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 group.

@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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@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

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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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

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 2.9×2.1×2.1… 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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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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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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@tompatrickmlc

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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Hello @tompatrickmic and welcome. I'm glad you shared in the discussion group on Celiac Artery Aneurysm. You said that you have the same thing.

If you are comfortable doing so, could you share a little about your journey with this aneurysm? For example, how long ago was it diagnosed? You mentioned that you have pain, could you talk a little about when you have the pain and the level of discomfort? Is your doctor recommending surgery at this time or just a wait-see approach?

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Hello, I'm new here today. This week I was diagnosed with Focal dissection of the celiac trunk with associated aneurysmal dilation measuring up to 1.5cm. It was discovered inadvertently with a CT scan I was given to look at my appendix. While we're not sure if it's related to this diagnosis, I've suffered with constant painful bloating/gas since around 2005 and have been to many doctors and specialists to no avail. My new primary care doctor believes it is related, but can't be 100%. I'll be 49 in November.

I'm hoping to find the vascular surgeons at Mayo, or otherwise, who have experience with this exact surgery so my doctor can arrange an appointment. I'm in the Denver area, but my doctor suggested Mayo would be a great place to locate an experienced vascular surgeon for this particular situation.

Thank you and I wish the very best to all of you in this group. I've spent the last few days reading through the comments and they've been a comfort to me.

Jason

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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 was just diagnosed with this today, however I have not had any symptoms whatsoever. I went I for a completely different reason. Unsure on my next step, besides a referral.

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@shawn1775

I was just diagnosed with this today, however I have not had any symptoms whatsoever. I went I for a completely different reason. Unsure on my next step, besides a referral.

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My Abdominal Aortic Aneurysm was discovered the same way in 2004. My Urologist had me get a CT Scan to see why I was getting so many kidney and urinary infections. I had a second scan and he found a 3.1cm aneurysm. It was 18 years ago and I was about to go on Medicare after I retired in 2006. The government won’t pay to repair that type of aneurysm till it was 5cm. So it was a wait and see attitude. It took 7 years for the aneurysm reached 5cm, The stress of having that kind of aneurysm, knowing it could rupture any second and result in my death, was unbearable. It has an almost 100% mortality rate if it burst unless you’re in a hospital when it happens. I had no symptoms at all either. In 2011, it was repaired in a long procedure. Mine was complicated by the fact the stent looked like an upside down “Y”. The bottom part went up to the heart just 2” above and each other part went to each leg. It’s been 11 years since it was repaired and there is no leakage.

After looking up about your aneurysm, they may use the wait and see attitude. Each type of aneurysm had its own set of criteria for its repair. It may even be in a place where its inoperable. I lost a dear friend that happened to who had the same aneurysm as me but was in a spot nothing could be done. I had another friend who had an aneurysm in her brain. It actually popped but they were able to save her. So it’s difficult to give you any medical advice other than this. The lethal enemy of any aneurysm is your blood pressure. Each beat of your heart expands the aneurysm like a balloon and once expanded, it won’t go back to its original shape. So if your blood pressure is above 120/70, you better lower it as fast as you can. Your doctor will prescribe medication to keep it low. Till they do a battery of tests on you to determine their course of action, it’s a wait and see game. Remember, it took me 7 years of waiting, knowing I could drop dead any second if it burst. Good luck, hope all goes well for you. @becky1024

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@shawn1775

I was just diagnosed with this today, however I have not had any symptoms whatsoever. I went I for a completely different reason. Unsure on my next step, besides a referral.

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Hello @shawn1775 and welcome to Mayo Connect. I'm sure the discovery of the aneurysm was a surprise. Did the scan show the size of the aneurysm? Size is an important variable when deciding on treatment.

Did the doctor who discovered the aneurysm give you a referral to a vascular specialist?

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