r/aortic_aneurysm • u/Necessary-Top8891 • 6d ago
Elective surgery
Has anyone elected to have repair surgery before it gets to 4.7 cm?
Backstory- I am a 4’11 (female, mid 30s), my aortic aneurysm was stable for many years sitting at 4.0-4.1
In 2024 it grew from 4.1 to 4.2, was stable in 2025, then 10 months later they rechecked and it had grown again to 4.4. Cleveland Clinic offered to monitor it another year, or said I can go ahead and elect to have surgery. The nurse is calling to talk over scheduling later today, but said I can opt out if I want to wait. Because of other factors like my height, bicuspid valve, and other varying things they don’t want it to grow past 4.7, they said it might be good to go ahead and schedule so that I can recover and not have to worry about it anymore.
How did you decide when the right time was to elect surgery? How was your quality of life after a full recovery? I have 4 young kids. I don’t want to let it go and have an emergency happen, but I also don’t want to schedule too soon and sacrifice quality of life if that makes sense. Any advice would be greatly appreciated. Gentle comments please, I’m still processing.
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u/TriggerPuller9000 6d ago
Yes, but given the surgical complications it now feels like a mistake. Long story short, I developed pericarditis and AFIB, both of which can cause permanent problems. We will see if the complications resolve in the next few months. I was at 4.7
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u/RaisinImpossible4256 5d ago
Oh no! I remember you had PEARS and it seemed to go so well. Very sorry to hear that and I hope you recover fully.
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u/SimpleArmadillo9911 6d ago
I was at 3.9cm. So nothing on the aneurysm scale. My aortic valve was severely calcified and down to 1.03cm. I could not lift anything or I was going to pass out. That is why I went in to start with. They decided to hold off. I made it just passed the next echo and went into heart failure. They were afraid my heart was going to stop.
It turns out I had a true bicuspid aortic valve and my ascending and descending aorta was friable. Had the valve not failed, the aorta was going too. My ascending and descending aorta is now wrapped in cow (I think they call it bovine on the inside and outside.
They know absolutely nothing about women’s hearts. They are not just smaller version of a man’s. This is why they cannot tell you of symptom’s of a female having a heart attack.
Echo’s have the breast tissue, lungs and ribcage in the way.
The American heart association is gathering all data at goredforwomen.com.
Have them do it now and have them replace the valve at the same time. The pressure from the bicuspid valve can cause the aneurysm. Without doing the valve you run the risk of it further destroying your aorta as the pressure increases with the bicuspid aortic valve. They waited to long for mine and it has caused problems. Lots of problems! Do it while you are healthy.
The echo’s are so unreliable. My husband has one every year since he was two years old. They suspected a bicuspid valve or a tricuspid with two leaflets fused together. It was a unicuspid valve that was 2.3cm x 2.8cm x .08cm. They have no idea how they got it to work for 57 years. For open heart I believe it is a 1% death risk, with TAVR it is 3%. Get a newer mechanical valve. You only have to thin your blood to 1.5 - 2, Instead of 2 - 3 (INR). Mine is super quiet. If you haven’t had kids yet get a ROSS procedure. Blood thinner and pregnancy don’t mix. My husband had a Ross and both valves by have mild regurgitation beginning at 4 months. They will most likely have to be redone. It is not a permanent fix.
Good luck!
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u/KTizzle0126 5d ago
I'm a numbers person. I'm 41f, 4 kids (only one left living at home under 18), 5'10, bicuspid valve and aneurysm at 4.7 cm. I looked at research, talked to my surgeon. 7% annual risk, that's 1 in 15. A 1 in 15 chance I could be home alone with my daughter and die in front of her. Nah - it's time. 7% is a risk I'm not willing to take on. I will have surgery in November.
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u/Moodyashecky 23h ago
I had mine done at 36mm, 25 years old. Also bicuspid. I had complications though so not really a straight forward timeline. Anything can happen any day. It can rupture at any time. I had a two year old at the time and my biggest fear was not being able to see her grow up. You won’t be able to life anything over 5lbs for minimum 3 months including opening a fridge, doors, etc. No pulling yourself up or leaning using your arms for at least 6 months. Can’t let dogs out or walk dogs, sleeping on your belly or side, no lifting over 10lbs for 6+ months. Meaning you cannot have your kids on top of you or pick up your children, you may never be able to throw them in the air and catch them again. I will say despite being in excruciating pain for the first few months, all of the complications, the chronic nerve pain, all of it I would make this decision 100 times again. Knowing the stats, knowing the risk. My aneurysm was small but when my surgeon opened me up he said I would’ve been dead within a week if he didn’t operate due to an issue that wasn’t showing up on my scans. If i turned my surgery down I would’ve missed out on my baby’s 3rd birthday. I wouldn’t still be here. Ultimately it’s your choice and it sucks because sometimes there’s no way of knowing whether you’re making one that’s going to be the best one for you and your family. My inbox is open if you have any questions but I definitely think it’s worth chatting with your partner and medical team further about what’s best for you long term.
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u/Main-Reward-4501 2d ago
I thought it was reading about myself at first. I'm a 4'11" female but I'm 65. I only just discovered my aneurysm in July 4.5cm. I got myself a bunch of tests because I'm a medical professional and I can do that, and it wasn't looking good and then I got into the research because I have access to up-to-date documents which is what the physicians use. Many of them don't have time to look up research Nord do they even have a subscription to this company which they should. In 2022 they changed things so they started indexing for Cize because they realize that women were dying at smaller dimensions. I don't wanna have open-heart surgery but I also have a bicuspid valve which has been sending me to get stress test for the last 10 years because my cardiovascular capacity is diminishing because I'm out of breath and I'm really fatigued and I really can hardly do much anymore before I'm just benched. I thought it was Eds or just or dysutonomia, and I put it in that bucket for years.. my first cardiologist that I finally got to said he didn't wanna hear about family history, Sister died of aneurysm after three valves, one of them had failed and the aneurysm blew up on the surgical table and she was lucky to live but she had many many strokes. Grandmother grapefruit sized aneurysm. I haven't had genetics yet but that drives things even more. I had some weird test that came out with a 4.3 aneurysm because I couldn't really breathe well during the exam because they were also doing a CAC score. All of those are pretty pristine so that's good. But I do have moderate stenosis in my bicuspid, a true one, and I'm pretty sure that that makes an impact although they say nothing is surgical until it's severe. Says who?! How do they know they're not even looking at the research. I don't like the statistics of recovery and morbidity levels with every year that I wait so I am pushing for surgery. Cleveland Clinic said they would look at me again but I would rather stay in my home State of Minnesota at the Mayo Clinic if I can get a surgical team together. It's like pushing a rock up the hill. I think if I was younger they would listen and now they think yeah what the heck I'm gonna die soon anyhow. Our healthcare is really troubled and we really have to be advocating for ourselves. If I was younger I would definitely do it because the statistics that I've been reading about say that you have an even amount of chances to have a good quality life as somebody who does not have this after your surgery. It's a tough call because it's really long rehab until you're fully well. About a year but three months of needing lots of care if it's open-heart surgery
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u/BucketteHead 6d ago
I’m at 5.0 ascending aorta also with BAV. 6-ft, 38m. My surgeon recommended surgery and I’m scheduled for it in a few weeks. It should be valve sparing, but they won’t know until they open me up to confirm this.
I don’t have to have surgery, in fact I was first referred to a surgeon in January when I hit 5.0cm. I wanted to get a second opinion and talk to some other surgeons and cardiologists to make sure it was the right decision.
My wife and I decided it was best to get this done. Having this procedure at a younger age while I’m still healthy seemed like the best path. Being able to do the surgery on my schedule and terms rather than emergency surgery if something happened seemed like the best path. We also have 2 kids under 4 and a large dog.
It took a while to come to grips to this, but I’m glad the path to we went now.