Celiac Artery Aneurysm: Anyone else with same illness?

I wasn't the original respondent on this, but I have Factor 5. When I was diagnosed two years ago I was put on Eliquis. I was also very anemic and having to get iron infusions every few months. I was told I needed to tell any other doctors I went to and to inform my grown children that they may want to be tested. Of course, you know these younger adults "I've never had a problem, so why worry". It has come back big time to bite us in the . . . My youngest daughter was pregnant. Everything was great, no problems. She already had one child with no problems, Factor 5 never even crossed our minds. Two weeks before her due date she went to the doctor, everything good. Three days later she goes into labor. The hospital couldn't find a heartbeat. Our baby grandson was stillborn on August 16, 2023. They found a 7 cm clot in his umbilical cord. As soon as the doctor told us they found a lot of clots, I said Factor 5. They did two tests on her and they both came back positive. My older daughter had also had a baby 4 years ago and no problems. She did a 23&me and did some of the gene testing. She also has it. So I unknowingly passed this on to my two daughters. And my grandson was stillborn because of it. So if you have been told you have it, make sure your children are tested for it too! And if they have it, get your grandkids to be tested. I still need to convince my son to be tested too. I never dreamed something like this could happen, but it did.

Hello @physicaltherapy1 and welcome to Mayo Connect. I'm so glad that you found this forum. It is a great place to share experiences and to find encouragement and support.

From your post I see that you had a spontaneous coronary artery dissection. Can you share more about that? What symptoms were you having? What treatment was done in response to this?

I look forward to hearing more of your journey, so please continue to post as you are able.

I was just diagnosed with fusiform aneurysm of distal celiac artery, 10mm with intimal flap. This is incidental finding on CT. I recently suffered from SCAD (spontaneous coronary artery dissection) and undergoing work up for FMD (fibromuscular dysplasia). Current recommendation is follow scan in 6 months. Im in my 50's and live active life, employed at physical therapist. Im still processing all of this!!

Well I met with two different VS, and both had the same opinion with one being more conservative on the wait and watch moving forward. Neither saw an Aneurism, just the dissection which is a flap within the artery. They even showed me what they see. They looked at all my arteries in the area and around my heart and said they looked brand spanking new so were perplexed as to what caused this. One thinks I may have had it for a while and just never knew. Since I am asymptomatic now, the more conservative approach VS said scan in a month and relook for any changes with it and if no change then redo in 6 mos, then go to annual. The 2nd VS said scan again in 9 mos and compare. Both said I can go back to working out and live normally, so good news there.

Good luck. I’m searching for a similar Cardiovascular surgeon. My PCP just keeps telling me to go see my cardiovascular surgeon. The same one that blew me off!

Thank You for the advice. I will continue to fight those doctors who only give me 10 minutes per visit twice a year. Not acceptable. I’m convinced that certain doctors have a “God complex” and don’t give patients the benefit of a back and forth conversation regarding their concerns.
I will get to the bottom of this even if I pro change doctors and specialists
André

Andy,
Welcome. I too have a 1.6cm aneurysm and dissection of the celiac artery, I just had open repair of my SMA to fix the aneurysm and dissection. It was a 10.5 hour surgery last December(2022). I had/have a great vascular surgeon from Mayo in Rochester MN. The biggest thing I can tell you is to be YOUR biggest advocate. No one knows your body better than you! Had I not pushed and found the surgeon I did, and with Gods help, I would not be here today!! Stand up for yourself and your body and keep looking until you find the Doctor and Team that have your best interest in mind. They have been watching my Celiac aneurysm for several years with not much change. I wish you the best and know that you will get to the bottom of everything.

Dan

Hi Dave from the great Country of Canada. Nice to hear from a fellow Canadian. I’m a transplanted Canadian and a Canadian citizen (and at heart). I was born and raised in Sherbrooke in the Province of Quebec.
I am now a naturalized American citizen. That makes me a dual citizen of both Countries and can vote in the Canadian and American elections due to a Canadian Supreme Court decision.

I know that some Canadians don’t want Americans voting in their elections because I don’t live, work, or pay taxes in Canada. But Canada has determined that if you are born in Canada (like me) You will always be a Canadian. Doesn’t matter where Canadians live, they are still considered Canadians. My family was 5 kids and a set of parents. We moved to New England because my dad worked as a loom fixer for $40.00 a month in Sherbrooke.
Why we moved was strictly economic. His $40.00 a month became $40.00 a week as a loom fixer in the USA.
Anyways, this is not a forum to discuss what country you’re from but it is about aneurysms. My aortic celiac aneurysm, though very rare, is not unheard of in the medical community.
My previous post explains everything but here it is, several months later and I still haven’t seen another VS for a second opinion. My primary care physician said that I should see the same cardiovascular doctor that blew me off. I have no pain but my aneurysm is torn for crying out loud! My Cardiovascular surgeon says he didn’t see anything although he did the past 2 years. He’s lying to me so I’m looking for a second opinion from a “real “ cardiovascular surgeon.

The other scary part is that I had open heart surgery in 2015 and now have to be tested weekly because I am on a blood thinner.
Is being on a blood thinner and having a torn aneurysm a reason for concern? I need to know. Not “see you next year “. So I feel like a walking time bomb. It could be nothing or it could be a large torn aneurysm. I want to know either way. My PCP blew me off and rushed me to the point that I couldn’t even ask questions about my health. 10 minute appointment spending more time with the nurse who took my vitals than time spent with him.
Lately I have noticed that doctor appointments are only 10 minutes of actual “doctor “ time. So he does have to send a referral for insurance requirements.
What am I supposed to do?

Hi everyone, Canadian here and a new member to this exclusive club.

Similar story to many, I had a CT scan for something completely unrelated and it came back saying I have a 17 mm partially calcified celiac artery aneurysm. That was about 3 weeks ago and I’m waiting for my appt to be scheduled with the vascular surgeon.

Like others in this thread, I also get twinges (not painful, just discomfort) just under the rib, usually my left side. They’ve been there a while and didn’t think much of it, but after this diagnosis and reading the experiences of others here, I’m thinking it’s related.

Not sure whether I want the VS to say I need surgery or wait & see, but anxious to find out one way or another. I’ll report back when I know!

I am taking blood pressure and 1 mg aspirin per the ER I went to. Had my physical 2 weeks ago and my BP was normal, but was elevated at the ER. When they conferred with a VS contact the ER Doc had, they suggested it to keep the pressure low to control the size of the aneurism and the aspirin to I believe thin the blood through the dissection to prevent clot. the dissection is at the aneurism like bypassing through the wall.
Went to GP yesterday and he's keeping me on them. He did tell me not to work out until I meet with a VS to prevent any stress on it. I am still waiting for the VS to call as when I called them following the referral from my GP, they were discussing if they would be able to take my case. So needless to say, still up in the air.