Celiac Artery Aneurysm: Anyone else with same illness?
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.
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 @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?
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.
Glad to give you some knowledge Shawn and ease your anxiety. Remember Anxiety causes stress, stress cause your blood pressure to rise, the rise in blood pressure causes you aneurysm to expand and the expanded aneurysm will burst and you are going to die. So work on your bp, stress level and diet. Good luck @becky1024
Hi Teresa, thank you for the welcome. I have not spoken to anyone at Mayo yet, but my doctor is supposed to be arranging that. Any suggestions on which Mayo location would be best? I did see a vascular surgeon in my area and we're doing another CTA in November to see if it's grown. Seeing GI specialist tomorrow to see if those symptoms could be related.
Thank you again for the welcome.
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.
Yes, I get pains in that area too. And reading through past comments, other do too. It's a scary feeling. I do wonder though, if I've been living with this for years as they assume, if I'm just ultra-aware of pains in that area now. Because I must of had pains for years, but didn't think anything of them. They come randomly and without association to an activity. I get them while sitting at my desk working, while driving, walking, it happens often. All the best to you as well.
I currently reside in Sydney and am in a similar situation. As I am a new member I am yet to be able to send you a private message but I will aim to message you once that is enabled. Alternatively, would you be able to private message me? It would be greatly helpful to get your insight. Thank you
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!