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.

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.

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@hopeful33250

@jsto

Hello Jason and welcome to Mayo Connect. I see that you posted in July. I'm sorry that no one got back to you beforehand, but I'm glad that you found some help by reading the posts in this discussion thread.

Have you seen a doctor at Mayo yet?

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Hi Teresa, thank you for the welcome. I have not spoken to anyone at Mayo yet, but my doctor is supposed to be arranging that. Any suggestions on which Mayo location would be best? I did see a vascular surgeon in my area and we're doing another CTA in November to see if it's grown. Seeing GI specialist tomorrow to see if those symptoms could be related.

Thank you again for the welcome.

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@shawn1775

Thank you for this information. i just received a bit of hopeful news from the doctor stating that the size was a minimal 9mm, so not yet 1cm. I have been referred for more tests.

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Glad to give you some knowledge Shawn and ease your anxiety. Remember Anxiety causes stress, stress cause your blood pressure to rise, the rise in blood pressure causes you aneurysm to expand and the expanded aneurysm will burst and you are going to die. So work on your bp, stress level and diet. Good luck @becky1024

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@becky1024

My Abdominal Aortic Aneurysm was discovered the same way in 2004. My Urologist had me get a CT Scan to see why I was getting so many kidney and urinary infections. I had a second scan and he found a 3.1cm aneurysm. It was 18 years ago and I was about to go on Medicare after I retired in 2006. The government won’t pay to repair that type of aneurysm till it was 5cm. So it was a wait and see attitude. It took 7 years for the aneurysm reached 5cm, The stress of having that kind of aneurysm, knowing it could rupture any second and result in my death, was unbearable. It has an almost 100% mortality rate if it burst unless you’re in a hospital when it happens. I had no symptoms at all either. In 2011, it was repaired in a long procedure. Mine was complicated by the fact the stent looked like an upside down “Y”. The bottom part went up to the heart just 2” above and each other part went to each leg. It’s been 11 years since it was repaired and there is no leakage.

After looking up about your aneurysm, they may use the wait and see attitude. Each type of aneurysm had its own set of criteria for its repair. It may even be in a place where its inoperable. I lost a dear friend that happened to who had the same aneurysm as me but was in a spot nothing could be done. I had another friend who had an aneurysm in her brain. It actually popped but they were able to save her. So it’s difficult to give you any medical advice other than this. The lethal enemy of any aneurysm is your blood pressure. Each beat of your heart expands the aneurysm like a balloon and once expanded, it won’t go back to its original shape. So if your blood pressure is above 120/70, you better lower it as fast as you can. Your doctor will prescribe medication to keep it low. Till they do a battery of tests on you to determine their course of action, it’s a wait and see game. Remember, it took me 7 years of waiting, knowing I could drop dead any second if it burst. Good luck, hope all goes well for you. @becky1024

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Thank you for this information. i just received a bit of hopeful news from the doctor stating that the size was a minimal 9mm, so not yet 1cm. I have been referred for more tests.

REPLY
@jsto

Hello, I'm new here today. This week I was diagnosed with Focal dissection of the celiac trunk with associated aneurysmal dilation measuring up to 1.5cm. It was discovered inadvertently with a CT scan I was given to look at my appendix. While we're not sure if it's related to this diagnosis, I've suffered with constant painful bloating/gas since around 2005 and have been to many doctors and specialists to no avail. My new primary care doctor believes it is related, but can't be 100%. I'll be 49 in November.

I'm hoping to find the vascular surgeons at Mayo, or otherwise, who have experience with this exact surgery so my doctor can arrange an appointment. I'm in the Denver area, but my doctor suggested Mayo would be a great place to locate an experienced vascular surgeon for this particular situation.

Thank you and I wish the very best to all of you in this group. I've spent the last few days reading through the comments and they've been a comfort to me.

Jason

Jump to this post

@jsto

Hello Jason and welcome to Mayo Connect. I see that you posted in July. I'm sorry that no one got back to you beforehand, but I'm glad that you found some help by reading the posts in this discussion thread.

Have you seen a doctor at Mayo yet?

REPLY
@shawn1775

I was just diagnosed with this today, however I have not had any symptoms whatsoever. I went I for a completely different reason. Unsure on my next step, besides a referral.

Jump to this post

Hello @shawn1775 and welcome to Mayo Connect. I'm sure the discovery of the aneurysm was a surprise. Did the scan show the size of the aneurysm? Size is an important variable when deciding on treatment.

Did the doctor who discovered the aneurysm give you a referral to a vascular specialist?

REPLY
@shawn1775

I was just diagnosed with this today, however I have not had any symptoms whatsoever. I went I for a completely different reason. Unsure on my next step, besides a referral.

Jump to this post

My Abdominal Aortic Aneurysm was discovered the same way in 2004. My Urologist had me get a CT Scan to see why I was getting so many kidney and urinary infections. I had a second scan and he found a 3.1cm aneurysm. It was 18 years ago and I was about to go on Medicare after I retired in 2006. The government won’t pay to repair that type of aneurysm till it was 5cm. So it was a wait and see attitude. It took 7 years for the aneurysm reached 5cm, The stress of having that kind of aneurysm, knowing it could rupture any second and result in my death, was unbearable. It has an almost 100% mortality rate if it burst unless you’re in a hospital when it happens. I had no symptoms at all either. In 2011, it was repaired in a long procedure. Mine was complicated by the fact the stent looked like an upside down “Y”. The bottom part went up to the heart just 2” above and each other part went to each leg. It’s been 11 years since it was repaired and there is no leakage.

After looking up about your aneurysm, they may use the wait and see attitude. Each type of aneurysm had its own set of criteria for its repair. It may even be in a place where its inoperable. I lost a dear friend that happened to who had the same aneurysm as me but was in a spot nothing could be done. I had another friend who had an aneurysm in her brain. It actually popped but they were able to save her. So it’s difficult to give you any medical advice other than this. The lethal enemy of any aneurysm is your blood pressure. Each beat of your heart expands the aneurysm like a balloon and once expanded, it won’t go back to its original shape. So if your blood pressure is above 120/70, you better lower it as fast as you can. Your doctor will prescribe medication to keep it low. Till they do a battery of tests on you to determine their course of action, it’s a wait and see game. Remember, it took me 7 years of waiting, knowing I could drop dead any second if it burst. Good luck, hope all goes well for you. @becky1024

REPLY
@hopeful33250

@jurney01 Hi Jen: I just saw your post regarding your health problem. I'm so sorry to hear about that, but I'm glad that you were able to have a procedure to help. While I've never been diagnosed with this, I also have a rare disorder, Neuroendocrine tumors, and I know how important it is to connect to others who are also going through something similar. Hopefully, someone on Mayo Connect will be able to relate with you and share their experiences. I see that you just recently joined Mayo Connect so let me welcome you to this very supportive, encouraging community. We are here for each other and learn from each other!

I "googled" the disorder and I see that is very rare. If you would like to share your experience, please let us know how your doctor found this aneurysm and if you were having specific symptoms or if it was just found incidentally. Best wishes to you as you share your experience and find help and support from others! Teresa

Jump to this post

I was just diagnosed with this today, however I have not had any symptoms whatsoever. I went I for a completely different reason. Unsure on my next step, besides a referral.

REPLY

Hello, I'm new here today. This week I was diagnosed with Focal dissection of the celiac trunk with associated aneurysmal dilation measuring up to 1.5cm. It was discovered inadvertently with a CT scan I was given to look at my appendix. While we're not sure if it's related to this diagnosis, I've suffered with constant painful bloating/gas since around 2005 and have been to many doctors and specialists to no avail. My new primary care doctor believes it is related, but can't be 100%. I'll be 49 in November.

I'm hoping to find the vascular surgeons at Mayo, or otherwise, who have experience with this exact surgery so my doctor can arrange an appointment. I'm in the Denver area, but my doctor suggested Mayo would be a great place to locate an experienced vascular surgeon for this particular situation.

Thank you and I wish the very best to all of you in this group. I've spent the last few days reading through the comments and they've been a comfort to me.

Jason

REPLY
@tompatrickmlc

Hello I have the same thing I've not had surgery yet it causes pain but I'm kind of afraid to have it done I've had a lot of surgeries hope yours went well

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Hello @tompatrickmic and welcome. I'm glad you shared in the discussion group on Celiac Artery Aneurysm. You said that you have the same thing.

If you are comfortable doing so, could you share a little about your journey with this aneurysm? For example, how long ago was it diagnosed? You mentioned that you have pain, could you talk a little about when you have the pain and the level of discomfort? Is your doctor recommending surgery at this time or just a wait-see approach?

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