Celiac Artery Aneurysm

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

Thanks so much for the information!

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@onemind711

My Doc at Mayo said no restrictions. I have a 1.8cm celiac Artery Aneurysm diagnosed about 5 years ago. Its not changed in any of the film's from the MRIs. I go every 2 years. I have an unexplained fatty liver with elevated blood numbers which also seems to be a common ailment with others. I have GERD and take omeprizole for that. I have pain now and again under my right rib, and sometimes its not comfy to try sleeping on that side. I experience back issues with severe stenosis and lots of pain. But over all im ok, i live my life free of worry most of the time, but it all takes its toll. Im 58 and who knows when my time is up, but i gotta live, so ive chosen to just get a MRI every two years and forget about it as often as i can.

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@onemind711
I appreciate the freedom with which you live your life. I’m still a newbie at dealing with this thing – so many emotions and so much information and so many changes! I’m nearly 61. I’m quite energetic and enthusiastic about life. Certainly I’m going to miss my workouts … I really pushed my body to take on as much or more than the younger guys at the gym. And, successfully, I might add. No stereotype was too sacred to tackle: if I wanted to enjoy the endorphins, I knew I had to do the work. There is an innate satisfaction in knowing that I was able to accomplish pretty much anything I tried in the gym. I didn’t ‘enjoy’ everything, but that’s not the issue – the accomplishment was the driver.
Meh – enough about that. Gotta change … no use pining for something I can no longer enjoy. I’ll turn to cardio-centric exercises henceforth.
I’m a disabled veteran and the VA is ultimately in charge of my care. While I’m grateful for the healthcare the VA provides, I’m also painfully aware of the bureaucracy that slows efficient and urgent care. I just have to relax until they ‘catch up’ with my trepidation. In the meantime, I am considering perhaps temporarily relocating to a former home of ours, Nashville. The VA hospital there works well with Vanderbilt Medical Center, an internationally-renowned research hospital. Someone mentioned a Dr. Lee @ Vandy – he might be worth my time in contacting.
I’ve rambled enough this morning. Thanks for your encouragement. I can only hope that my own attitude will eventually match your own. Until then, however, I feel like I’m carrying two live grenades around – probably being overly careful in everything.
God bless – take care.

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@therannmann

@onemind711
I appreciate the freedom with which you live your life. I’m still a newbie at dealing with this thing – so many emotions and so much information and so many changes! I’m nearly 61. I’m quite energetic and enthusiastic about life. Certainly I’m going to miss my workouts … I really pushed my body to take on as much or more than the younger guys at the gym. And, successfully, I might add. No stereotype was too sacred to tackle: if I wanted to enjoy the endorphins, I knew I had to do the work. There is an innate satisfaction in knowing that I was able to accomplish pretty much anything I tried in the gym. I didn’t ‘enjoy’ everything, but that’s not the issue – the accomplishment was the driver.
Meh – enough about that. Gotta change … no use pining for something I can no longer enjoy. I’ll turn to cardio-centric exercises henceforth.
I’m a disabled veteran and the VA is ultimately in charge of my care. While I’m grateful for the healthcare the VA provides, I’m also painfully aware of the bureaucracy that slows efficient and urgent care. I just have to relax until they ‘catch up’ with my trepidation. In the meantime, I am considering perhaps temporarily relocating to a former home of ours, Nashville. The VA hospital there works well with Vanderbilt Medical Center, an internationally-renowned research hospital. Someone mentioned a Dr. Lee @ Vandy – he might be worth my time in contacting.
I’ve rambled enough this morning. Thanks for your encouragement. I can only hope that my own attitude will eventually match your own. Until then, however, I feel like I’m carrying two live grenades around – probably being overly careful in everything.
God bless – take care.

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Thank you for your service! Good luck in Tenn.

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@therannmann

@onemind711
I appreciate the freedom with which you live your life. I’m still a newbie at dealing with this thing – so many emotions and so much information and so many changes! I’m nearly 61. I’m quite energetic and enthusiastic about life. Certainly I’m going to miss my workouts … I really pushed my body to take on as much or more than the younger guys at the gym. And, successfully, I might add. No stereotype was too sacred to tackle: if I wanted to enjoy the endorphins, I knew I had to do the work. There is an innate satisfaction in knowing that I was able to accomplish pretty much anything I tried in the gym. I didn’t ‘enjoy’ everything, but that’s not the issue – the accomplishment was the driver.
Meh – enough about that. Gotta change … no use pining for something I can no longer enjoy. I’ll turn to cardio-centric exercises henceforth.
I’m a disabled veteran and the VA is ultimately in charge of my care. While I’m grateful for the healthcare the VA provides, I’m also painfully aware of the bureaucracy that slows efficient and urgent care. I just have to relax until they ‘catch up’ with my trepidation. In the meantime, I am considering perhaps temporarily relocating to a former home of ours, Nashville. The VA hospital there works well with Vanderbilt Medical Center, an internationally-renowned research hospital. Someone mentioned a Dr. Lee @ Vandy – he might be worth my time in contacting.
I’ve rambled enough this morning. Thanks for your encouragement. I can only hope that my own attitude will eventually match your own. Until then, however, I feel like I’m carrying two live grenades around – probably being overly careful in everything.
God bless – take care.

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I also thank you for your service and wishing the best for you. i am a bit older than you but enjoy aggressive workouts virtually everyday. My knees have been damaged by years of long distance running so i resort to elliptical machines for cardio. I also have a regimen of weight work and machine exercises. I haven't received any instructions from my vascular surgeon about curtailing or eliminating work outs. Perhaps this is another example of the medical community not providing standardized clarity on how to deal with such a rare condition…and yet another reason why shared experiences from each of us in this group is worthwhile and valuable.

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@ritaself

Dr. Lee in Nashville is well trained in our situation,

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Thanks! It is good to know that there are Doctors who have dealt with and understand our condition.

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I will add my name to the list. Mine was actually found during a CT Scan for Kidney stone in 2012. Nothing was made of it back then. Not until recently within the last 2 months where I started having the discomfort under the rib cage did I go back in for a CT Scan with contrast where it was revealed again but the size 1.6cm hasn't changed in the 7 years. I go to see a Vascular surgeon here in the North Atlanta area tomorrow. Seems strange that I had this 7 years ago, it hasn't changed in size, but I have only started feeling the discomfort or pressure that others have had also only recently. Some days I can really feel it and then there may be several days where I don't even notice it. Anyways, will let you know what they say tomorrow.

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Thanks for sharing this information! Good luck tomorrow and I ( all of us ) are looking forward to hearing what you learn.

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@mpolityka

I will add my name to the list. Mine was actually found during a CT Scan for Kidney stone in 2012. Nothing was made of it back then. Not until recently within the last 2 months where I started having the discomfort under the rib cage did I go back in for a CT Scan with contrast where it was revealed again but the size 1.6cm hasn't changed in the 7 years. I go to see a Vascular surgeon here in the North Atlanta area tomorrow. Seems strange that I had this 7 years ago, it hasn't changed in size, but I have only started feeling the discomfort or pressure that others have had also only recently. Some days I can really feel it and then there may be several days where I don't even notice it. Anyways, will let you know what they say tomorrow.

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Do share when you get more info, im sure all of us would like to know.

Liked by codonpatrick

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Back from my visit with Vascular Surgeon. Not much different news to report. He said since the size of mine 1.6cm hadn't changed over the past 7 years that they would not do any repair unless it got up to around 2.5 cm. He said he had done a repair previously but that the surgery is just too tricky and not necessary at this point. Scheduled a follow up CT for one year out.

Does anyone know if an Ultrasound would provide necessary results to avoid repeated CT's?

I guess I can live with knowing I have this and know that mine hasn't changed over the last 7 years so I try not to worry about it. The issue I have is the unexplained pressure, aching under the rib cage. Some days like I said it is better than others. He recommended trying an acid reflux medicine or antacid to see if that helps. Has anyone else found any remedy that seems to help with these similar symptoms?

Also, to try and prevent the aneurysm from getting larger he suggested taking a daily aspirin and a cholesterol med. Anyone else get this recommendation? I just saw on the nightly news last night that the FDA has warned now against taking aspirin daily and it has other side effects. Not sure if it is worth it for me to start this at age 49 knowing mine hasn't grown. Curious to what others think or have done?

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@mpolityka

Back from my visit with Vascular Surgeon. Not much different news to report. He said since the size of mine 1.6cm hadn't changed over the past 7 years that they would not do any repair unless it got up to around 2.5 cm. He said he had done a repair previously but that the surgery is just too tricky and not necessary at this point. Scheduled a follow up CT for one year out.

Does anyone know if an Ultrasound would provide necessary results to avoid repeated CT's?

I guess I can live with knowing I have this and know that mine hasn't changed over the last 7 years so I try not to worry about it. The issue I have is the unexplained pressure, aching under the rib cage. Some days like I said it is better than others. He recommended trying an acid reflux medicine or antacid to see if that helps. Has anyone else found any remedy that seems to help with these similar symptoms?

Also, to try and prevent the aneurysm from getting larger he suggested taking a daily aspirin and a cholesterol med. Anyone else get this recommendation? I just saw on the nightly news last night that the FDA has warned now against taking aspirin daily and it has other side effects. Not sure if it is worth it for me to start this at age 49 knowing mine hasn't grown. Curious to what others think or have done?

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Well that's good news! Many of us get a pain under our ribs, mine is like a strong twinge that comes on kinda strong, but goes away on its own. Mine doesn't change either, its a weird thing to live with but like you i forget about it. I have weird liver enzymes too, they go up and down, but they call it NASH. I personally thinks it's related, but the docs just don't know. I've got a referral to a Neuro surgon because of that. I'll let y'all know what he says

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Doesnt it seem odd that celiac aneurysm is so rare yet more and more people are coming here with one. Also the drs tell me they cause no symptoms which us who have them know this is bs alot of us have talked about the rib pain pressure and like me after meals comes the pain. I also get tired for no reason alot. Mine is at 2.0 now. Financially ruined. About to be mentally ruined. Can't pick my daughter up anymore. Before this I rode a bike 11 miles a day very active lifted very heavy things at work. Now I'm on light duty . I get the feeling alot of people dont understand the whole wait and watch thing when I tell them… idk I'm just so done with this already. Then I read stories of people on the wait and watch for years. I am not going to be able to do that. I know it's wrong to say I almost wish it would get bigger. I'm just done

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Please do let us know what the Neuro Surgeon says. I take it you haven't been able to find any remedy to alleviate the discomfort? I may try the Nexium for acid reflux like my surgeon recommended but not convinced that is the cause. Also, did you guys get told to take an aspirin or cholesterol to control the aneurysm? I am just very reluctant to do that since the size of mine hasn't changed in 7 years, not sure I want to introduce something else that may have side effects.

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Never been told that about aspirin and I dont think it's an acid reflux issue either. It's not like heart burn or anything . Its shortly after starting to eat a meal ,pressure pain swelling feeling. I understand the arteries run closer to your back bone then your chest but its something… to many people with celiac aneurysms describe the same feeling/discomfort

Liked by codonpatrick

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Bob, curious if you have ever taken Imitrex? My symptoms started right after I took it for some migraines I was experiencing and was just wondering if it could be related? I agree I don't believe it has anything to do with acid reflux either. Have you ever had an Endoscopy done to see if that revealed anything? I have a referral to see the Gastro doctor but I'm not convinced it has anything to do with my stomach.

Liked by codonpatrick

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@bobrush

Doesnt it seem odd that celiac aneurysm is so rare yet more and more people are coming here with one. Also the drs tell me they cause no symptoms which us who have them know this is bs alot of us have talked about the rib pain pressure and like me after meals comes the pain. I also get tired for no reason alot. Mine is at 2.0 now. Financially ruined. About to be mentally ruined. Can't pick my daughter up anymore. Before this I rode a bike 11 miles a day very active lifted very heavy things at work. Now I'm on light duty . I get the feeling alot of people dont understand the whole wait and watch thing when I tell them… idk I'm just so done with this already. Then I read stories of people on the wait and watch for years. I am not going to be able to do that. I know it's wrong to say I almost wish it would get bigger. I'm just done

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Sorry that this condition has been so debilitating for you. Like others in this group I have been told that digestive and other issues are unrelated to a celiac aneurysm. The fact that virtually all of us suffer the same symptoms sees to be strong evidence that there is a direct connection.

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