Aortic Aneurysms – Introduce yourself & meet others

That’s a shame to hear, but make sure they’re still being vigilant about checking it

I had a 4cm AAA they found in August in an MRI for my back. Said not to worry..Had pain last Sunday morning and went to ER, Ran a CT scan and they found it had enlarged to 4.75 and was tearing apart….so my wife and five daughters had to choose between EVARS or full open.
They chose full open…best decision of my life. They found an other tears once inside…the docs here at UVA saved my life….yelp still very sore and it’s a hard road back…but at least I have the opportunity.

My point is, keep checking it, and don’t wait to fix it!
God bless you and good luck

I had an evar procedue for my swotting 5 years ago. Doc says sac in increasing in size

Don’t ask me why the word “yang” is in my post. My keyboard adds or makes up words that are misspelled or grammatically incorrect. I have to proofread my posts all the time. It’s a Gmail querty keyboard that self corrects but it makes me look like a 4th grader. Same with Gramarly . Does anyone know of a good keyboard? Anyways I’m going off topic. Sorry.

I have 2 cardiovascular doctors. One calls himself a cardiologist and the other calls himself cardiovascular surgeon. Would a visit to the regular cardiologist help? He belongs to a group that go by the name of “cardiovascular group of New England “. Does that mean he’s more than just a regular cardiologist? I’m thinking of calling his practice and ask him if he is familiar with the cardiovascular system?
I had a St Jude mechanical aortic valve replacement done in 2012 because my cardiologist at the time heard a heart murmur. My aortic valve was leaking and that wasn’t a good sign.
So I went for open heart surgery and they replaced it with a mechanical valve. But now I’m on blood thinners for life. Then there was an aortic aneurysm and eventually it developed a tear and it’s a little over a 3cm as of 2 years ago. Does that mean that even though it has a tear (abdominal aneurysm) but may only be a 3 cm if it’s still the same measurement. I don’t know if it’s grown or not and that bothers me especially when I get a little pain sometimes on my lower left side of my abdomen. I don’t know if I’m wondering for nothing. I’ve also heard it by the name of celiac aneurysm of the celiac branch vessel ( very rare). If it’s in that area does it mean it’s inoperable? Bothers me all the time. Not because it’s painful but it’s an area (and torn) that seems to require extensive surgery. Maybe I’m wondering for nothing.

My insurance company gave me a list of about 20 names to pick from in regards to getting a second opinion. They would pay Yang doctor on the list. I have the list but I’ve yet to pick one so far as I’m not sure a second opinion would do anything. I’ve gotten lackadaisical about the whole thing.

Does your insurance allow you to see another specialist? No matter what, I would get another opinion. This sounds crazy and the doctor sounds reckless. Even if his opinion is correct, the way he answered your questions is not correct.
Good luck! Keep us posted.

Thank you, both. I know one of the primary recommendations will be to lose weight and get in better shape with more walking, balance, and stretching activities. So I am focusing on that for now.

It is just so frustrating to think that there is obviously some sort of inflammation going on, in addition to my calcium metabolism abnormalities which are concerning with CV conditions; and I can't get anyone to figure out what is going on. I've got to think that calming inflammation is probably good for aortic aneurysms.

I finally got my whole genome sequenced and got a report of my most concerning genetic variants. Two conditions popped pretty hot: Behcet's syndrome and ankylosing spondylitis. Behcet's is associated with vasculitis, and a few other more minor things I have going on: eye inflammation, mouth sores, joint pain in my knees and ankles, etc. I never would have thought of Behcet's specifically, but I was aware that three separate rheumatologists had failed to follow standard practice in investigating elevated inflammation in a patient with an aortic aneurysm. One was even in the same hospital as my cardiovascular surgeon. That isn't exactly reassuring.

The hospital advertises that they have these interdisciplinary teams that treat your aneurysm. They don't. They watch and wait and until surgery is necessary. they did send me to a geneticist who checked for a bunch of things I clearly do not have: Marfan's, Loeys-Dietz, Adams Oliver, etc. Part of the problem is that they are relying on a genetic testing company, Invitae, to be their geneticists. They offer plug and play panels, which are limited in scope. So I got my whole genome.

Y'all are right. I probably need to shop around some more. I like my cardiovascular surgeon. He seems to be following standard of care, based on what I've read. I'll know more when I discuss specifics with him on Thursday. However, the people backing him in other departments at the hospital leave a lot to be desired.

Hi larak,
So sorry to hear about your medical conditions.
You do have a lot going on! Hopefully you can find ONE trusted medical professional that can put into English what your “next steps” in order, for what your care should be. Seems like all of us need a patient advocate to understand and make sense of “their”world. Hopefully you’ll find that one person. Wish you the best of luck! csd

Ask your doctor to show you where it is located. Ascending means it is the part of the aorta that your blood first enters the heart as it goes up to the arch. Mine was on the arch. Listen to your doctors. My was found accidentally at a measurement of 4cm. No way to tell how long it was there. A year after I was cleared of any problems with my heart and told to follow up yearly I ended up with an emergency double aortic dissection. I was in perfect health other than the aneurism. I ended up with 3 areas that were patched (one at the valve, the one approaching the arch and one descending after the arch leading to my legs) and one stent. The surgery was a welcome event considering I’m still here. The surgeons told my husband I could be considered a miracal. Most people don’t make it to the Er and if they do they don’t make it out. Think positive. Start walking (important in aftercare) and trust your medical team. I’m sorry you had a bad experience. Find someone you trust. Tell them about your experience but you need to have confidence in your team! The alternative here is not good. Good luck on your journey.

I'm Rich
Been checking yearly on an abdominal aneurism and now it is at 5 and I' m getting a stent this wednesday. I already had two stents put in a few years back so I'm familiar with the groin surgery. This time there will be surgery on both sides of my groin. I'm 79 and wondering just how safe this procedure is. Hope it helps me live a few more years. Any information on others results is appreciated.

54F in Greater Boston. Married 32 years to the same man. We have 2 kids. The eldest is 22M and in his final year toward a B.S. in Industrial Engineering. He struglles with 2 LDs & ADHD-PI. (I have ADHD-PI as well; so does my dad.) Our youngest, 18F, has profound autism & moderate intellectual disability.

VERY out of shape and working on my diet (primarily) and light exercise. I'm limited to 20 lbs per arm, but no HR/BP limit? Weird.

I have an ascending aortic aneurysm, found on nuclear stress test in February of 2021. It was 4.7 cm. It's now a 5.1 cm.

Seeing my CV surgeon 10/5/23 to get more specifics on the surgery: Where, specifically, is this aneurysm? Are branching arteries involved? How does he feel about the revised guideline to 5 cm being surgical intervention point, down from 5.5 cm? How many of these surgeries has he done? Who will be working with him?

There will be an emphatic declaration on my part that I don't want students even in the operating room, let alone assisting in my surgery. I'm putting this in writing several places. I don't give a flying fart in space if they're a teaching hospital.

Background: I had a disastrous surgery in December 2018 at a teaching hospital in Maine that left me with a surgical site infection, open wound care for weeks, and 3 suture site hernias still to be repaired. I've done my tour of duty. No more students practicing on my body.

I have a million inflammation markers that are just vague enough that no specialist will deal with them: ANA (speckled, 1:1280), C3, total complements, IL-2R, IL-6, IL-10, chromogranin A, etc.

I'm worried about rheumatological conditions that cause vasculitis, but can't get a rheumatologist to engage based on the markers I have. Too vague.

I have recurring hyperparathyroidism. No one wants to deal with that, either.

I'm just a medical mess and need to start taking better care of myself, despite the aneurysm.