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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

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finled | @finled | Dec 22, 2020
In reply to @onemind711 "Hi, i was diagnosed with a 2cm celiac artery aneurysm 4 years ago. Im 57. It..." + (show)
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Hi, i was diagnosed with a 2cm celiac artery aneurysm 4 years ago. Im 57.

It is definately hard to find any recent research. I am going in this morning for my biannual CT angiogram, hoping that it hasnt grown. I was so glad to find this board because of its rarity and how its presence seems to linger in the back of my mind. I live in Utah so i had to go to Mayo once it was discovered. Originally it was for surgery because 2cm is the size which intervention is needed. They then said that it was only 1.4 cm wide and 2cm long, so i went on the watch and weight program.

Its not a diagnosis that sits well. They say that since there is not that many cases the data of rupture is just not available, but that the science behind the wall pressure and such makes watching less of a risk.

I dont get pain that often, but when i do its always a uneasy feeling and reminder when you know that the mortality rate if ruptured is high.

So, i guess we are just a special group of humans that must take life as a precious gift regularly. And do our follow-up as needed. Like i said, its been over 4 years and my lil guy hasnt grown at all, so maybe it never will and ill live to be a crotchety old man.

Warm regards,
Chris McArdle

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Thanks for adding that info Chris. I am 63 yers old and last Wednesday the Docs just found a 1,4cm celiac artery aneurysm on a Cat scan. i only know this because I have access via Mychart to my records and i read the results of the Scans. pretty bummed that after 5 days, i have not received a call. It is almost 2021 now and there still is little about this out there.

Hope you are doing well.

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asdf | @asdf | Aug 7, 2020

Oh Jen, I am really sorry to hear about a new aneurysm. Think positively, if you can. 🙄 At least it's small. How did they discover it? I'm coming up for my first tests for measuring growth since my CA was found last August. Then, it was 1.2 cm. I'm in Florida, so I understand your concern about no hospital beds. Please keep us posted and know that our best thoughts are sent your way. COVID free so far, too! 🤞Mary

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Jen | @jurney01 | Aug 7, 2020

I wanted to thank everyone for their stories. i started this blog back when i was diagnosed with the CAA. I was so afraid there were no others with this. I appreciate people being able to open up and tell their stories. I wanted to follow-up on mine from 2016. I continued being monitored by surgeon after embolization with Cat Scan of abdomen yearly. A few days ago I became dizzy. I went to ER, hoping not to be exposed to COVID. Instead I was told I have another aneurysm on a blood vessel. Its located on back of neck right side. The size is .5 by .3 centimeter. Now I am freaking out. Am i a walking time bomb??? The hospital has no beds. So now Im waiting to be seen by neurologists. Keep you all updated. Oh yeah COVID
Free!!!

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Amanda Burnett | @amandaa | Jul 7, 2020

Hi @tjelderd and welcome to Mayo Clinic Connect. Have you been diagnosed with a Celiac Artery Aneurysm? Would you like to share your experience?

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tjelderd | @tjelderd | Jul 6, 2020
In reply to @dollylinda "I was diagnosed with a Celiac artery aneurysm last October. Same size as yours. I did..." + (show)
Profile picture for dollylinda @dollylinda

I was diagnosed with a Celiac artery aneurysm last October. Same size as yours. I did go to a vascular surgeon and he is doing a watch and see approach. I went back 6 months later and they did an abdominal ultrasound. My aneurysm was 1cm larger but he said that most likely the difference was do to who was taking the measurement as 1cm is extremely small.
Anyway... I too was very frightened but I decided that I may have had this for years without knowing so I relaxed knowing that this is small, that whatever is going to happen will happen and that most likely everything is going to be fine like everything in life.
I still have pain/discomfort on my right side that everyone dismisses. In my case, I will go back in one year and get another abdominal ultrasound.
My suggestion is to try to relax as that is the best thing for your body. Easier said than done but now that I've known about this for 10 months I don't think about it much.
I think the only way they know that it's getting growing is by getting those abdominal ultrasounds.
I'm curious if they think your pain is from the aneurysm?
When you say your chest had pain, are you saying your rib area (that's where mine hurts... Under my ribs ...Like I'm getting squeezed)
I have no idea how dangerous the wait and see approach is but it seems rather standard from what I gather. I was told they don't want to do anything unless it is 2cm or larger. Let me know what your surgeon says as I too am very curious.
Also let me know if they say the pain is related.
Best wishes!

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Do they say they would put a stint in?

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susangourdlady | @susangourdlady | Apr 6, 2020

Factor V Leiden increases your chances of developing blood clots. That is why.

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Ted | @tvickey | Apr 6, 2020
In reply to @colleenyoung "Indeed, @susangourdlady. Would you mind repeating your experience with Factor V Leiden?" + (show)
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Indeed, @susangourdlady. Would you mind repeating your experience with Factor V Leiden?

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My doctor told me that whenever I have surgery that I must always tell the doctors about the Factor 5 - don't know why it is important but I tell them.

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Ted | @tvickey | Apr 6, 2020
In reply to @astaingegerdm "@tvickey Welcome to Mayo Clinic Connect and thank you for telling your story of celiac artery..." + (show)
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@tvickey Welcome to Mayo Clinic Connect and thank you for telling your story of celiac artery aneurysm. That explanation by your doctor comparing the dissection to wallpaper is the best I have heard! Did you have surgery then?
I had MALS - median arcuate ligament syndrome- the celiac artery was compressed by a ligament. I’m sure the symptoms are similar. Do you still have your spleen?

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No surgery. Was on meds for 6 months and follow up. Second visit showed a smaller dissection. No idea how that happened.

My doc is awesome. I switched health insurance, he was out of network. I was prepared to pay for my annual follow up visit out of pocket (he is good and expensive).

HE WAIVED HIS FEE!

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Colleen Young, Connect Director | @colleenyoung | Apr 6, 2020
In reply to @susangourdlady "It might have been me." + (show)
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It might have been me.

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

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susangourdlady | @susangourdlady | Apr 6, 2020
In reply to @tvickey "I noticed someone else here suggested they were Factor V Leiden (Factor 5 Leiden). Anyone else..." + (show)
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I noticed someone else here suggested they were Factor V Leiden (Factor 5 Leiden). Anyone else told this?

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It might have been me.

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