Aortic Aneurysms – Introduce yourself & meet others

My relationship with my primary care physician has been reduced to a face to face appointment every 3 months. I haven’t had a proper full examination visit in years. He doesn’t do a complete physical.
I went to an ER a while back for Coumadin poisoning. My blood thinner had increased my normally 2.0 - 3.5 all the way off the chart. They said it was at 12 instead.
Could have bled to death. A CT scan was done and while laying on an exam bed he comes up to me and says “ we are going to transfer you to a trauma hospital for emergency surgery”

I asked him how come and not only was I bleeding internally from the high Coumadin level. I also had an aortic abdominal aneurysm and it was torn. The trauma hospital said that they were thinking of taking care of my aneurysm but “ it isn’t bleeding right now but you will need to come back to the hospital but for now since it isn’t bleeding the “team” felt that "you could be discharged because it wasn’t bleeding at the moment so you don’t need emergency surgery right now"
Upon being discharged he said “ see your cardiovascular surgeon ( I happen to have one) ASAP”

I called my surgeon when I got home and he told me that he wouldn’t see me unless the trauma hospital said it was an emergency!!
I told him about the asap instructions and he said “oh all hospitals say that”

I finally convinced him to see me in 2 days. I met his rude and disrespectful secretary and she said “where’s your mask?” before anything else. (Covid protocol)
I had forgotten my Mask at home because I was thinking about my potential surgery.

His aid did a sonogram of the abdominal area and said “all set “
I was led to the exam room and waited. Finally he swings the door open and says “I didn’t see anything”
I said that for 3 years you have been telling me that my aneurysm was ok and “now you’re saying you didn’t see anything?"
2 different hospitals saw it and now you’re saying you didn’t see it?”
He came in rolling his eyes up and made light of it and left. On the way out I said that “could it burst?” And he said “it could but we have ways to take care of that “
I’m thinking supposed it burst while walking in a park? It needs immediate attention because it can quickly become fatal!! Especially when my blood is on a thinner.
He talked over me, he seemed annoyed, he rolled his eyes back and said “ see you next year!” And left the room. No time to discuss my concerns. He was with me for 5 minutes. I spent more time getting my vitals taken.
I told my PCP later and he told me to see my cardiovascular surgeon. ( the same doctor who blew me off because I screwed up his appointment schedule). I called my cardiologist instead because he works in a "cardiovascular of New England” I left 3 voicemails. Never returned my calls. My PCP experience was awful! 10 minute visit. Spent more time with the nurse taking my vitals. He was just like my cardiovascular surgeon. Neither one helped me. The surgeon was annoyed and my pcp saw me face to face and basically did a quick talking to me and “ see you in 3 months “ and left. Now what?

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.