Aortic Aneurysms – Introduce yourself & meet others

I went to an ER for something entirely different. As is usually done when going to an ER they normally do a CTscan. Long story short I was found to have an abdominal aneurysm at 3 cm.

No big deal I thought until the ER doctor came to the exam room and said “we are going to transfer you to a trauma hospital for emergency surgery”.
The reason was not the size but it is torn.
I was transferred to the trauma center and the cardiovascular surgeon said that they can acknowledge that I have one but “ you will have to come back later but it presently isn’t bleeding so we feel that you are stable enough to be discharged “
“Make sure to go to your cardiovascular surgeon ASAP.

I called him and he said that "we have an appointment coming up in 3 months and we’ll look at it then “
“I don’t think I need to see you now. I told him that the hospital surgeon wanted me to see him ASAP. He said that he wasn’t going to see me “until our upcoming appointment.” (3 months away) I told him everything and he agreed to see me the next day saying “ oh hospitals always say ASAP.”
We met the next day and he appeared annoyed because he already had appointments to get to that day. He was in a rush and practically laughed it off. I asked him as he was rushing out of the exam room if it could burst. He said “it could but we have ways to deal with that “ When? when I collapse to the ground?
Isn’t it too late then? Most people would think that I’m having a heart attack and perform a cardiac arrest procedure but it would be the wrong thing and I could die as a ruptured aortic aneurysm is usually fatal.
As he’s rushing out the door he said “see you next year” what?? He said that the echo didn’t show anything and that “I didn’t see anything “. Excuse me but 2 cardiovascular surgeons said I had one torn aneurysm and that I promptly see my cardiovascular surgeon and you say there is nothing you can see?”
Why have you been seeing me once a year if you didn’t see anything?” He didn’t say anything but walked out. Now what? Am I a ticking time bomb? Time for a second opinion?

I just found out this week I have a 4cm abdominal aortic aneurysm. Going to a CT angiogram V2 in a couple weeks. Very surprised, overall very healthy, just got back from 85 mile walk in UK. I had an MRI done for Osteoarthritis in my lower back three weeks ago and that’s when they found it. Very stressed and worried

So sorry to hear that. It also seems to us, where we live, that if we had big health issues that would come up a few years ago, we could get in fairly quickly..now it’s “see you in 3 months and you a different specialist for that..let me refer you”…so another month..That’s very stressful when you have something serious.. I guess keep calling him OR someone else until they see you. Now more than ever seems like you have to be an advocate for yourself. Good Luck!

Unfortunately, such actions like requesting medical care from your PCP for something that doesn’t seem right result in “I’ll see you in 3 months “

The only quick solution is to present yourself to an emergency room physician.
This is usually much more expensive than seeing your doctor.

Insurance companies pay for the high price of emergency room visits. You would think that having to clog up an emergency department would be discouraged by the insurance companies.

It appears that going to an emergency room is much more expensive to the insurance companies.

My recent visit cost $ 4,000 for a minor issue and my insurance company paid it without batting an eye. My primary care physician has a portal and all I have to do is call him with my symptoms.
His nurse will call me back within 4 hours. There are no fees.
The Mayo Clinic has started charging for certain treatments or services rendered through a portal. This might be coming nationwide but so far I haven’t had to pay.

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.

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.

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.

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

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.

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.