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How often do you get scans when there are no significant changes?
Aortic Aneurysms | Last Active: 3 days ago | Replies (23)Comment receiving replies
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.
Replies to "One. Get a second opinion from a thoracic surgeon at a major cardiovascular care center like..."
Your advice is why I am looking into joining a study for the new GORE ASG stent placed endovascularly.
The Aortic Disease Center at Brigham and Women's in Boston placed me with a cardiovascular specialist who isn't a thoracic surgeon, nor is he a member of the ADC team. He doesn't even have aortic aneurysm listed on his clinical interests. I have been with them for over 3 years, and I have never seen a thoracic surgeon for consult.
My aneurysm is at 5 cm currently.
Well, at least, as far as I know. Imaging results thus far:
5/10/21 Echo - 4.7 cm here and on tests with previous providers
10/22/21 MRI - 4.9 cm
12/5/22 MRI Angio - 5.0 cm
1/20/23 MRI Cardiac Non-Stress (not angio) - 5.1 cm with a 3.7 cm dilated pulmonary artery. Should be 2.9-ish. 4 cm would be aneurysm for a woman. No one is concerned. This was done because it looked like I might have left to right shunting. I didn't.
12/11/23 MRI Angio - 5.0 cm
We skipped 2024 entirely. I don't get scanned again until this August. I think my doctor is unconcerned because it's been stable since 10/22/21. I think 5 cm makes it a concern regardless.
I just think my care has been kind of haphazard. No surgical consult. No scan for over a year and a half. I have all kinds of weird labs indicating some sort of autoimmune/autoinflammatory condition, not to mention the symptoms, the dry eye, the glaucoma/visual field defects, the skin condition, the hearing loss, my genetic results... I'm 55!!! And it just really goes on and on. I've started taking more regular pictures to document what is happening. The two top contenders absolutely intersect with vasculitis that might result in an aortic aneurysm. Can't get a BWH rheumatologist to take it seriously.
So I am going to take those two things elsewhere. Well, everything elsewhere, really. It's very frustrating and scary.
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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.