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 Support Group.

@jsto

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

Jump to this post

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

REPLY
@kimberlyh57

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!

Jump to this post

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!

REPLY
@onemind711

Hi, i was diagnosed with a 2cm celiac artery aneurysm 4 years ago. Im 57.

It is definately hard to find any recent research. I am going in this morning for my biannual CT angiogram, hoping that it hasnt grown. I was so glad to find this board because of its rarity and how its presence seems to linger in the back of my mind. I live in Utah so i had to go to Mayo once it was discovered. Originally it was for surgery because 2cm is the size which intervention is needed. They then said that it was only 1.4 cm wide and 2cm long, so i went on the watch and weight program.

Its not a diagnosis that sits well. They say that since there is not that many cases the data of rupture is just not available, but that the science behind the wall pressure and such makes watching less of a risk.

I dont get pain that often, but when i do its always a uneasy feeling and reminder when you know that the mortality rate if ruptured is high.

So, i guess we are just a special group of humans that must take life as a precious gift regularly. And do our follow-up as needed. Like i said, its been over 4 years and my lil guy hasnt grown at all, so maybe it never will and ill live to be a crotchety old man.

Warm regards,
Chris McArdle

Jump to this post

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

REPLY
@jsto

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

Jump to this post

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!

REPLY
@dan1230

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.

Jump to this post

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

REPLY

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.

REPLY
@kimberlyh57

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!

Jump to this post

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

REPLY

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!

REPLY
@bdickinson666

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

Jump to this post

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

REPLY
@dbarselow

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.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.