Celiac Artery Aneurysm: Anyone else with same illness?

Hi it’s been awhile since I posted, January 3, 2021. They found my celiac aneurysm, which I was told was a fusiform 1cm celiac aneurysm.
They sent me to a vascular surgeon who sent me to another. When I seen the 2nd vascular surgeon she played it down and actually only spent a few minutes with me. She said there is nothing to worry about unless it is 3-5cm and didn’t even recommend any f/u CT’s. I tried putting it in the back of my mind and tried not thinking about it. From what I have read her recommendation don’t come close to what others are recommending. I’m not sure what to do. I’m thinking of contacting my primary Dr to have order another CT to see if there has been any growth. I have a lot of the GI issues that others have had. I’m at a loss on what steps to take. I question the advice the vascular surgeon gave me. Did anyone else have a hard time finding someone who knowledgeable about celiac aneurysms? Thanks!

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

Does anyone ever have pain with this celiac thing, I have pain occasionally, in the in the abdomen area. My DR. and I Suspect that it may be caused by the median ligament putting pressure on my celiac artery which most likely caused the aneurysm in the first place. The pain is not all to severe it is more of a nuisance, but it does get worse when a gorge on eating, this is why I don't gorge at holidays any longer. I have known for 4 years now, and it is approx. 2+ something or another large, I forget the term, so I guess that is all I have to say I am confused in which type of surgery, (stints or vascular cut and repair) I should trust when the time comes because each year it always seems to have grown slightly. Thank you for reading and I hope you have the best of circumstances.

@jsto

Hello Jason and welcome to Mayo Connect. I see that you posted in July. I'm sorry that no one got back to you beforehand, but I'm glad that you found some help by reading the posts in this discussion thread.

Have you seen a doctor at Mayo yet?

Thank you for this information. i just received a bit of hopeful news from the doctor stating that the size was a minimal 9mm, so not yet 1cm. I have been referred for more tests.

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

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

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.