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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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Kespectrum | @kespectrum | Jun 12, 2017

Am looking forward to the conversation with my surgeon - hope he says some similar like infinitesimal. Have you ever experienced any gut issues before? Hope all goes well for your prognosis.
Karen

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dougf | @dougf | Jun 12, 2017

I go back this week for my follow up CT 3 months after original diagnosis. In the meantime I talked with the vascular surgeon who told me my chances of having it burst are infinitesimal. So I'm glad mine is small and as long as it doesn't grow I should be good to go. We will see after this weeks CT.

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Kespectrum | @kespectrum | Jun 12, 2017
In reply to @dougf "Jen, You and I are both very rare. I was just diagnosed with a celiac artery..." + (show)
Profile picture for dougf @dougf

Jen,
You and I are both very rare. I was just diagnosed with a celiac artery Aneurism last week. I Like you was experiencing severe abdominal pain. I was absolutely not expecting this news after CT scan. Like you I was quickly transferred to a hospital that had vascular surgeons on staff. I'm now released with low grade pain with a wait and see approach. In two weeks they are repeating the CT scan to monitor it. The frustrating part for my family is the wait and see approach. They would much rather have a fix. I'm happy to find someone else with this condition at least to chat with. I'd be happy to share my experiences in more detail if your interested. Doug

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I'm in the Wilkes-Barre/Scranton area, northeast Pa. How was the decision made for you to have surgery? Size of aneurysm? Surgery recommended for something like this? I have so little information about the condition, except that it's rare.

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Jen | @jurney01 | Jun 12, 2017
In reply to @dougf "Jen, You and I are both very rare. I was just diagnosed with a celiac artery..." + (show)
Profile picture for dougf @dougf

Jen,
You and I are both very rare. I was just diagnosed with a celiac artery Aneurism last week. I Like you was experiencing severe abdominal pain. I was absolutely not expecting this news after CT scan. Like you I was quickly transferred to a hospital that had vascular surgeons on staff. I'm now released with low grade pain with a wait and see approach. In two weeks they are repeating the CT scan to monitor it. The frustrating part for my family is the wait and see approach. They would much rather have a fix. I'm happy to find someone else with this condition at least to chat with. I'd be happy to share my experiences in more detail if your interested. Doug

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Jefferson Hospital and University of Penn are good. Are you near Philadelphia Pa?

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Kespectrum | @kespectrum | Jun 12, 2017
In reply to @dougf "Jen, You and I are both very rare. I was just diagnosed with a celiac artery..." + (show)
Profile picture for dougf @dougf

Jen,
You and I are both very rare. I was just diagnosed with a celiac artery Aneurism last week. I Like you was experiencing severe abdominal pain. I was absolutely not expecting this news after CT scan. Like you I was quickly transferred to a hospital that had vascular surgeons on staff. I'm now released with low grade pain with a wait and see approach. In two weeks they are repeating the CT scan to monitor it. The frustrating part for my family is the wait and see approach. They would much rather have a fix. I'm happy to find someone else with this condition at least to chat with. I'd be happy to share my experiences in more detail if your interested. Doug

Jump to this post

Doug,
I was diagnosed with celiac artery aneurysm two weeks ago when I presented with severe abdominal pain in ER and CT scans revealed aneurysm. I cannot believe how rare the disorder is. Was admitted and told by vascular surgeon, that if caused by inflammation, they would do steroid treatment, if caused by infection, I would be life-flighted to Philadelphia since the vascular surgeon was not experienced. That was Friday, 6/3/17. They kept me in to do another CT that following Monday. Evidently they didn't see a remarkable increase so was discharged with orders for follow up CT Scan (this week) and follow up with a different surgeon. Back story here....I'm following up with the colon/rectal surgeon who did my bowel resection after my Crohn's Disease flared and fistulated into my bladder in 2009. Diagnosed with Crohn's 2005. I have been on Humira ever since.
I feel like a walking time bomb, not knowing what's going on in my gut.

Not that I'd wish this on anybody, but finally glad to know I'm not alone.
Karen

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Kespectrum | @kespectrum | Jun 12, 2017
In reply to @kariulrich "I am wondering if anyone diagnosed with celiac artery aneurysm have an underlying disease?" + (show)
Profile picture for Kari Ulrich, Alumna Mentor @kariulrich

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

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I was diagnosed with celiac artery aneurysm June 3, 2017. I was diagnosed with Crohn's Disease in 2005, underwent a resection in my ilium 2009 and have been on Humira since. I have just joined this forum because I understand how rare CAA is and wonder if it has to do with the Crohn's as well as the Humira. Any insight would be appreciated.

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Kari Ulrich, Alumna Mentor | @kariulrich | Jun 3, 2017
In reply to @colleenyoung "Jen, like @hopeful33250 I too would like to get to know about you. I didn't find..." + (show)
Profile picture for Colleen Young, Connect Director @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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Dr.Sullivan is a wonderful physician, I agree with your recommendation!

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kdh1 | @kdh1 | Jun 3, 2017
In reply to @colleenyoung "Jen, like @hopeful33250 I too would like to get to know about you. I didn't find..." + (show)
Profile picture for Colleen Young, Connect Director @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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I had my surgery at Abbott the Doctors name is Timothy M. Sullivan. Very good Dr explains everything. Takes time not just in and out. Would highly recommend him.

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DeeDee | @nursecook1948 | Jun 2, 2017
In reply to @colleenyoung "Jen, like @hopeful33250 I too would like to get to know about you. I didn't find..." + (show)
Profile picture for Colleen Young, Connect Director @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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Where did you have your surgery? Dr.'s name?

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kdh1 | @kdh1 | Apr 14, 2017
In reply to @colleenyoung "Jen, like @hopeful33250 I too would like to get to know about you. I didn't find..." + (show)
Profile picture for Colleen Young, Connect Director @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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Mine was 5.5 so had grown quite a bit so it had to be operated  on.  I am glad it is over.

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