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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 | Sep 15, 2018
In reply to @dougf "I went to minnesota one and spent a week. They checked me over good. No other..." + (show)
@dougf

I went to minnesota one and spent a week. They checked me over good. No other aneurism. Piece of mind was worth it for me.

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May I ask what size was your aneurysm when you went and did you have any symptoms? Did they attribute any of your symptoms to the aneurysm?
Are you saying that you had a week of tests? Only tests I've had for this is CT scan and ultrasound. What other tests did they do?

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dougf | @dougf | Sep 15, 2018

I went to minnesota one and spent a week. They checked me over good. No other aneurism. Piece of mind was worth it for me.

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oldkarl | @oldkarl | Sep 14, 2018

@@randy1950 Randy, going to mayo might depend on which Mayo has the experience to deal with this. Try to contact someone there who can tell you which Mayo has the experience.

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randy1950 | @randy1950 | Sep 14, 2018
In reply to @dollylinda "No... But I'm thinking about doing this. Problem is that I live all the way in..." + (show)
@dollylinda

No... But I'm thinking about doing this. Problem is that I live all the way in Oregon.

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Yes, that is a consideration. I live in the DFW area. I have a cousin from Oklahoma that is in the Mayo now for surgery. I haven't talked to her yet but I am very interested in why she went up there and how it went.

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marylisa | @marylisa | Sep 14, 2018

That is a very good question. Do they know any more than other doctors at major medical centers? I get the sense that no one knows a lot about this disorder. My husband has suggested going to Mayo for a second opinion but I don't know if it would be worth it. I'll look forward to hearing if anyone has been to Mayo for this.

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dollylinda | @dollylinda | Sep 14, 2018
In reply to @randy1950 "Has anyone been to the Mayo Clinic for a second opinion for celiac artery aneurysm?" + (show)
@randy1950

Has anyone been to the Mayo Clinic for a second opinion for celiac artery aneurysm?

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No... But I'm thinking about doing this. Problem is that I live all the way in Oregon.

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randy1950 | @randy1950 | Sep 14, 2018

Has anyone been to the Mayo Clinic for a second opinion for celiac artery aneurysm?

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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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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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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.

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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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