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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Hello I have the same thing I've not had surgery yet it causes pain but I'm kind of afraid to have it done I've had a lot of surgeries hope yours went well

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So, attached are 2 studies, one from 2002, one from 2022. In short, in 2002, they suggest surgery most of the time. In 2022, they are more inclined to wait and watch, based on size and if there is any growth. But the 2022 is suspect, to me, because they did not follow the patients very long AND they report NO ruptures -- when we know from earlier studies that while rare, there have been ruptures and mortality when ruptured is 40+ percent.

You can find the studies I did by using scholar.Google.com and inputting "celiac artery aneurysm." But they are mostly the same...

-- it is a very rare condition, though they are being reported more because they are found incidentally because of imaging for other purposes.
-- depending on they study, they frequently are watched if 2.0 or 2.5 cm or smaller -- unless they are growing.

I was leaning toward surgery because the consequences of rupture involved high mortality... and I am sure that is not just because of the bleeding, but because in an emergency a surgeon who has actually done CAA repair might not be available.

So... right now I am looking for a vascular surgeon who has done more than a couple CAA repairs. I will share when I do.

Good thoughts to all...

Shared files

02 jama debate- limited info (0-02-jama-debate-limited-info.pdf)

0 22 NYU- conservative- but no rupture is different f other studies (0-22-NYU-conservative-but-no-rupture-is-different-f-other-studies.pdf)

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@hopeful33250

Hello @10david4911 and welcome to Connect. I'm glad to see that you are doing some research on less invasive surgeries and I'm looking forward to seeing that information.

You mentioned that this is a recent diagnosis for you. What type of symptoms were you having that led to the diagnosis? Has your doctor discussed these less invasive surgical procedures?

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Apologies for not making it all the way through the postings... work getting in the way.

I was one of the apparent vast majority that was asymptomatic and the CAA was discovered while being scanned for something else. I had a concussion and my vitals were weird. When the head scan was negative, the trauma center did a full body scan, and found the CAA.

When I saw the vascular surgeon, weeks later, he (mis) read the follow-up scan and said we could do surgery or wait. When the radiologist's report came back, he measured it at 2.9x2.1x2.1... so suddenly I have two risk factors -- the size, and growth since the measurement at the ER.

I recall that the Texas Heart Institute did one of the circa-2001 studies and did a lot of surgeries. The author still works there, so I am going to try to reach him he can point to more recent studies, or anything else.

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No, the Stress Test showed I was fine even though I still have problems. Not sure what is next but digestive issues have come back to haunt me. Still having breathing issues but moving more. There not going to do anything about my Artery Problem till it gets bigger since it seems stable.

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@hopeful33250

Thank you for the added information, @dan1230. Did Mayo not recommend surgery because of the size of the aneurysm?

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That is correct.

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@dan1230

Mayo is my second opinion. I have several more appointments to hopefully narrow down what may be causing these issues. Mayo thinks surgery may not be necessary as of right now. But they are not the ones living with the pain. Will be waiting to see what the other visits point to. Thanks for the info on vasculitis.

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Thank you for the added information, @dan1230. Did Mayo not recommend surgery because of the size of the aneurysm?

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@hopeful33250

Hello @dan1230 and welcome! It sounds as if you have had a lot of problems that cause discomfort and pain. As you wrote, Mayo Connect is a good place to know that you are not alone with these health issues.

I understand that your surgery is scheduled for October. Are there meds that have been prescribed to help you during this time? Have the meds been of any help? I found an article on Mayo Clinic's website regarding vasculitis. Here is a link to that article, https://www.mayoclinic.org/diseases-conditions/vasculitis/diagnosis-treatment/drc-20363485

Have you heard back from Mayo Clinic about a second opinion?

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Mayo is my second opinion. I have several more appointments to hopefully narrow down what may be causing these issues. Mayo thinks surgery may not be necessary as of right now. But they are not the ones living with the pain. Will be waiting to see what the other visits point to. Thanks for the info on vasculitis.

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@challengergt

My Stress Test will be soon and that one will tell them a lot. I read about one and probably won't pass it since I have a hard time walking up hill without pain and my heart rate, BP getting high. Stairs wipe me out fast, so this is what they need to see.

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Hello @challengergt,

I see that you posted a couple of months ago about having a stress test. I hope that test gave your medical team additional information in order to develop a treatment plan.

I'd like to know how you are doing. Will you post an update?

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@10david4911

@colleenyoung I was recently diagnosed with CAA, 1.9x1.9x2.1 cm, so I am also right at the surgery/wait border also. The condition is still very rare, but...

The good news is there are more recent studies, and that non-invasive surgery is being used increasingly. I will post the links once I finish going through the archives here.

Best to all,

David

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Hello @10david4911 and welcome to Connect. I'm glad to see that you are doing some research on less invasive surgeries and I'm looking forward to seeing that information.

You mentioned that this is a recent diagnosis for you. What type of symptoms were you having that led to the diagnosis? Has your doctor discussed these less invasive surgical procedures?

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@dan1230

Hello everyone. It has been very informative to read all the posts on celiac aneurysms. Three years ago I went into the er with severe stomach pain. Found out that I had a dissection in my descending artery and three blood clots. They also found an aneurysm of my celiac artery that measured 1.5cm. Nobody has spoken to me about the aneurysm. Ugh! Was back in er this past Friday after almost passing out twice on Thursday, combined with severe stomach and back pain. Found out that I now also have systemic vacuities. My stomach is always hurting, more so if I eat. Have lost almost 35lbs in the last six weeks. Currently have surgery scheduled for October to repair dissection (if I can hold out that long). Waiting to hear from Mayo this week on getting a second opinion. Thanks again for all of your posts. Nice to know I’m not alone in this.

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Hello @dan1230 and welcome! It sounds as if you have had a lot of problems that cause discomfort and pain. As you wrote, Mayo Connect is a good place to know that you are not alone with these health issues.

I understand that your surgery is scheduled for October. Are there meds that have been prescribed to help you during this time? Have the meds been of any help? I found an article on Mayo Clinic's website regarding vasculitis. Here is a link to that article, https://www.mayoclinic.org/diseases-conditions/vasculitis/diagnosis-treatment/drc-20363485

Have you heard back from Mayo Clinic about a second opinion?

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