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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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dollylinda | @dollylinda | Aug 27, 2018
In reply to @janet26 "Hello .I see most of these posts are from a couple years ago. I hope someone..." + (show)
@janet26

Hello .I see most of these posts are from a couple years ago. I hope someone is still out there. I have just been diagnosed with a 1.2. Celiac artery aneurysm. I went in with upper chest pain and the Dr. ordered a Ct scan of chest. Lungs were fine but incidentally found this aneurysm along with a dissection of the Sma. Reading a little here and there I feel quite frightened by all this. I see a vascular surgeon for a consult today. I think according to my GP, he is going to recommend only observing it. I wonder how you know if it is growing ,how dangerous is the wait and see approach?

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I have pretty bad pain under my ribs. But mine is chronic so it's usually there and it just depends on how bad it is. My favorite solution is that I lie on a heat pad pillow that I put in the microwave. Sometimes I take cymbalta which helps but can make me feel sick to my stomach so I only take that if it's really bad. I end up lying down more than I'd like cause sitting really hurts and after a while so does standing. But I think it's important to walk to stay flexible. It's a viscous cycle.. too sedentary…gain weight… Ease pain ( do not like). It's all a payoff.
Not much else to do.

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dollylinda | @dollylinda | Aug 27, 2018
In reply to @ernestine "I am having digestive problems because of my aneurysm.....any help for that?" + (show)
@ernestine

I am having digestive problems because of my aneurysm…..any help for that?

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My ab muscles hurt too. What hurts on me a lot is the area at my waist!

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onemind711 | @onemind711 | Aug 27, 2018

Ya, sometimes mine does too. But not often. They told me the pain will be too intense if it burst, no way I wouldn't know. I told the doc, I was scared every time i had an unusual pain, i was affraid it was bursting.

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2 replies
dollylinda | @dollylinda | Aug 27, 2018
In reply to @onemind711 "Ya, sometimes mine does too. But not often. They told me the pain will be too..." + (show)
@onemind711

Ya, sometimes mine does too. But not often. They told me the pain will be too intense if it burst, no way I wouldn't know. I told the doc, I was scared every time i had an unusual pain, i was affraid it was bursting.

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That's what they told me too. My pain is never intense just deep, aching, crampy and uncomfortable!
Best of wishes. It's a very scary condition but after a while I got use to knowing I have it so I'm not freaked out, I'm just uncomfortable!

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onemind711 | @onemind711 | Aug 27, 2018
In reply to @onemind711 "Ya, sometimes mine does too. But not often. They told me the pain will be too..." + (show)
@onemind711

Ya, sometimes mine does too. But not often. They told me the pain will be too intense if it burst, no way I wouldn't know. I told the doc, I was scared every time i had an unusual pain, i was affraid it was bursting.

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I agree, I even forget about it. Then I get a pain, and Im like could this be it?…lol

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randy1950 | @randy1950 | Sep 5, 2018
In reply to @colleenyoung "Jen, like @hopeful33250 I too would like to get to know about you. I didn't find..." + (show)
@colleenyoung

Jen, like @hopeful33250 I too would like to get to know about you. I didn’t find another Connect member with a diagnosis of celiac artery aneurysm. As you point out, it is very rare. But given that the celiac artery is the first major branch of the abdominal aorta, I thought you might appreciate the introduction to a few members who have recently been talking about living with an abdominal aortic aneurysm. Please let me introduce you to @janetpomponio @kdh1 @playsdixie @elsinann and @lynnkay1956. You may also wish to read this older and ongoing discussion http://mayocl.in/1WX0ypo

Jen, are you a candidate for surgery?

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Not sure where to jump in here. I was diagnosed with a celiac artery aneurysm also. 09/04/018, Mine is 1.25CM. Will be checking it every six months. My MD says surgery would be considered at 1.5CM. Mine seems small compared to others on here. I have low grade lower abdomen pain that may be the aneurysm, not sure. I thought it was a hernia and that's how they found the aneurysm. I will follow. Thanks, Randy.

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dollylinda | @dollylinda | Sep 5, 2018

Very similar size to mine. I was diagnosed almost a year ago and also on watch and see. I have fairly consistent abdominal/rib pain. However, my doctor didn't think it was related and I don't understand that. Since I see you say it might or might not be related, I'm curious if that's what your doctor said?
It makes me not trust my vascular surgeon.
What do you do for your pain of I may ask? Nothing seems to help mine.

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1 reply
onemind711 | @onemind711 | Sep 5, 2018
In reply to @onemind711 "Hi, i was diagnosed with a 2cm celiac artery aneurysm 4 years ago. Im 57. It..." + (show)
@onemind711

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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Correction…not biannually, rather biennial

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helenannmarie55 | @helenannmarie55 | Sep 5, 2018
In reply to @kariulrich "I am wondering if anyone diagnosed with celiac artery aneurysm have an underlying disease?" + (show)
@kariulrich

I am wondering if anyone diagnosed with celiac artery aneurysm have an underlying disease?

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In 2008 a ct showed what several radiologists though was an aneurism in my stomach. One doctor didn’t agree it was an aneurism so he did an angigram and then I was diagnosed with median accurate ligament disease. The doctors would not touch it because it was rare. Last years I had a blocked small intestine, and then was diagnosed with gastroparesis. It is one thing after another with such pain with eating. I am very frustrated that no one will offer to surgically release this artery. Maybe when the appendage attached to this artery bursts someone will do something unless I am gone. It is so frustrating because no one understands.

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2 replies
randy1950 | @randy1950 | Sep 5, 2018
In reply to @dollylinda "Very similar size to mine. I was diagnosed almost a year ago and also on watch..." + (show)
@dollylinda

Very similar size to mine. I was diagnosed almost a year ago and also on watch and see. I have fairly consistent abdominal/rib pain. However, my doctor didn't think it was related and I don't understand that. Since I see you say it might or might not be related, I'm curious if that's what your doctor said?
It makes me not trust my vascular surgeon.
What do you do for your pain of I may ask? Nothing seems to help mine.

Jump to this post

The vascular surgeon said there may be pain in the lower abdomen. My primary doctor says there should be no pain from the aneurysm. However, we can't a reason for the pain. Still kind of a mystery. They were looking for a hernia when they found the aneurysm. No hernia. Nothing seems to help with the pain. It is mostly a low grade pain that flares up on occasion, but nothing unbearable yet.

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1 reply
dollylinda | @dollylinda | Sep 5, 2018
In reply to @helenannmarie55 "In 2008 a ct showed what several radiologists though was an aneurism in my stomach. One..." + (show)
@helenannmarie55

In 2008 a ct showed what several radiologists though was an aneurism in my stomach. One doctor didn’t agree it was an aneurism so he did an angigram and then I was diagnosed with median accurate ligament disease. The doctors would not touch it because it was rare. Last years I had a blocked small intestine, and then was diagnosed with gastroparesis. It is one thing after another with such pain with eating. I am very frustrated that no one will offer to surgically release this artery. Maybe when the appendage attached to this artery bursts someone will do something unless I am gone. It is so frustrating because no one understands.

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I get it. I feel so frustrated also. I just heard about that liagment disease. I feel that I cannot get anyone to take my condition seriously which is ridiculous when it's so serious. Since it's rare and perhaps they don't take know much about it, then send me out of state so I get an accurate diagnosis.
Was your pain chronic, deep and feeling as though you are being squeezed? Mine is that way and also under my ribs on the right side and deep on the side of my right waist.
I hope you get some relief.
Have you thought of calling to get an appointment with Mayo or another big hospital/clinic?
Sometimes I think of doing this.
Best of wishes on your journey to health!

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dollylinda | @dollylinda | Sep 5, 2018
In reply to @randy1950 "The vascular surgeon said there may be pain in the lower abdomen. My primary doctor says..." + (show)
@randy1950

The vascular surgeon said there may be pain in the lower abdomen. My primary doctor says there should be no pain from the aneurysm. However, we can't a reason for the pain. Still kind of a mystery. They were looking for a hernia when they found the aneurysm. No hernia. Nothing seems to help with the pain. It is mostly a low grade pain that flares up on occasion, but nothing unbearable yet.

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Thank you! That really helps me. I appreciate your reply.

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