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

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

Update... I saw a Vascular Surgeon here in Tulsa about 2 months ago who said the CAA was calcified and represented a very low risk of causing any issues. He told me- Don't Smoke, Walk 30 minutes a day no Heavy Lifting, Control Blood Pressure, take my Statin and don't worry about it. He said once per year on my scheduled CAT Scans they would monitor. Funny, it made me feel better. Funny I say becuse the thing being calcified is supposedly a good thing, but in general calcification in my anteries most assuredly is a bad thing. I'm going to Phoenix in May and may seek a second opinion at the Mayo Clinic.

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@dkmullins68

was diagnosed last year and was told it was inoperable, I have underlying conditions including NASH, kidney disease and have had a complete left colectomy. .Am trying to get second opinion before I have a stroke or rupture.

was

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Hello @dkmullins68,
Let me add my welcome to Mayo Clinic Connect. I can understand your concern after having been told that you have an inoperable aneurysm. Getting a second opinion is such a good plan. You do not mention where you live, but it would be a good idea to seek help from a multidisciplinary health care organization like Mayo Clinic or a university medical school. These health centers are research-oriented and best equipped to diagnose and treat difficult health issues.

Would you be able to travel to Mayo Clinic (3 locations in Minnesota, Florida, and Arizona), or are you near a university medical school?

What type of specialist have you seen thus far for this problem?

I look forward to hearing from you again. Will you post an update when it is convenient?

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@amandajro

Hello @dkmullins68 and welcome to Mayo Clinic Connect. You will notice that I have moved your post on fusiform celiac aneurysm into an existing discussion on the same topic to allow you to more easily connect with other members who understand what you are going through. Members like @kimberlyh57 and @bdickinson666 have recently joined the conversation looking for more information, like you, and may also have some recent updates to share.

When were you diagnosed and can you share a bit more about your timeline so that other members can connect?

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was diagnosed last year and was told it was inoperable, I have underlying conditions including NASH, kidney disease and have had a complete left colectomy. .Am trying to get second opinion before I have a stroke or rupture.

was

REPLY

Hello @dkmullins68 and welcome to Mayo Clinic Connect. You will notice that I have moved your post on fusiform celiac aneurysm into an existing discussion on the same topic to allow you to more easily connect with other members who understand what you are going through. Members like @kimberlyh57 and @bdickinson666 have recently joined the conversation looking for more information, like you, and may also have some recent updates to share.

When were you diagnosed and can you share a bit more about your timeline so that other members can connect?

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Looking for information and the best dr/hospital for this type of surgery.

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@colleenyoung

Hi @bdickinson666 and welcome. That must be a frightening situation to face at only 49. You may find this journal article of some help.
- Celiac Arterial Aneurysms: A Critical Reappraisal of a Rare Entity https://jamanetwork.com/journals/jamasurgery/fullarticle/212580

Have you been referred to specialist for surgical consult?

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Yes, thank you, I am seeing a vascular surgeon to determine what surgery should be done

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@colleenyoung

Hi @bdickinson666 and welcome. That must be a frightening situation to face at only 49. You may find this journal article of some help.
- Celiac Arterial Aneurysms: A Critical Reappraisal of a Rare Entity https://jamanetwork.com/journals/jamasurgery/fullarticle/212580

Have you been referred to specialist for surgical consult?

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what's sad and disappointing is that this article is almost 19yrs old..

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@bdickinson666

Hi all. I am very glad to have found this thread. I live in Sydney, Australia. I am 49. 7 weeks ago I had the sudden onset of central abdominal pain and left rib pain shooting through to the middle of the back. When it didn’t go away after four days, I went to the hospital and was diagnosed with a 2cm celiac artery aneurysm extending into the splenic artery with splenic infarction with associated clot and inflammation. They told me it was extremely rare and it seemed they did not know what to do. First I was told I would have a stent then they told me that the stent could throw emboli off the clot into the liver resulting in liver failure. They now are saying it will need some type of operation. Despite acknowledging that it was rare and they had never seen it before, they confidently told me that the pain would resolve in 2 weeks. It hasn’t. The pain is across the left ribs, that is from the spleen. On the right ribs and abdomen it is likely from the liver. It is usually through to the back too. As reported by others here, I feel exhausted and often need to lie down in a certain position to alleviate the pain. Some days I feel better and start to do things only to feel wiped out and in pain three hours later. I was told that over the long term the risk of rupture is about 40% hence the need for surgery soon.

I have been surprised by the similarity in accounts of this illness on this thread, particularly given the medical profession doesn’t know much about it. It is pretty frightening with such little knowledge but then reassuring that the experiences are so consistent.

Thanks for your posts about your experiences

Jump to this post

Hi @bdickinson666 and welcome. That must be a frightening situation to face at only 49. You may find this journal article of some help.
- Celiac Arterial Aneurysms: A Critical Reappraisal of a Rare Entity https://jamanetwork.com/journals/jamasurgery/fullarticle/212580

Have you been referred to specialist for surgical consult?

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Hi all. I am very glad to have found this thread. I live in Sydney, Australia. I am 49. 7 weeks ago I had the sudden onset of central abdominal pain and left rib pain shooting through to the middle of the back. When it didn’t go away after four days, I went to the hospital and was diagnosed with a 2cm celiac artery aneurysm extending into the splenic artery with splenic infarction with associated clot and inflammation. They told me it was extremely rare and it seemed they did not know what to do. First I was told I would have a stent then they told me that the stent could throw emboli off the clot into the liver resulting in liver failure. They now are saying it will need some type of operation. Despite acknowledging that it was rare and they had never seen it before, they confidently told me that the pain would resolve in 2 weeks. It hasn’t. The pain is across the left ribs, that is from the spleen. On the right ribs and abdomen it is likely from the liver. It is usually through to the back too. As reported by others here, I feel exhausted and often need to lie down in a certain position to alleviate the pain. Some days I feel better and start to do things only to feel wiped out and in pain three hours later. I was told that over the long term the risk of rupture is about 40% hence the need for surgery soon.

I have been surprised by the similarity in accounts of this illness on this thread, particularly given the medical profession doesn’t know much about it. It is pretty frightening with such little knowledge but then reassuring that the experiences are so consistent.

Thanks for your posts about your experiences

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Hello @rowens1206 and welcome to Mayo Clinic Connect. I am so glad you found this group and feel the sharing is helpful.

You are due to return for an appointment in just under a month. How are you feeling and what can members do to provide you support in the meantime?

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