Celiac Artery Aneurysm

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

@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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@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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@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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@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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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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@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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@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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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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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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@kespectrum

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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I have GERD (acid re-flux) that I take a daily pill for, but nothing like the pain I experienced with this. They said the same thing with me that the pain was most likely from the inflammation around the aneurysm. Since it’s gone down no more pain. That doesn’t mean it wont flare up again at some point. I think they are most reluctant to do anything because I have no present symptoms. If I had constant pain I’m sure they would consider surgery to eliminate the problem. I also had some colon polyps removed but nothing serious. They found some diverticulitis but again nothing to worry about. I was concerned because my Father died of esophageal cancer and my Mom had to have a colostomy because of bowel blockage. So I have tried to address any gastrointestinal issues early.

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@kariulrich

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

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Hello @kespectrum,

My sincere apologies for the tardy welcome! We’re so glad that you’ve joined us in this group on Connect.

As you point out celiac artery aneurysm 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

With regards to Crohn’s disease and Humira, I would encourage you to view Mayo Clinic’s Inflammatory Bowel Diseases (IBD) blog: http://ibdblog.mayoclinic.org

@barens2 @guener @jewel8888 @jay_baruch @chicagomichelle do you have any thoughts about Humira and any links to CAA?

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@kariulrich

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

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Could use some feedback from anyone familiar with celiac artery aneurysm…I had my post-hospitalization follow up visit with the surgeon who said my latest CT scan showed a decrease in the size of the aneurysm (good news!) however, he downplayed the seriousness of the condition, saying that within their surgical practice they have seen celiac artery aneurysms and not to be concerned. My online research has shown it to be a rare condition, and not to treat lightly. Where can I find a balance of facts?? Anybody have any suggestions?

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Hi….i was just diagnosed w mals..median artucate ligament syndrone..i am having open surg soon. I had a nissen fundopilation done about six years ago. I had a full wrap done. My surgeon wax chief gastro at dartmouth hitchcock hosp in nh..this dr told me that the wrap either full or partial..cannot be undone..unless something has changed in the few years since. I had a difficult time eating for over a year after that F surg. But..i have no symptoms oif gerd anymore..now am dealing w mals. I hope this helped you somne. Carolina

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Can someone please explain to me what this means and how serious is this?

IMG_1862

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Hello @clevelandpatient,

Welcome to Connect. Thank you for sharing your information. We cannot give any medical advice or diagnoses here, but given that your report mentions celiac artery, I moved your message to the Digestive Health group so that you can meet @kariulrich, @jurney01@saschlief @dougf @kespectrum @janetpomponio @kdh1 @lynnkay1956 who have been talking about abdominal aortic and celiac artery aneurysms.

@clevelandpatient, could you share a few more details? We look forward to getting to know you.

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@carolina58

Hi….i was just diagnosed w mals..median artucate ligament syndrone..i am having open surg soon. I had a nissen fundopilation done about six years ago. I had a full wrap done. My surgeon wax chief gastro at dartmouth hitchcock hosp in nh..this dr told me that the wrap either full or partial..cannot be undone..unless something has changed in the few years since. I had a difficult time eating for over a year after that F surg. But..i have no symptoms oif gerd anymore..now am dealing w mals. I hope this helped you somne. Carolina

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Hi @carolina58 I am so sorry to hear about your MALS diagnosis. Can you explain what you mean by a full wrap?

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