Celiac Artery Aneurysm: Anyone else with same illness?

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 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.

All, I have been reading and finding peace on this site since my husband's incidental and asymptomatic finding of a 1.2cm CAA one year ago. He is having his annual ultrasound on Thursday. I am curious -- for those of you who have been on "watch and wait" (some dating back to 2016), have any of you had any change in size from your original diagnosis? If so, how much change, and are you still on watch and wait? Thank you in advance... I am nervous for Thursday. Sending healing energy to everyone on this string... PS - I think there are many like me who have been quietly reading this community... point being, diagnosis seems to be more and common... take care all.

Hi Dennis, thank you for your posts. Curious if your CAA size is still the same? Thank you.

My CAA was first discovered in a CT scan performed in 2014. It was approximately 1.5 CM at that time. About a year ago following one of my periodic scans the CAA hadn't changed, and my doctor told me that it was unlikely to grow and I would probably never have to surgically repair it. I had another scan performed a few weeks ago and for the first time the CAA expanded to 1.9cm. My doctor ordered a more extensive scan with contrast which is scheduled for February.

Based on conversations with my doctor the risk/ reward for having surgery increases at the 1.8 to 2.0 cm size and the risk of rupture at 2.0cm indicates the need for surgery. Now that I am at the cusp of having to take remedial action, I would like to weigh various options. It is my understanding that the surgery is extensive, and members of this group have posted that it lasts ten hours. I think that embolization is a much less invasive option and i would like to do some research and invite comments from others in this group as to their knowledge? experience with embolization to repair a CAA. Due to the rarity of this condition, it would also be helpful to know of vascular surgeons in various locations where both the traditional surgery and embolizations have been performed.

Regards

Dennis

My heart goes out to you, Dennis. Thank you for taking the time to respond in light of all you are processing.

My husband is being monitored by Dr. Frances Caputo at Cleveland Clinic. It is my understanding that both open and endovascular options are offered at the Clinic.

I will be thinking of you over the coming weeks and months. Please keep us posted on how you are doing.

Thank you so much . Also, thanks for sharing the information regarding your husband’s doctors.

Let’s stay in touch and my best wishes to your husband !

I just read this post. I hope that everything went well. Do You have any updates to share?

The information you gave is wrong. Nonruptured Celiac artery aneurysms are operated on when they reach 2.0 cm — much much smaller than the 5.0 cm size you incorrectly described (according to National protocols established by vascular surgeons).

So you’re saying that my 3cm celiac torn aneurysm that measured at 3cm a year ago should have been repaired already?
This does seem to make sense because last year it was at 3cm and nothing about the fact that it was torn was mentioned then. This summer I had to go to the ER for Coumadin poisoning and they took a cat scan and found the torn aneurysm and that hospital said they were going to have to transfer me to a trauma hospital for emergency surgery!

I asked why and the cardiovascular surgeon told me about my aneurysm so they shipped me off to the trauma hospital and when I got there their cardiovascular surgeon said that he too seen it but said “it’s not bleeding at this time so we feel you can safely be discharged. But you’ll have to come back at another time to get it repaired and said that I should see my own cardiovascular surgeon ASAP so I called to make an appointment with him and he said he wouldn’t see me unless the hospital said it was an emergency!

He was clearly annoyed and rushed to get to his other patients who had made appointment.

I said the hospital said to see you ASAP. He said that “all hospitals say that “
According to him the radiologist took a sonogram of the area and didn’t see anything. What? 2 cardiovascular surgeons seen it and he’s saying he didn’t see it. I was diagnosed by this surgeon for 2 years for the aneurysm and now he’s saying he didn’t see it?
What about those 2 other years? He said I had a 3 cm the last time I seen him a year ago. I asked him if it could burst and he said that it could “but we have ways to deal with that “
Do I have to wait until it bursts? Seeing that a burst aneurysm is usually fatal that wouldn’t give me much time between the burst and the hospital ER.
Then he started to dash for the exam room door and said “see you next year!” He didn’t answer my questions except for one. Now I’m walking around not knowing if I could die that day.
I forgot to ask him about the size of the aneurysm and the size of the tear.
Maybe it’s nothing but I would like to know the size.