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

Hi @kdh1

I merged your post/question about, "How often should your surgeon have you in for a check." with this discussion which you joined so that members could reconnect with you , and perhaps share their thoughts. I noticed it's been almost a year since you had your surgery; how are you doing, @kdh1? We'd love to get an update.

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I'm was diagnosed with a Celiac Aneurysm last October of 2017. The aneurysm is 1.3cm (now) and so far they are doing a wait and watch approach. I have had unexplained abdominal pain in the area of my liver for about 3 years all on my right side. I've had tons of tests, Ct scans, etc but no one could figure out what the problem was until I had a simple x-ray due to indigestion which showed something around T-12 in my spine…. So I had another CT scan and they found this aneurysm. My question is this: what's type of pain accompanies this? Mine seems to be like a 24/7 discomfort that is tight and binding and goes from the right side by my sternum under my ribs to my middle back on the right side. It makes my entire right side by my ribs hurt.
The surgeon says this pain/discomfort isn't connected but I see some of you say you had abdominal pain.
Anyway, I live in rural Oregon and have had one follow-up at which time he said the aneurysm went from 1.2 to 1.3 which could just be margin of error.
I'm worried about this pain that everyone wants to dismiss.
Any info on your pain (type, where it was, hour often, etc) would be helpful?
Thank you

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@dollylinda

I'm was diagnosed with a Celiac Aneurysm last October of 2017. The aneurysm is 1.3cm (now) and so far they are doing a wait and watch approach. I have had unexplained abdominal pain in the area of my liver for about 3 years all on my right side. I've had tons of tests, Ct scans, etc but no one could figure out what the problem was until I had a simple x-ray due to indigestion which showed something around T-12 in my spine…. So I had another CT scan and they found this aneurysm. My question is this: what's type of pain accompanies this? Mine seems to be like a 24/7 discomfort that is tight and binding and goes from the right side by my sternum under my ribs to my middle back on the right side. It makes my entire right side by my ribs hurt.
The surgeon says this pain/discomfort isn't connected but I see some of you say you had abdominal pain.
Anyway, I live in rural Oregon and have had one follow-up at which time he said the aneurysm went from 1.2 to 1.3 which could just be margin of error.
I'm worried about this pain that everyone wants to dismiss.
Any info on your pain (type, where it was, hour often, etc) would be helpful?
Thank you

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@dollylinda – I can understand why surgeon maybe wants to watch and wait with surgery, but the pain has to be explained. You can’t live like that. A gastroenterologist might be better to research the pain. It also happens that pain in abdomen is referred to area different from the origin. I understand it must be hard to see specialists when you live in a rural area. My advice is to go to a major university hospital for your evaluation.

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@dollylinda

I'm was diagnosed with a Celiac Aneurysm last October of 2017. The aneurysm is 1.3cm (now) and so far they are doing a wait and watch approach. I have had unexplained abdominal pain in the area of my liver for about 3 years all on my right side. I've had tons of tests, Ct scans, etc but no one could figure out what the problem was until I had a simple x-ray due to indigestion which showed something around T-12 in my spine…. So I had another CT scan and they found this aneurysm. My question is this: what's type of pain accompanies this? Mine seems to be like a 24/7 discomfort that is tight and binding and goes from the right side by my sternum under my ribs to my middle back on the right side. It makes my entire right side by my ribs hurt.
The surgeon says this pain/discomfort isn't connected but I see some of you say you had abdominal pain.
Anyway, I live in rural Oregon and have had one follow-up at which time he said the aneurysm went from 1.2 to 1.3 which could just be margin of error.
I'm worried about this pain that everyone wants to dismiss.
Any info on your pain (type, where it was, hour often, etc) would be helpful?
Thank you

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Thank you for your response. The pain is more of a discomfort. I have been to a gastroenterologist, which is where the process of all the testing started. Perhaps, I'll go back to him because this was diagnosed in a different city because I moved. That is a good idea and I thank you for that thought. I'm not concerned about the watch and wait approach… I'm just puzzled that he (the vascular surgeon from Eugene, OR) dismissed this pain that I have. I was wondering if anyone whose had this rare disorder gets this sort of pain.

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@kanaazpereira

Hi @kdh1

I merged your post/question about, "How often should your surgeon have you in for a check." with this discussion which you joined so that members could reconnect with you , and perhaps share their thoughts. I noticed it's been almost a year since you had your surgery; how are you doing, @kdh1? We'd love to get an update.

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My husband had been experiencing frequent UTIs over the past couple years, passing quite a bit of blood and large blood clots, so was referred by our primary care physician to a urologist. He had a CT scan with contrast on the 18th of May, and results were given to us by phone this past Monday, June 4–one day before my husband's 67th birthday. Unfortunately, he was found to have multiple cysts on his kidneys, consistent with polycystic kidney disease (PKD; genetic, as his maternal grandmother passed away from renal failure), as well as a "small" celiac artery aneurysm (they did not specify exact size), and enlarged prostate. My husband is scheduled for a return visit to the urologist on June 21, where he will have a cystoscopy, and a discussion of the CT results with the urologist. In terms of priority, is it prudent to receive a referral to a nephrologist first, or a vascular surgeon? We're in the Charlotte, NC area, so have fairly good resources locally. In addition, I have a good friend who has advanced PKD, and is awaiting a kidney transplant–she has been very supportive in terms of addressing questions associated with PKD, and sharing resources (the PKD Foundation is excellent, a resource she recommended utilizing), and offering the names of her nephrologists in a local practice, specializing in PKD treatment (still no cure, unfortunately). I also have a friend whose husband is a cardiac surgeon in a well-known heart and vascular surgery practice; her husband recommended a vascular surgeon in his practice with an excellent reputation for endovascular surgery and stent procedures. The problem is the rarity of the celiac artery aneurysm, which brings me to another question: does Mayo offer consultation to local vascular surgeons, or would a good vascular surgeon be up on the latest research? In addition, having PKD also raises the risk for intracranial aneurysms–another reason to consult with a vascular surgeon. We want to have all our questions lined up before the return visit to the urologist, but understand also that he may not have a lot of answers. It's a rather daunting journey ahead, but at least we have access to a good support network, and quality healthcare resources. For further background, aside from the UTI symptoms, my husband has not had any abdominal or flank pain, is active (walks at least 30 minutes daily), and is still working full-time. He has slightly elevated cholesterol levels, but can't take statins (muscle pain). He has fairly normal blood pressure–when taken manually at our primary care physician's office, that is; when a digital blood pressure cuff is used, however, it's always slightly elevated (e.g., at the urologist's office, it was 130/80). Obviously, keeping BP in check is a concern. He has a family history of cardiac disease–his mom died from complications of heart disease (had triple bypass surgery as a fifty-year-old), and was a heavy smoker. His father survived oral cancer, but later developed lung and esophageal cancer related to his pipe smoking. My husband is a non-smoker, thankfully.

Thank you in advance for any insights you might offer!

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@kanaazpereira

Hi @kdh1

I merged your post/question about, "How often should your surgeon have you in for a check." with this discussion which you joined so that members could reconnect with you , and perhaps share their thoughts. I noticed it's been almost a year since you had your surgery; how are you doing, @kdh1? We'd love to get an update.

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Helen, just be there for him..

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Hi @dollylinda,

I'm tagging @dougf @wstrasser @saschlief @kespectrum @onemind711 @tinga79 @marylisa, and Mentor @kariulrich with the hope they return to share their insights with you.
Given that the celiac artery is the first major branch of the abdominal aorta, I thought you might also appreciate the introduction to a few members who have been talking about living with an abdominal aortic aneurysm. Please let me introduce you to @janetpomponio @kdh1 @playsdixie @elsinann @lynnkay1956.

@dollylinda, would surgery be an option for you?

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@kanaazpereira

Hi @kdh1

I merged your post/question about, "How often should your surgeon have you in for a check." with this discussion which you joined so that members could reconnect with you , and perhaps share their thoughts. I noticed it's been almost a year since you had your surgery; how are you doing, @kdh1? We'd love to get an update.

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I am doing great, I am glad I had the surgery. I don't know how long the repair on my aorta is suppose to last. He sewed it together with mess I think. It was 2 years last March. I did not realize until after the surgery how serious it was. Very thankful.

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Hi
They say I don't need surgery and that the size is 1.3 x 1.3. I'm going to a vascular surgeon in Eugene, OR.
It's a stressful diagnosis.
My biggest worry is that my right side hurts. They seem to discount this even though I've had this discomfort for several years now.

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@dollylinda

Hi
They say I don't need surgery and that the size is 1.3 x 1.3. I'm going to a vascular surgeon in Eugene, OR.
It's a stressful diagnosis.
My biggest worry is that my right side hurts. They seem to discount this even though I've had this discomfort for several years now.

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I'm in the same situation as you. Mine was too small for them to do surgery so 14 mo's later, I in the wait and see mode. That is extremely stressful. Luckily I do not have any symptoms. So I am able to ignore it pretty well. I hope your discomfort goes away.

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Hey Dollylinda, I am sorry to hear you are going through this too. Generally I feel pretty good now. It has been since Dec. that I had a splenic infarction as a result of the celiac stenosis and aneurism. I had a lot of discomfort before that and what I called severe generalized malaise that they could not explain until I had the infarct event. Now I feel well but still can have some discomfort in both my left and right upper quadrants. I have learned to live with that and am just being followed. If the pain was intense I would pursue it more. It sounds like your discomfort can be intense and I hope someone will take you seriously and try to understand the cause. I went to a major teaching center where they understood this condition. Right now I do focus on taking care of myself – good diet, exercise, managing stress so at least I feel like I am doing something. What I have heard on this blog is that the uncertainty is something we all live with. I wish you the best and will look forward to hearing what you find out. I hope you will keep us posted. Be well.

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Hello .I see most of these posts are from a couple years ago. I hope someone is still out there. I have just been diagnosed with a 1.2. Celiac artery aneurysm. I went in with upper chest pain and the Dr. ordered a Ct scan of chest. Lungs were fine but incidentally found this aneurysm along with a dissection of the Sma. Reading a little here and there I feel quite frightened by all this. I see a vascular surgeon for a consult today. I think according to my GP, he is going to recommend only observing it. I wonder how you know if it is growing ,how dangerous is the wait and see approach?

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@janet26

Hello .I see most of these posts are from a couple years ago. I hope someone is still out there. I have just been diagnosed with a 1.2. Celiac artery aneurysm. I went in with upper chest pain and the Dr. ordered a Ct scan of chest. Lungs were fine but incidentally found this aneurysm along with a dissection of the Sma. Reading a little here and there I feel quite frightened by all this. I see a vascular surgeon for a consult today. I think according to my GP, he is going to recommend only observing it. I wonder how you know if it is growing ,how dangerous is the wait and see approach?

Jump to this post

I was diagnosed with a Celiac artery aneurysm last October. Same size as yours. I did go to a vascular surgeon and he is doing a watch and see approach. I went back 6 months later and they did an abdominal ultrasound. My aneurysm was 1cm larger but he said that most likely the difference was do to who was taking the measurement as 1cm is extremely small.
Anyway… I too was very frightened but I decided that I may have had this for years without knowing so I relaxed knowing that this is small, that whatever is going to happen will happen and that most likely everything is going to be fine like everything in life.
I still have pain/discomfort on my right side that everyone dismisses. In my case, I will go back in one year and get another abdominal ultrasound.
My suggestion is to try to relax as that is the best thing for your body. Easier said than done but now that I've known about this for 10 months I don't think about it much.
I think the only way they know that it's getting growing is by getting those abdominal ultrasounds.
I'm curious if they think your pain is from the aneurysm?
When you say your chest had pain, are you saying your rib area (that's where mine hurts… Under my ribs …Like I'm getting squeezed)
I have no idea how dangerous the wait and see approach is but it seems rather standard from what I gather. I was told they don't want to do anything unless it is 2cm or larger. Let me know what your surgeon says as I too am very curious.
Also let me know if they say the pain is related.
Best wishes!

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@janet26

Hello .I see most of these posts are from a couple years ago. I hope someone is still out there. I have just been diagnosed with a 1.2. Celiac artery aneurysm. I went in with upper chest pain and the Dr. ordered a Ct scan of chest. Lungs were fine but incidentally found this aneurysm along with a dissection of the Sma. Reading a little here and there I feel quite frightened by all this. I see a vascular surgeon for a consult today. I think according to my GP, he is going to recommend only observing it. I wonder how you know if it is growing ,how dangerous is the wait and see approach?

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You should definitely be followed by vasc dr. If you have any digestive problems they could be affected by you superior mesenteric artery problem. Being followed is important to keep a record of size change or other symptoms

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@janet26

Hello .I see most of these posts are from a couple years ago. I hope someone is still out there. I have just been diagnosed with a 1.2. Celiac artery aneurysm. I went in with upper chest pain and the Dr. ordered a Ct scan of chest. Lungs were fine but incidentally found this aneurysm along with a dissection of the Sma. Reading a little here and there I feel quite frightened by all this. I see a vascular surgeon for a consult today. I think according to my GP, he is going to recommend only observing it. I wonder how you know if it is growing ,how dangerous is the wait and see approach?

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Thank you for reply. I saw vascular surgeon for consult today. He is doing a wait and see on the aneurysm with a repeat Ct scan in six months
The dissecting artery he wants me to start on a cholesterol lowering drug at very low levels with gradual increase in hopes to strengthen artery walls and a lus dose asa
My blood pressure is low so he is reluctant to add that to medication regime. Fingers crossed this is appropriate treatment.

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