Aortic Aneurysms – Introduce yourself & meet others

Hi everyone,
I am a retired science/health teacher, age 69, female, 5'11, 225#.

I was diagnosed with a 4.6cm ascending aortic aneurysm in 2016 and have been monitoring it yearly since then. (It is interesting how the measurement can vary by facility/equipment/radiologist. I have been measured as low as 4.3 and as high as 5.3.) I went to the Mayo Clinic in Rochester in October and met with a cardiologist in their Aortic Clinic. After all the tests, the latest measurement is 5.3 at the root and 4.2 ascending. My aortic valve has moderate regurgitation, most likely from the dilated aortic root pulling on it. This alone is probably not enough for surgery. But, I also have 8 points on the Ghent scale for Marfan Syndrome, even though I don't have a known genetic mutation for Marfan. There is a familial link as my brother had a similar aortic graft, then TAVR in TAVR, and pacemaker. All these things together make me a candidate for surgery at this time.

My surgery is scheduled for April at the Mayo Clinic. The plan is to replace the aortic valve with a tissue valve and a Dacron graft from the root up to the arch. I am comfortable with the idea of surgery, especially when the alternative might be a possible dissection. I know it is better to do this at age 69 rather than 5 or 10 years from now. I am somewhat concerned about the recovery: cardiopulmonary bypass dementia, sternotomy pain, movement in daily life with a sternotomy, recovery time, etc. (I'm one of those people who needs to be prepared for anything, and if it doesn't happen, great.)

My local cardiologists added Amlodipine and increased my Metoprolol prior to the upcoming surgery.
So, for the next 75 days, I will be learning as much as I can, losing weight, walking, and managing stress. The stress part is hard as I am also helping to care for my Mom (91) and Dad (96) who have health issues.

Five generations of my family have been Mayo patients. I know the expertise and care there are world-class.

Any information and advice are welcome. Thank you.

@davidneal
I have fibromuscular dysplasia in the cerebral artery and carotid arteries and some in the spine, we get aneurysms and dissections. I work as a nurse.
We should not lift weights at all and not run because it increases blood flow in the arteries, from the heart to the femoral arteries it is not a long way. So I do nothing like that, long walks are my exercise.

@caroline58
Thanks very much for your reply. I will be talking to my GP and others about appropriate exercise, but the message certainly seems clear to reduce straining, weights, running, and anything else that spikes blood pressure. I am hoping that swimming (freestyle) will also be OK, as I live near the sea.

Hi, my name is Teresa and I am actually from Australia. Whenever I need to know anything medical I always look up Mayo clinic.
Around 8 years ago I went to the doctor with chest pain, shortness of breath, after a few tests I was diagnosed with bicuspid valve with mild stenosis. I started seeing my cardiologist every 2 years and just before Christmas this year I went for my usual stress test etc and had an abnormal test so had a ct scan, I followed up with my cardiologist a week later and he told me that my aorta was much bigger and he was referring me to a surgeon. I was confused and felt that any question would sound dumb (I thought I should have known what a large aorta meant) that’s when I asked the question on google and the Mayo clinic gave me the answer, I had an aortic aneurysm. so the surgeon called and got me in within a week. This stressed me, he explained to me that I had a 47mm thoracic aortic aneurysm and that he would have to keep a close eye on me. So I am scheduled to have a follow up ct in November 2026. The growth of my aneurysm I was told is faster than normal as it went from 44mm to 47mm in 2 years.
I feel like I have not been well informed because the first time I heard someone tell me I had an aneurysm was just a couple of months ago and I didn’t and still don’t know what questions to ask or what to do with this shock information. I have been very stressed about it.

@teresalee Hi Teresa, it is normal to feel stressed by this whole situation, every one in this forum has gone through the same feelings. The good news is that you found you have an aneurysm before it became an emergency, there are plenty of stories of people that have dissected and had to have emergency surgery in this forum and those are the few that survived.

You can monitor and plan, you seem to have the right care, a surgeon who is following you periodically and a cardiologist. At 4.7 cm your aneurysm is on the large side and seems to be growing so surgery is probably more a when than an if.

Take care of your body, keep yourself active, stay in shape without straining too much, avoid lifting that would cause you to hold your breath as BP spikes significantly during those moments. BP is the most critical element to control, your cardiologist should be helping you ensure you maintain it within your normal limits, high BP is the worst enemy of aneurysms even for short periods. Lastly try to keep calm (stress doesn’t help BP) you are doing everything right,, find activities that bring you joy and help you relax.

I had a 5.2 cm aneurysm repaired and also a bicuspid valve. The valve was left in place as it was highly functional, I get it monitored every year and at some point it will need replacement. In your case with symptoms of the stenosis already is likely they will replace it at the time of the repair.

The risks are highly related to your general physical health and whether you have other health issues. I was in very good shape and the surgery went as smooth as it could have gone, it is tough but I was out of the hospital in 5 days back to work in 3 weeks. Everyone different though.

Take care and stay calm (easier said I know) you are doing the right things.

All the best

Hi Teresa! First, take a breath. What you are feeling is completely understandable, and nothing about your reaction means you missed something or should have known more. You were told pieces of information over time without the full picture being put together for you, and that is disorienting for anyone. You did exactly what a thoughtful patient does. You listened to your doctors, followed up, went to your appointments, and when something didn’t make sense, you went looking for reliable information. Finding Mayo Clinic and learning the word aneurysm on your own is not a failure on your part—it is a gap in communication that happens far too often with aortic patients.

A 47 mm thoracic aortic aneurysm in the setting of a bicuspid valve is something that absolutely deserves close monitoring, and your concern about the growth rate is reasonable. The stress you’re feeling often comes less from the number itself and more from not knowing what it means for your future, your safety, and your day-to-day life. Uncertainty is the hardest part. Your job right now is to REDUCE your stress. Posting here will help with anxiety and most posts get responded to pretty fast. @houston13

Here are the most important things to anchor to right now. Knowledge is power. Stay very close to a major medical center that has a dedicated thoracic aortic specialist department, not just general cardiology. Meet your thoracic surgeon now, not the morning of surgery someday. Even if surgery is not imminent, that relationship matters. You deserve time to ask questions, understand thresholds, and know what the plan is long before decisions become urgent.

You are not behind. You are not late. You are not being dramatic. You are learning about a condition that most people only hear about when something goes wrong, and you are doing it in a controlled, proactive way. For a bit of perspective: I survived an acute Type A aortic dissection in 2015 and emergency open-heart surgery. I learned the hard way how critical it is to understand your aorta, your numbers, and your care team before a crisis. The fact that you know now means you have power, options, and time.

You are doing the right things. Keep learning, keep asking, and make sure you are surrounded by specialists who do this every day. You're going to be fine. Peace.

@houston13 thank you for the advice. these are things I did not know. I was only told to lose a little more weight ( I am 5 foot 2 and 73kg so do need to lose around 20kg) and to keep my blood pressure down. Now reading about others experiences makes me feel less alone. I am so grateful I found this group.

@moonboy thank you so much, connecting with others that are going through or who have survived an emergency I feel is already helping me to feel less stress about it.

You're going to be fine. Knowing what you're facing, allows you to plan and to really have good care in place. This is not the kind of surgery you wanna have in an emergency – believe me I know it is really hard to survive when it happens emergently so I'm so thankful that you're here and I'm so thankful that you know that you've got an issue so that you can deal with it. Peace.

Hello my name is Joan,ihave a 59mmaortic arch aneurysm,it was found five years ago and is now 59mm. The doctors told me my BP must be kept low,anything below 120/80 is a must, I have had. manny tests but unfortunately I am unable to have an operation because of other health issues and I would not survive a 12 hour operation.As you can imagine I get very scared sometimes. I just wonder if anyone else is like me.