Celiac Artery Aneurysm: Anyone else with same illness?

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

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.

Best of luck, Dan. The wait and see is incredibly difficult and causes stress and anxiety - the exact things we're supposed to avoid.

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!

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

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!

No more waiting. Surgery is scheduled for early December. Hopefully this will take care of the pain and discomfort. 🙂

That's great news @dan1230! Best of luck to you and curious to hear how everything went. I have appointment on Dec. 18th to begin process for mine via interventional radiology.

Thanks and will do. Hope all goes well for you also.

JSTO,
I am now two and half months post op of my open abdominal repair of my SMA dissection and thrombosis. I am doing well. Surgery took over 10 hours and I lost almost my entire blood supply due to hemorrhaging. My doctors at Mayo, especially Dr. Mendes, we’re great. I spent a week in the hospital and then went home. Was on leave until the middle of February and have now returned to work. Not as Spry as I used to be, but will get there. Still have some episodes of pain, but think that is due to the healing process. I am able to eat pretty much anything I want now. I still have my Celiac dissection that they will continue to monitor. I have also just been diagnosed with pulmonary hypertension. Have testing next week to find out how severe.
How did your visit go?