5-3.6. So, yeah. Go figure. The surgeon said if I was ready to have endo stent graft surgery he would do it, as long as I was fully aware of the “small (~1%) but real risks from the surgery itself.” Then there’s the risk of dissection or rupture, they are guessing maybe 1%? Maybe all this is to say, that “watching waiting” can be a real mind f$*k.” This stuff is scary but 17 years since mine was discovered, I’ve lived a super full life with basically no restrictions. You will get through this too and this group is super helpful. I REALLY appreciate @moonboy again for describing what the dissection pain felt like. For some reason, I’ve never asked anyone! I’ve just sat inside my head this whole time thinking every time I get a muscle spasm, that I’m dissecting—at least the first few years I thought that which led to lots of ED visits and extra scans. No one seemed to ever be able to tell me what I needed to watch out for. So, I’m really glad so joined this forum and am no longer alone with this!

I hear you. And I feel the weight of your question in my chest, because I asked the same thing when I was 50 in 2015 and told I had a dissecting aorta and needed emergency open-heart surgery.

I had no warning. It was about 42 minutes between the first pain that I had and being cracked open. I had just finished teaching on my feet for 13 hours and was alone in a hotel room in San Diego when my Type A dissection happened. I didn’t think, “this might be dangerous” before that day. I didn’t feel fragile. But I was. Frankly, it was a ticking time bomb that I knew nothing about.

You’re in a unique position right now because you know you have a 4.2 cm ascending thoracic aortic aneurysm (ATAA). Surgeries typically not implicated until you get to 5.0. That means you have the gift of foresight—something I didn’t get. And that gives you power.

The short answer is: no, you probably shouldn’t be doing that job without serious modifications. Anything that involves intense straining, lifting, or spikes of stress—especially if you’re holding your breath while pushing or lifting (what’s called a Valsalva maneuver)—can increase intrathoracic pressure and put dangerous strain on your aorta. That’s not a scare tactic. That’s physics and physiology. It’s possible that the kind of work you do exacerbated or even caused the condition that you have. It’s really hard to say and I’ve spent the past 10 years racking my brain trying to figure out what caused mine and I’ve concluded that being overweight, hypertensive, and stressed out as a trial lawyer all were huge contributors to my condition.

We both know that life doesn’t always make it easy to walk away from a job. I did not walk away from mine, but I have made very serious modifications to how I live in my life. No more 13 hour teaching stints two days in a row. this is about survival and quality of life. You need to take this seriously and talk to your cardiologist and thoracic aortic surgeon—not just your primary care doc. Show them exactly what your workday looks like. Be very specific about the kinds of lifting, postures, stressors, and rest you get. Get their recommendation in writing if you can. That may help with your work.

You may need restrictions. You may need a new role. But what you don’t need is to go through what I did—the pain, the surgery, the risk of death—just to find out the hard way that your body had been trying to warn you all along.

You’re not weak. You’re informed. You’re strong enough to advocate for yourself and choose a safer path. And I’ll tell you from one patient to another: knowing is a gift because you can do something about it.

Let me leave you with this. I spent the entire day yesterday staining my cedar fence here in St. Paul. The sun was out. It was clear and dry and I just went to town on the fence. It was lots of repetitive, but not particularly heavy work to hold the paint sprayer. I try to avoid anything which involves grunting or straining. If it’s more than 30 pounds, I’ll leave leave it to the folks at Home Depot to load and unload. It’s not that I can’t do it. It’s that the hidden strain on a Dacron aorta is nothing I want to risk. Peace.

PS. Here’s what my morning looks like today and I’m thankful every day for every one I get.

Hello
I wish everyone will tell me that I am going to be OK.
By a MRI they found an aneurysm in my brain.
I have an appointment for August 28th. Doctor said that it could irrupt. I could die or be paralyzed honestly I rather die if it Gods plan.
I am 83. I thought healthy old lady..
Thank you
Carry

So it was about 1:15 in the morning and I had packed my bag to leave the next afternoon a flight back to Minneapolis. I felt tearing pain in my back like the skin was being peeled off my back. I thought I was having a heart attack and I called the front desk and asked them to call 911. I went out of my hotel room in San Diego. I was in an annex part in old town and so there was a second floor balcony. I went out of my hotel room in just a T-shirt and jeans in my bare feet and sat down on the ground and waited for an ambulance. So I had a great deal of pain and I knew I was in trouble, but I didn’t know what was wrong because I never felt pain like that. So I was conscious in the ambulance to the emergency room. The next thing I knew it was a couple weeks later and I was at a different hospital UCSD La Jolla, where I had my surgery. I am convinced that I saved myself by getting out of my hotel room and getting down to the street level where I can get help. It’s San Diego so it’s almost always warm and dry. Peace.

I'm curious. If you were alone in a hotel room, how did you manage to get help and how did your rescuers realize the trouble you were in? You were very lucky, it appears. Is that because of anything you were able to do or sheer good fortune?

I hear you. And I feel the weight of your question in my chest, because I asked the same thing when I was 50 in 2015 and told I had a dissecting aorta and needed emergency open-heart surgery.

I had no warning. It was about 42 minutes between the first pain that I had and being cracked open. I had just finished teaching on my feet for 13 hours and was alone in a hotel room in San Diego when my Type A dissection happened. I didn’t think, “this might be dangerous” before that day. I didn’t feel fragile. But I was. Frankly, it was a ticking time bomb that I knew nothing about.

You’re in a unique position right now because you know you have a 4.2 cm ascending thoracic aortic aneurysm (ATAA). Surgeries typically not implicated until you get to 5.0. That means you have the gift of foresight—something I didn’t get. And that gives you power.

The short answer is: no, you probably shouldn’t be doing that job without serious modifications. Anything that involves intense straining, lifting, or spikes of stress—especially if you’re holding your breath while pushing or lifting (what’s called a Valsalva maneuver)—can increase intrathoracic pressure and put dangerous strain on your aorta. That’s not a scare tactic. That’s physics and physiology. It’s possible that the kind of work you do exacerbated or even caused the condition that you have. It’s really hard to say and I’ve spent the past 10 years racking my brain trying to figure out what caused mine and I’ve concluded that being overweight, hypertensive, and stressed out as a trial lawyer all were huge contributors to my condition.

We both know that life doesn’t always make it easy to walk away from a job. I did not walk away from mine, but I have made very serious modifications to how I live in my life. No more 13 hour teaching stints two days in a row. this is about survival and quality of life. You need to take this seriously and talk to your cardiologist and thoracic aortic surgeon—not just your primary care doc. Show them exactly what your workday looks like. Be very specific about the kinds of lifting, postures, stressors, and rest you get. Get their recommendation in writing if you can. That may help with your work.

You may need restrictions. You may need a new role. But what you don’t need is to go through what I did—the pain, the surgery, the risk of death—just to find out the hard way that your body had been trying to warn you all along.

You’re not weak. You’re informed. You’re strong enough to advocate for yourself and choose a safer path. And I’ll tell you from one patient to another: knowing is a gift because you can do something about it.

Let me leave you with this. I spent the entire day yesterday staining my cedar fence here in St. Paul. The sun was out. It was clear and dry and I just went to town on the fence. It was lots of repetitive, but not particularly heavy work to hold the paint sprayer. I try to avoid anything which involves grunting or straining. If it’s more than 30 pounds, I’ll leave leave it to the folks at Home Depot to load and unload. It’s not that I can’t do it. It’s that the hidden strain on a Dacron aorta is nothing I want to risk. Peace.

PS. Here’s what my morning looks like today and I’m thankful every day for every one I get.