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
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No more waiting. Surgery is scheduled for early December. Hopefully this will take care of the pain and discomfort. 🙂
Hi @kimberlyh57, I decided to make a virtual appt. with Dr. Mann in Bend, Oregon on the 18th. He offers interventional radiology that "seals" up unruptured aneurysms versus full open surgery which, from what I can tell, most VS won't do until it's quite large. I know there are many places that do interventional radiology, but I like that this doctor has direct experience with the celiac artery - which my primary doctor has recommended I seek out since it's so rare. So we'll see how it goes. I had my third CTA yesterday and the size remains the same at 1.5cm. I sure would like to get it treated instead of waiting and waiting for it to grow. All the best to you!
Oh, my goodness, having a celiac aneurysm and dissection in 2019 at the age of 38 was a terrifying experience, and to now come across more than a few people who have shared the same experience brings me hope. I was in the hospital for 11 days, mostly trying to control my high blood pressure, which may have contributed to my condition. They are still running tests that have yielded no results. I go for my annual CT scan, and while it hasn't grown, I'm afraid it will rupture someday. I didn't need surgery at the time, but I'm wondering if I can demand one now that it's not crucial.
I was at the age where I considered having another child, and still have the desire to have another, yet in my current situation, I have been warned not to have one just yet. Nonetheless, given the possibilities, they want to conduct additional tests just to be sure. I honestly don't think my doctors know what the next step is; I just hope that if I request surgery with a surgeon who has experience with this type of condition, it will give me time to reconsider what is and isn't possible. I don't want to live on false hope, but it would be beneficial if my doctors could assist me in reaching the end result. I need answers!
I'm so glad I found you all with this condition; even if it's a celiac aneurysm without a dissection, it's close enough that I don't feel so alone.
Do you mind if I inquire as to how those who underwent surgery are doing? Is this a one-time surgery, and what is the life expectancy after surgery if everything goes well? Any suggestions would be greatly appreciated.
Thank you for sharing,
Deestone
#CeliacAneurysmDissectionSurvivor
#CADS
Hello jsto,
Thank you for the information on the diet, I will have to give it a try. I think I’m going to have my primary Dr. order another CT since it’s been since January 2021, hopefully it hasn’t changed. I also wish Mayo would offer a list of theirs that had experience with celiac aneurysms. This is the only forum I have found on celiac aneurysms and wish there was more information available. Also documented cases of VS who have cared for people with celiac aneurysms. I live in Ohio, and may also look into seeing if any of the experienced VS offer virtual appointments. I’m thankful for this site and for everyone posting their stories. I really appreciate your response and suggestions. Please keep me posted on how your doing and if you learn anything new. Thank you!
Best of luck, Dan. The wait and see is incredibly difficult and causes stress and anxiety - the exact things we're supposed to avoid.
I too have a celiac aneurysm along with a iliac one and a dissection of my SMA artery. Have had a battery of tests, scans and such to rule out any underlying conditions such as FMD, blood disease, etc. no luck. Continue to have stomach pain, usually associated with eating or drinking. Surgeons are discussing whether to do surgery or not. I do not like this wait and see approach. Hopefully hear something soon.
Hi @kimberlyh57, that's frustrating. I too saw a local VS and while he showed some concern, it wasn't what I expected and basically just said to have another CT in a few months and we'll go from there. I also saw a GI specialist to see if those issues were related to the celiac aneurysm and he said "it's hard to tell". So he started me on a low FODMAP diet which has helped some. Would your primary Dr. be able to send your images to another VS and have a virtual appointment? I might go that route eventually. I read through this entire forum and gathered names of Vascular Surgeons across the country who are familiar with our condition. It would also be great if Mayo provided a list of theirs who have direct experience with celiac aneurysms. I tried calling, but didn't get anywhere.
Dana Mann, MD - Bend Oregon
Dr. Marshall Dines - Advocate Hospital (Lutheran General) Park Redige, IL
Paul DiMuzio, MD, FACS - Philadelphia, Pa
Dr. Lee Centennial Hospital - Nashville
Dr. Jay Vasquez Vascular surgeon - Dallas
Timothy M. Sullivan - Abbott Northwestern Hospital Bozeman, MT
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 there,
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
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.