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.

@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.

Jump to this post

@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.

REPLY

Thanks so much for the information!

REPLY
@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.

Jump to this post

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

REPLY
@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.

Jump to this post

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.

REPLY

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.

REPLY
@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.

Jump to this post

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!

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

It may be that the folks that have had them rupture are no longer able to type...….. Just a morbid thought. Sorry.
My Dr. says if it explodes I will have severe pain in my abdomen and will know what it is. The rarity of the celiac AA is the problem when you get to the ER, no one has ever even heard of it.

REPLY
@therannmann

Hi, everyone:
I was recently diagnosed with a celiac aneurysm and an ascending aortic aneurysm, as well as transverse myelitis. Both were discovered by’accident’ - I had gone to the local ER because of severe lower back pain. Subsequently, a CT scan revealed the issues. Research tells me that a celiac aneurysm is quite rare. Mine is still quite small, about 1.5 cm. My research tells me that it’s too small for surgery ... and that its growth can be monitored by a semi-annual CT. In the meantime, I’m basically in ‘do nothing’ limbo.
Prior to the diagnosis, I was a workout warrior - pushing my body to its limits 6 days per week. I bench(ed) 260. Ran approximately 15 miles per week. Crunches. Push-ups. And, a host of other machines that targeted biceps, triceps, pectorals, back, etc. Fifty pull-ups daily. I don’t smoke, eat healthy. I am diagnosed afib, but take a beta blocker and digoxin to control rate and rhythm. My only other meds are omeprazole and vitamin D.
The aneurysm diagnosis has turned my world upside down. I live in west Texas - Abilene, to be specific. The one thoracic surgeon to whom I spoke while hospitalized immediately recused himself from surgical intervention, saying he was imminently unqualified to perform such a procedure. To date, my internal med specialist is the only doctor with whom I’ve followed up for treatment. I’m devastated at not being able to lift weights any longer. Included in that is not being able to perform menial duties in the house and yard: basically, life. My doc says I may lift 10-15 pounds - no more. But - he also says that he thinks it’s okay for me to do pull-ups in the gym. He says there’s a stark difference in using weights as opposed to using one’s own weight in terms of exercise. While I was thrilled with his conclusion, you may also paint me with a bit of cynicism. My procedure in doing pull-ups is not much different than doing a bench press: proper breathing is vital. Exhaling on the lift is standard protocol. Now, I certainly don’t wish to die on the gym floor. Abstaining from potentially damaging weightlifting is something that I know I must do.
My question, then ... is my doc wrong for green lighting pull-ups? My weight is 185 - so, it’s a workout for sure. I guess I don’t understand why I can’t shovel dirt in my yard but yet I can do pull-ups. If the aneurysm ruptures, it’s over - there is no one out here able to perform surgery. Dallas is 200 miles east; Houston, 375 miles southeast. Truthfully, given the rarity of the celiac aneurysm, I’m not terribly sure even Dallas or Houston would have a qualified surgeon.
And, these questions: what is protocol in determining when surgery is necessary? Will my aneurysm have to grow to a certain size? Is it strange to want to make that happen - so that I may resume a productive and active life as I had pre-diagnosis? I have things to get done! Am I never going to be the same prrson I was? I don’t want to go from being my wife’s hard-working husband to her burden! Am I just stuck in this situation?!
Comments appreciated.

Jump to this post

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.

REPLY

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.

REPLY
Please sign in or register to post a reply.