Aortic Aneurysms – Introduce yourself & meet others

Welcome to the Aortic Aneurysms group on Mayo Clinic Connect.

An aortic aneurysm is a bulge in the wall of the aorta. The aorta begins deep in the heart as it emerges from the powerful left ventricle, gently arching over the heart, descending into the chest, and finally into the abdomen. Some aortic aneurysms can be harmless; others can lead to catastrophic problems. I invite you to follow this group and connect with others, share experiences, exchange useful information, and learn about aortic aneurysms.

Get started rby clicking the +FOLLOW icon on the group page here: https://connect.mayoclinic.org/group/aneurysms/

There are some great conversations going on right now that I think you’ll like. Grab a cup of tea, or beverage of your choice, and lets chat. Why not start by introducing yourself?

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

@pittsburghdad

Hello. New to forum. Male 57. In generally good health: competitive marathoner (ran Boston a couple of times) and rower for many years but with borderline blood pressure and cholesterol. Recently diagnosed with an enlarged ascending aorta (5.0 cm) as part of a precautionary calcium CT scan done as part of my annual physical. The news came as a bit of shock since I was without symptoms. Doctor says I can have a procedure now or monitor it every six months and wait until it reaches 5.5. I'd prefer the latter. Trying to figure out permissible physical activity ranges (heart rate limits and weight lifting limits). I saw some fairly recent research in JAMA (Association of Ascending Aortic Dilatation and Long-term Endurance Exercise Among Older Masters-Level Athletes) indicating my situation is not that unusual for competitive older athletes (i.e., 45% of Head of the Charles rowers who were screened had a similar condition). Would be curious to hear from others in a similar situation and what they have done.

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I was 54 when i had my surgery 4 years ago, I was in very good shape and exercised frequently (not as extreme as you), never smoked, they actually found my 5.2 Ascending AA after I broke my leg after falling from my MTB. Based on my body size (aneurysm was considred too large) and physical shape (minimum risk duing surgey) my surgeon encouraged me to have it fixed as soon as possible, had to wait unil my leg healed from surgery a bit since they want you walking right after. I actually wanted it done immediately, couldn't handle the stress of knowing I had a ticking bomb. The main thing you have to watch is your BP, they never said anything to me about Heart Rate, and they limited my weight lifting mainly because when you push we tend to hold our breath and during heavy exertion while holding your breath BP spikes puntually to very high levels (I shared a video in this forum, different discussion, of an expert explaining the reason and how high your BP can get to at that moment). of course I was also limited on my exercise due to my broken leg. The surgeon gave me >99% probability of no complications, I was out of the hospital in about 5 days, back to work in 3 weeks. I am back at exercising everyday with annual check ups (I have a bicuspid valve which contributed to the AAA) to check on my valve.

Hope everything goes well for you

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@fjc1962

I’m in exactly the same boat as you, and it looks like we have Pittsburgh roots in common also. I’m a couple years older than you and my AAA is also at 5.0cm. Mayo advised be to continue to monitor right now since it seems to have been stable for several years. I don’t lift anything over 25 pounds but have been encouraged to continue other physical activity. Are you being monitored by Mayo?

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No, I am not.

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It depends on your level of risk. My aorta dissected in 2015 at 50 years old. I was in the hospital cardiac ICU for about three weeks with two weeks in a coma. Your chance of surviving skyrockets if they do a scheduled, non-emergent, surgery. Most people who have a sudden AA dissection don't survive it. John Ritter, Alan Thicke, Lucille Ball. Knowing what I now know, I would elect to have the surgery if its an option. That way, you can prepare all of your estate documents, organize things for your spouse, arrange work leave, etc. Basically, it's the difference between scheduled a tire replacement when you see the bulge, versus having it blow out at 75-mph on a busy freeway. I'll take the former. Having survived the latter, I can tell you I would never risk it again (not that I'm going to get the chance). The dissection pain itself was so excruciating that I cannot describe really. It was like someone was tearing the skin off my back. Moreover, it happened on a San Diego business trip 1,600 miles from Minneapolis. It caused great trauma to my wife and family. It was expensive and I barely survived. I had blood clots, memory loss, damage to my vocal chords from emergency intubation, and a $1.4 million hospital bill (all but $13K paid by my medical insurance).

So, if I had it to do all over again I would elect to have the scheduled surgery in my hometown, on my schedule, after I had completely prepared my wife, kids, and clients for what was to come. Talk with your doctor.

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I’m in exactly the same boat as you, and it looks like we have Pittsburgh roots in common also. I’m a couple years older than you and my AAA is also at 5.0cm. Mayo advised be to continue to monitor right now since it seems to have been stable for several years. I don’t lift anything over 25 pounds but have been encouraged to continue other physical activity. Are you being monitored by Mayo?

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Hello. New to forum. Male 57. In generally good health: competitive marathoner (ran Boston a couple of times) and rower for many years but with borderline blood pressure and cholesterol. Recently diagnosed with an enlarged ascending aorta (5.0 cm) as part of a precautionary calcium CT scan done as part of my annual physical. The news came as a bit of shock since I was without symptoms. Doctor says I can have a procedure now or monitor it every six months and wait until it reaches 5.5. I'd prefer the latter. Trying to figure out permissible physical activity ranges (heart rate limits and weight lifting limits). I saw some fairly recent research in JAMA (Association of Ascending Aortic Dilatation and Long-term Endurance Exercise Among Older Masters-Level Athletes) indicating my situation is not that unusual for competitive older athletes (i.e., 45% of Head of the Charles rowers who were screened had a similar condition). Would be curious to hear from others in a similar situation and what they have done.

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@jimmorris900

Hello to all. I'm five years out from my valve sparing aortic root replacement. I was dilated to 52cm. My was partially due to I have marfan syndrome.

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Hi John. Glad to hear your doing well. I'm in the waiting stage right now. I also an a ARA. My aneurysm is at 4.5 cm currently. This waiting stage can get worrisome sometimes. How did you deal with that? Thank you!

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@heather1976

Hi, my name is Heather. About 9 months ago during a scan for another issue my doctors found I have an abdominal aortic aneurysm (up to 3cm) and a right common iliac aneurysm ( up to 2.2cm). Apparently it is very rare for someone my age, sex and health and the shape of them is also very strange apparently. I’m 47, female and otherwise in good health. I am an ex smoker however. And my grandfather died of a ruptured aneurysm in his 50’s. My aneurysms are both the saccular and apparently even stranger that they have a very odd shape to them both. Almost like a tube. I’ve read saccular aneurysms and being female are both circumstances that make them more likely to rupture. About 5 months ago I had a full body MRI to check the rest of my arteries and it came back ok, thankfully. I had to ring the vascular specialist’s office this month (January)to ask when I’d be sent for another scan and after a few days they told me it would be May- over a year after the first scan. I presume the MRI would have been used to also check any growth development in the two they’d found already? I may also have a small umbilical hernia. In the last couple months I’ve been getting a dull intermittent pain around and to the right of my belly button. Should I be worried about this? I mentioned it to the receptionist when I called the vascular specialist to ask about getting a scan. So I’m guessing they aren’t worried, although she never directly spoke of it to me, but it’s making me very nervous. Any suggestions as to what, if anything, I should do? At what point should someone go to the emergency room if they have pain in the area where their aneurysms are? Thank you.

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I would ask for an ultrasound on the area around your nelly button ASAP. It could be your aneurysm, or your hernia or a variety of other thibgs. The ultrasound will give you answers and isn’t as expensive as an MRI. If insurance won’t pay for it and you can afford, it tell your Dr. you want it anyway, regardless of the insurance and get it done .

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@moonboy

I was 50. I had 5 kids and a wife. It was a major surgery with weeks of coma. I would not do it at 81. There was so much pain and misery. I am hoping that I live to 81. I want to die quickly and I would not have surgery again knowing what I know. Most people who suffer from a complete dissection do not survive.

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I suppose this means I can cancel on the saving for my old age plan. The mutual fund "financial adviser" tell my I should invest any spare dollar in thier funds. I am starting to suspect their sincerity. Thank you for the advise I quit alcohol and cigarettes 40 years ago
I had a lot of fun when I was drinking heavy. Now I have something to look forward to.

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@8570

What is the failure rate of this surgery?

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It depends upon a lot of factors. First, if it's an emergency situation, your odds drop markedly. Think of it this way: If you knew you were going to blow out a tire on the freeway, you'd pull over, get the spare ready, call for help, and pull far off the road. But, if you were going along at 75 MPH and the front driver's side tire suddenly blew, in a tunnel in the middle of nowhere, you might not have the same result.

Survival depends upon immediate diagnosis with a cross-sectional CT scan or bedside ultrasound. If you're across the street from the Mayo Clinic, that helps. If you're up North in the woods by yourself, well, you're probably not going to survive a dissection. The survival rate drops by 1% an hour if its untreated, although once it fully dissects you can bleed out very quickly.

The takeaway is that if your surgeon recommends surgery, get a second opinion to confirm it, and then do it. Waiting until it happens is too late. It's the most complex surgery there is and you want to make sure your surgeon is fully prepped, well in advance, with all the blood/plasma/staff/resources necessary for a great outcome.

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@8570

I am 81 have AA wonder if I would survive the operation. Perhaps I would be moved to end of surgery list (triage)? I talk to friends in their 50's they have all been checked for this, I live alone apparently if this blows out I wouldn't have time to phone ...ever.

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I was 50. I had 5 kids and a wife. It was a major surgery with weeks of coma. I would not do it at 81. There was so much pain and misery. I am hoping that I live to 81. I want to die quickly and I would not have surgery again knowing what I know. Most people who suffer from a complete dissection do not survive.

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