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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@tvickey

I was diagnosed with this in 2016. My doctor’s notes suggest:

Better redemonstration and confirmation of 2.1 cm fusiform aneurysmal dilatation of the celiac artery. Associated occlusive dissection with thrombus formation likely within the false lumen involving the celiac artery, proximal common hepatic artery, and origin splenic artery. Etiology of this is unclear. This can be seen in association with underlying vasculitis. No other findings to suggest vasculitis as far as visualized.

I presented with similar symptoms, severe pain in low back with nausea. From onsite of initial pain (while sitting in my barber’s chair hoping he would finish quick because I needed to vomit) until the time I ended up in the ER was 90 minutes. Was on a Friday night. ER doctor sent me home, couldn’t find any reason for the pain. I suffered thought the Memorial Day week and was first in line to see my primary care doctor on Tuesday. He immediately sent me to a general surgeon who admitted me to the hospital (same one I had gone to on the Friday).

I was lucky that the general surgeon was a very experienced doctor with 40+ years of medical practice. He had seen this before and knew what to test and sent me to the vascular surgeon who explained to me “it is like you have wallpaper in the walls of your arteries. For some reason, the wallpaper is peeling from the top and blood is getting behind the wallpaper causing the issue”. Great explanation. The pain was explained as my spleen dying from lack of blood flow. Don’t know if that is a common symptom.

Was in hospital for four days, started on blood thinners (stayed on for 6 months) and re-scanned with no issues. Follow up visit in 2019, no issues.

If I can be of help to anyone here, please let me know.

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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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@tvickey

I was diagnosed with this in 2016. My doctor’s notes suggest:

Better redemonstration and confirmation of 2.1 cm fusiform aneurysmal dilatation of the celiac artery. Associated occlusive dissection with thrombus formation likely within the false lumen involving the celiac artery, proximal common hepatic artery, and origin splenic artery. Etiology of this is unclear. This can be seen in association with underlying vasculitis. No other findings to suggest vasculitis as far as visualized.

I presented with similar symptoms, severe pain in low back with nausea. From onsite of initial pain (while sitting in my barber’s chair hoping he would finish quick because I needed to vomit) until the time I ended up in the ER was 90 minutes. Was on a Friday night. ER doctor sent me home, couldn’t find any reason for the pain. I suffered thought the Memorial Day week and was first in line to see my primary care doctor on Tuesday. He immediately sent me to a general surgeon who admitted me to the hospital (same one I had gone to on the Friday).

I was lucky that the general surgeon was a very experienced doctor with 40+ years of medical practice. He had seen this before and knew what to test and sent me to the vascular surgeon who explained to me “it is like you have wallpaper in the walls of your arteries. For some reason, the wallpaper is peeling from the top and blood is getting behind the wallpaper causing the issue”. Great explanation. The pain was explained as my spleen dying from lack of blood flow. Don’t know if that is a common symptom.

Was in hospital for four days, started on blood thinners (stayed on for 6 months) and re-scanned with no issues. Follow up visit in 2019, no issues.

If I can be of help to anyone here, please let me know.

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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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@tvickey

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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In reply to @susangourdlady "It might have been me." + (show)
@susangourdlady

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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@astaingegerdm

@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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@colleenyoung

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

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@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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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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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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