Celiac Artery Aneurysm: Anyone else with same illness?

Posted by Jen @jurney01, Jul 23, 2016

Hello! I was recently diagnosis with a celiac artery aneurysm in June 2016. I underwent a embolization w/ coils procedure since the aneurysm had grown while in the hospital. I was trying to reach out to someone who suffered the same illness but have not been lucky. I would like to locate someone with my same illness. I would appreciate any help. Thank you

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

@briandem

Thanks for your reply Andytheman! So you have had this with dissection for 2 years? Have you gotten a second opinion? It's tough because of the double rarity of this aneurysm + dissection, means less doctors with enough knowledge an experience, so finding the right one that will actually put themselves in your position. Sorry you are going through that, I have been panicking for just a couple days, so can not imagine. I did et a call back from the referral people who found a VS that will see me today, so i will post after that happens.

Jump to this post

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!

REPLY

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.

REPLY

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!!

REPLY
@physicaltherapy1

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!!

Jump to this post

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.

REPLY
@colleenyoung

Indeed, @susangourdlady. Would you mind repeating your experience with Factor V Leiden?

Jump to this post

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.

REPLY

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.

REPLY
@codonpatrick

Randy

Thanks for sending the article. I misstated as mine is 1.5 CM. just slightly larger than yours. I just had a CTA last week and my doctor felt that there was nothing to be concerned about as it has barely grown since it was discovered six years ago. He felt that another contrast scan in three years would be sufficient with a non contrast scan in a year.

Dennis

Jump to this post

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

REPLY
@kkboco

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

Jump to this post

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

REPLY

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.

REPLY
@kkboco

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.

Jump to this post

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 !

REPLY
Please sign in or register to post a reply.