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

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@dougf

it's clear you have done your research like most of us here. It's standard not to operate on the smaller aneurysms and many of us are in the wait and monitor mode. I certainly understand the frustration this brings. My doctor told me only to not lift heavy things. Not sure what that really means. I still lift 40lb bags of dog food at the store to bring home. I have had mine for at least 2 years now with no additional growth. Since they seem to have no idea what the root cause of them are I personally think that they are just playing it safe by stating "take it easy". I headed for 60 years old, I'm overweight and I'm kind of OK with all of it. So my advice is do what you think is best for you and your family and your particular situation. There is no right answer only the one that you decide is best for you. Maybe a workout with lighter weights. One more observation. We all get scared when we get the diagnosis and ponder the results of it rupturing. However in this group I have not heard of anyone having that happen. There can be many reasons for that. Modified behaviors or if there was a bad outcome it doesn't get reported back. I appreciate the dr.s giving me worst case scenarios but i think those happen very rarely. Again maybe it's just my outlook and my situation. Hope this helps.

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Thanks for the thoughts. In the infancy of this whole thing, I’ve found lots of contradictory information. I’m not the picture of confidence, but will try to soak up as much information as possible and ask plenty of questions.
Thanks for your thoughts and well-wishes. Best to you, also.

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@randy1950

Wow double aneurysms! I have the Celiac one. My vascular surgeon says operate at 1.5CM. Mine is 1.3CM. Discovered 6 months ago by accident at 1.24CM. Check with a CTA scan every 6 months. I was a avid bicycle rider and had a fall. Broke lots of ribs, shattered my clavicle and punctured my lung. Doc says the trauma may have also caused the aneurysm. I suggest finding a vascular Dr. or at least a cardiologist that knows what a celiac artery is. (mine didn't). Dallas is not too far for a checkup and if they know about your aneurysms they can fly you to Baylor before you check out, hopefully. I recommend Dr. Jay Vasquez Vascular surgeon. 214.821.9600 at Baylor Dallas. He is going to be my second opinion. I have had good reviews about him. I wish you good luck.

What I read is 5CM for operating on a AAA.

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Thanks, Randy -
I’ve not been able to find a standard of information or treatment in terms of celiac aneurysms. I appreciate your thoughts, especially the mention of the surgeon in Dallas ... I’ll speak to my primary care physician to see if an appointment with the surgeon is a possibility.
Thanks also for your info regarding the size of aneurysms eligible for surgical intervention. I’ll be sure to inquire about that further with my doctor.
Best wishes!

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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

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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I enjoyed your post and your attitude. I appreciate being connected to this group as members share their individual experiences. There are so few of us that sharing collective experiences helps me ( and hopefully others in the group) to better understand our condition. My celiac aneurysm was detected about 4 years ago and I just recently began developing some periodic digestive issues for the first time in my life. My Dr. believes that all this is unrelated but I empirically feel differently based on what I am learning from all of you. I am interested in seeking a second opinion from a vascular surgeon who has actually dealt with the issue...and I am prepared to travel to find such a DR. From what I have picked up thus far there is one DR. in Illinois and another at Baylor in Texas. Would love to know others.

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@codonpatrick

I enjoyed your post and your attitude. I appreciate being connected to this group as members share their individual experiences. There are so few of us that sharing collective experiences helps me ( and hopefully others in the group) to better understand our condition. My celiac aneurysm was detected about 4 years ago and I just recently began developing some periodic digestive issues for the first time in my life. My Dr. believes that all this is unrelated but I empirically feel differently based on what I am learning from all of you. I am interested in seeking a second opinion from a vascular surgeon who has actually dealt with the issue...and I am prepared to travel to find such a DR. From what I have picked up thus far there is one DR. in Illinois and another at Baylor in Texas. Would love to know others.

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

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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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