Newly diagnosed and/or living with ascending aortic aneurysm…anxiety

Posted by ginnycake @ginnycake, Apr 11, 2023

How do you guys cope with the knowledge? My 4.2 CM ascending aortic aneurysm showed up incidentally on a CT scan for a back sprain.
I haven’t had follow up as I write this. It is scheduled for the 11th with my primary care Dr. Will I get another scan of my chest to confirm it???I live in Hawaii… fearful of it not being taken seriously and having spiked high blood pressure from Stress and anxiety cause more damage. I would appreciate your insights… thank you in advance.

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ginnycake | @ginnycake | Jul 21 4:18pm

In reply to @pamela78 "This is helpful but scary. I guess there's no way for this not to be scary...." + (show)

I think it’s called a bovine aorta. It means you have four vessels branching off of it instead of three, which includes the vertebral artery coming straight off the aorta. The only time this makes a difference is during surgery. They have to be which is usually off the subclavian artery. I have a 4.2 ascending aortic aneurysm as well, which is remains stable for the last year and a half. It measures somewhere between 4.0 and 4.2 depending on how the scan is read, it’s one of those things where you eat as well as you can to keep your cholesterol down keep your heart rate and blood pressure down and then exercise aerobically moderately and, don’t let yourself stress out because it’s blood pressure spikes that are the problem. I really don’t know about sufficiency or how severe it is. I think it might go from mild to moderate to severe. I wish you peace of mind.

pamela78 | @pamela78 | Jul 21 6:26pm

I guess we're all trying to find peace of mind. At least it's good to know we have company. I'm having a transesophageal echocardiogram on Tuesday. That should give additional information to the CT scan. I walk everyday but am now afraid to pick up anything heavy. I'm on blood pressure meds. and a statin and have lost some weight. I intend to lose a bit more. I figure if/when I have surgery it would be better to have a trimmer middle. Thanks for you comments.

moonboy | @moonboy | Jul 28 9:33am

You’ll be all right. You’ve got incredible awareness of your condition and doctors who care about you. The key is for you to keep your blood pressure down, relax, and have the surgery if it’s recommended. This is not the kind of surgery that is optional and the medical community is really good at statistically determining the optimal time to have the surgery. You’ll be OK and we’re glad to have you here.

georgeh | @georgeh | Aug 6 4:21pm

In reply to @bill66912 "I think that everyone "freaks out" a little at first. I think we'd all be liars..." + (show)

@bill66912

I think that everyone "freaks out" a little at first. I think we'd all be liars if we said that we didn't.

But like any other life event, like losing a big job, or a divorce; allowing the emotions to work themselves through is necessary. Then, you can come out the other side with a clearer mindset.

I had a family history of Aneurysms; my Dad had two abdominal Aneurysms, about 15 years apart, and died from the second one because he refused to get follow up checkouts after his first surgery in 1987. My Ascending was discovered during a routine Calcium Score CT. Yes, it was scary. In fact, I felt myself "checking out" as I was sitting in my new Cardiologist's office, as he was explaining all of this new information to me. I freaked out inside to myself for about a week or so. I have some experience with yoga and meditation; so I decided to use this event to "go inside more"; that is to say to use the experience to slow down a little bit (not entirely), do more hiking instead of 160 bpm bicycle hill climbs, meditate more, educate myself on this new thing I'm living with, a new diet that I need to embrace, and practice what I preach more; which is to try to "be" with this new reality as much as I can; and let it teach me whatever its going to teach so that I can further myself in my life a little bit. I know that sounds a little New Agey and weird; but this is how I want to approach my experience with this. Seems to work for me.

As far as a "what's next" - for me, my Cardio has ordered another CT, this time with the injectable dye to check the heart valves, and to confirm the aneurysm size, etc. Idk what's after that, I suppose we'll see. Mine is initially measured at 4.5x4.5 cm, ascending.

I have found an App that works with my Apple Watch called Pulse Alarm; it allows one to configure a max heart rate while exercising; and it will both vibrate and audibly beep my watch when that rate is met or exceeded. My Cardio set a max heart rate for me at 130 bpm. It eliminates the hard bicycling that I used to do, but that's OK with me. I can still to the gym (both lighter cardio and weight machines) with the help of the Pulse Alarm app.

It's gonna be OK. It's scary, yes. But we're gonna be OK. One day at a time. Keep up with us on here, too.

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Interesting to hear about your Pulse Alarm app. What did your cardiologist recommend for a setting. I play a lot of doubles tennis with a 4.6 cm dilation. thanks!

dani12 | @dani12 | Aug 6 11:33pm

I had the same test that found my 4,2 cm. Six months later, I had a different test where they injected iodine. It showed 3.9. They said the that test was more accurate to measure. I went home and don't have to come back for a year.

Bill Schmidt | @bill66912 | Aug 7 7:25am

In reply to @georgeh "Interesting to hear about your Pulse Alarm app. What did your cardiologist recommend for a setting...." + (show)

Hi, George -

When I was initially diagnosed in 2023, the Ascending Aorta measured in at 4.1 cm. This year, it's 4.8.

Both from my Cardiologist and also from my own research, I learned about what actions or things put the most stress on the Aorta; particularly the area of the Ascending part of the organ. Heart Rate, Blood Pressure, and a rush or "surge" of blood supply in response to a very difficult physical action like lifting something from the floor that's very heavy (a "deadlift").

My Cardiologist suggested keeping my heart rate under 130 bpm, and to avoid any physical activity that would cause the sudden rush of blood to supply the muscles; anything that made me "grunt" in other words. Like a deadlift in the gym (or at home), climbing a big hill on a bicycle, like that. Any activity that required a big surge of blood supply, thus putting strain on the Ascending part of the Aorta is what we should be avoiding.

Hope this helps!

martinkennot | @martinkennot | Aug 14 9:40pm

In reply to @ginnycake "Thank you for sharing your experience and how you cope. I think I’ll get that watch..." + (show)

I take both now.
I am one year post-op.
But I have a full-length descending aortic dissection and they are keeping it in check.

summer230 | @summer230 | Aug 17 9:41am

In reply to @dani12 "I had the same test that found my 4,2 cm. Six months later, I had a..." + (show)

I had the dye test as well and it went from 4.3 regular CT scan to 3.9 with the dye test. Watch and wait period. I'm on meds for high cholesterol and blood pressure. I need to exercise more and lose weight; drink less, and eat more healthy. Going for the echo cardio on Tuesday. One day at a time but I find this group helpful and know it's more common than I thought. Thank you all for sharing.

suzie71 | @suzie71 | Aug 17 10:10am

I have a Abdominal Aortic Aneurysm since 2020, and I have it monitored for size. I do get concerned, but I am glad they found it on ultrasound that I had. I just keep thinking that as each year passes there are more and more advances to the surgery. We have better plans of treatment then we had years ago. It is a major surgery, but I just keep praying and trusting God to handle it for me.

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