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

Any good information of any kind.

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@geor

Any good information of any kind.

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Hello @geor! Welcome to Mayo Clinic Connect. We’re happy to have you here.

You will notice that I moved your question to a thread that already exists on Celiac Artery aneurysm. Here you will be able to meet other members and read about information and experiences.

can you tell us, is the information you are seeking for yourself? or a family member?

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I just want to stop this loose stools to stop

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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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Hello. I read your post and found it interesting. I was diagnosed with a celiac artery aneurysm about 5 years ago and it has been stable up until now. I am going in next week for an update (last was in 2015). I was reading up on it again before my appt. and saw your post about your surgery. I was wondering how that was? Difficult? Quick? Quick recovery? Dangerous? WAs it a small incision? I was curious about the options they gave you about the repair. Thanks.

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I was diagnoses with celiac stenosis and aneurysm in Dec. 2017 after severe abdominal pain and a splenic infarction. I was hospitalized and put on blood thinners. I am not on anything now and seem to be doing well except for occasional discomfort in my left side (upper quadrant). Like you I feel like I am walking around with a time bomb inside and don't know what to expect. It is helpful to read what others are going through. I will have a follow up once a year but even my doctors have not seen a lot of this. My husband wonders if we should go to Mayo or Cleveland for a second opinion even though I have excellent doctor at Emory Hospital. Thanks to everyone for sharing their experience. Mary

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Hi Mary @marylisa! Welcome to the group! Thank you for posting.

Being an advocate for your own healthcare should always be number 1. Even though you have an excellent doctor at Emory- you may have luck finding a physician that just happens to have another plan that may work. At Mayo, sometimes before an appointment can be set up, physicians will review medical records and decide if a patient should be seen. Would it hurt to have your medical records sent to a specialist at Mayo or Cleveland and ask to review? Just a thought.

While waiting for other members to reply- what have you found most helpful in handling symptoms? Do you experience anxiety with not knowing what to expect?

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Jamie, Thank you for responding to my post. Your thought about having another opinion is helpful and I will consider that. Keeping my stress under control has been helpful for handling symptoms and just knowing they will pass. I try to do the usual self care stuff like yoga, walking, eating well, have people to talk with (that is why I was excited to find your group). And if the symptoms don't pass, I guess that is when it is time to get back into the doctor. Now that I know what the symptoms are, they are less frightening but I do still experience anxiety at times. I am curious as to how others handle this 'not knowing'.

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@hopeful33250

@jurney01 Hi Jen: I just saw your post regarding your health problem. I’m so sorry to hear about that, but I’m glad that you were able to have a procedure to help. While I’ve never been diagnosed with this, I also have a rare disorder, Neuroendocrine tumors, and I know how important it is to connect to others who are also going through something similar. Hopefully, someone on Mayo Connect will be able to relate with you and share their experiences. I see that you just recently joined Mayo Connect so let me welcome you to this very supportive, encouraging community. We are here for each other and learn from each other!

I “googled” the disorder and I see that is very rare. If you would like to share your experience, please let us know how your doctor found this aneurysm and if you were having specific symptoms or if it was just found incidentally. Best wishes to you as you share your experience and find help and support from others! Teresa

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I read your post, and I think, that I will be diagnosed with something similar. It is very frightening, when you feel your heart rate on top of your stomach and you have terrible pain in that region. It also can affect your liver and pancreas. I am having an ultrasound done in our hospital to follow the bloodvenes around the aorta. Hopefully, the pain has come from someplace else! But it is frightening. Let me know, what happened to you,

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How often should your surgeon have you in for a check.

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Hi @kdh1

I merged your post/question about, "How often should your surgeon have you in for a check." with this discussion which you joined so that members could reconnect with you , and perhaps share their thoughts. I noticed it's been almost a year since you had your surgery; how are you doing, @kdh1? We'd love to get an update.

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I'm was diagnosed with a Celiac Aneurysm last October of 2017. The aneurysm is 1.3cm (now) and so far they are doing a wait and watch approach. I have had unexplained abdominal pain in the area of my liver for about 3 years all on my right side. I've had tons of tests, Ct scans, etc but no one could figure out what the problem was until I had a simple x-ray due to indigestion which showed something around T-12 in my spine…. So I had another CT scan and they found this aneurysm. My question is this: what's type of pain accompanies this? Mine seems to be like a 24/7 discomfort that is tight and binding and goes from the right side by my sternum under my ribs to my middle back on the right side. It makes my entire right side by my ribs hurt.
The surgeon says this pain/discomfort isn't connected but I see some of you say you had abdominal pain.
Anyway, I live in rural Oregon and have had one follow-up at which time he said the aneurysm went from 1.2 to 1.3 which could just be margin of error.
I'm worried about this pain that everyone wants to dismiss.
Any info on your pain (type, where it was, hour often, etc) would be helpful?
Thank you

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@dollylinda

I'm was diagnosed with a Celiac Aneurysm last October of 2017. The aneurysm is 1.3cm (now) and so far they are doing a wait and watch approach. I have had unexplained abdominal pain in the area of my liver for about 3 years all on my right side. I've had tons of tests, Ct scans, etc but no one could figure out what the problem was until I had a simple x-ray due to indigestion which showed something around T-12 in my spine…. So I had another CT scan and they found this aneurysm. My question is this: what's type of pain accompanies this? Mine seems to be like a 24/7 discomfort that is tight and binding and goes from the right side by my sternum under my ribs to my middle back on the right side. It makes my entire right side by my ribs hurt.
The surgeon says this pain/discomfort isn't connected but I see some of you say you had abdominal pain.
Anyway, I live in rural Oregon and have had one follow-up at which time he said the aneurysm went from 1.2 to 1.3 which could just be margin of error.
I'm worried about this pain that everyone wants to dismiss.
Any info on your pain (type, where it was, hour often, etc) would be helpful?
Thank you

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@dollylinda – I can understand why surgeon maybe wants to watch and wait with surgery, but the pain has to be explained. You can’t live like that. A gastroenterologist might be better to research the pain. It also happens that pain in abdomen is referred to area different from the origin. I understand it must be hard to see specialists when you live in a rural area. My advice is to go to a major university hospital for your evaluation.

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