Introducing myself as a new member:

One. Get a second opinion from a thoracic surgeon at a major cardiovascular care center like Mayo, UCSD - La Jolla, University of Minnesota Twin Cities, or University of Texas Houston. Make sure that you see a thoracic surgeon and ask for a referral from your cardiologist. As soon as you get to 5 cm they're going to want to do surgery so it sounds like you're close and you want to make very good friends with a good thoracic surgeon.

Two. I personally get scans annually, but for the first five years after I had a complete aortic dissection suddenly, I got scanned every six months with contrast. It's a lot but it's imperative that you know what's going on. 18 months seems like a long time between scans when you're as close to 5 cm as it sounds like you are. I'm not a doctor, but I'm also a survivor of an aortic dissection and I can tell you that you do not want to go through this on emergency basis. You need to know exactly what's going on inside your chest and the best way to find that out is to visit with the person who is going to repair it surgically.
Three. There are no shortcuts to the surgery. It is a median sternotomy (chest crack) and open-heart surgery. They do not yet have any way to do this any other way at this time. Don't be fooled by the word "stent" with respect to your aortic aneurysm. When they say stent, they're not talking about the kind of stent that your father-in-law got fed up through his femoral artery and got balloned to clear a clogged artery. What they're talking about is a dacron tube that is sewn in from the top of the aorta where it exits the heart down to some other location to repair the aneurysmal tissue. The aortic graft that I received is 13 inches long and 32mm wide. Your aorta is somewhere between the diameter of a C battery (26mm) and a D battery (34mm). Surgery is usually recommended when you're at 50mm (5cm).

Peace.

Thank you for your thoughts. 18 months seemed a bit long between scans to me, but I am not an expert. Sounds like my cardiologist is also not the most qualified one to make the call. Sounds like I need to get a referral to a thoracic surgeon. Finally, how do you know about my "father in law" and his experience with this, or where you just using that term metaphorically? Kind of did a double take there. Lol.

Just a guess. Everybody thought I got a stent. Instead I got two emergency open heart surgeries and weeks in a coma. You're gonna have a much better experience because you know you've got a problem and you're not going to allow it to go unaddressed. In my case in 2015, I had absolutely no idea what an aorta even was or that mine could explode. You're gonna be fine, but you need to find yourself a really good thoracic surgeon who cuts people open for a living and repairs aortas. A cardiologist is just not sufficient for this condition.

Wow. Sounds like you have been through the mill. Thanks for the encouraging words, and I am confident I will be okay, but maybe because I was fortunate enough to find out about this group.

Hi, Jeff.

Mid 4's here. Diagnosed in 2023. Was getting yearly CT scans and then had a scare that it may have been growing significantly, so started on 6 mos. scans. After one scan at 6 mos, it appears to be variation in readings, so apparently little or no growth, certainly no growth of concern.

Reasonable that you'd feel safer with a surgeon. That's who is monitoring mine. I see a cardiologist for CAC and the surgeon for the aneurysm. It's a little tricky because I don't plan to use the same surgeon if it needs repair; he's at a relatively small rural hospital. But, I'll cross that bridge when it appears to be anywhere near needing repair. Hopefully never.

This has been a very helpful group for me since the diagnosis. Welcome!

I Jeff:
I went to a vascular surgeon here in Florida because my family has a history of aortic aneurysms. At 78 years old mine was diagnosed at 4.8 cm. The Florida surgeon said see you in 6 months. I wasn't satisfied. Two months later I went to Johns Hopkins in Baltimore. Dr. Black, head of vascular surgery said aneurysm is not 4.8 it is 5.3. And also said it had not grown .5 in two months. Dr. Black asked when I wanted the stent placed in, but recommended he do it in the next two weeks. Bottom line, stent put in, examined with an MRI two weeks later. Results: Dr. Black said, go play golf, and stop by next year for an MRI. In the meantime if you have any problems, call me. Go get a second opinion!

Hey Jeff, 36 year old male here. Diagnosed with a 4.9 ascending aortic aneurysm in early November 2024. I was born with a bicuspid aortic valve and mild stenosis that hasn’t changed much in 36 years with mild to moderate leakage. When diagnosed my cardiologist wanted to follow up with me yearly. This seemed like way too long to wait between scans and checkups. Without a referral I sent my information to Mayo Rochester Thoracic Surgery. I had a phone call within 16 hours to get the process started of selecting a surgeon. After talking to Dr. Shrestha he said I can have my surgery whenever I would like but wouldn’t want me to wait much more than 3 months. I’m scheduled for surgery on January 28th. Definitely follow @moonboy advice and get in touch with a top-tier surgical center. If you have any other questions feel free to reach out!

I was diagnosed many moons ago, currently at 4.8 and probably have been there for about the last 5 years… I have echos yearly to monitor. Also have BAV and the most recent addition to my life has been a pacemaker for stage 3 heart block. Doing great now, but always wondering when the surgery will be as creeping closer to that 5 mark!??

I am curious, maybe a little paranoid…at the start of my last echo, the tech looked at my file saying he wanted to check my measurements from last time before, wrote them down, and then proceeded. Anyone else think this is a red flag for accuracy or is this standard protocol?

Listen folks. The only people who know how to fix this problem are thoracic surgeons. It’s a very complicated vascular problem and a cardiologist is not qualified to treat it, respectfully. A cardiologist should not be advising a wait and see approach at 4.9cm. They should be driving you to the thoracic surgeon who is in the middle of an
Open heart surgery with another patient. Here’s a few pictures of me with my surgeon and a couple of my cardiac ICU nurses who saved my life. There isn’t a cardiologist within a mile. Cardiologist are trained in a completely different area of interventional medicine that has nothing to do with thoracic surgery and aortic repair. Peace.