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.

@dan1230,
Wow, that's incredible! What an experience you had, I can't even imagine. I'm so happy you're doing well and the doctors at Mayo took great care. I bet it feels wonderful to have that behind you and I'm sure the pain is healing-related and will hopefully go away after a while. Thank you for the update, I'd been wondering. Like you, my celiac dissection is being monitored for now. The doctor I spoke to in Oregon is willing to perform interventional radiology but he recommended a doctor in Denver so I could avoid travel. But that doctor feels the procedure is too risky and not willing. I then met with a heart medicine specialist because I too have hypertension and taking a beta-blocker. He said I'll be fine if I choose to get the operation, and I'll be fine if I choose not to. He said he's seen hundreds of celiac dissections and most do not grow. So I have another MRA scan in May to check the size and go from there. Options are good I guess and hopefully it hasn't grown to where I don't have options. All the best to you and a continued recovery!

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Hello everyone! Two weeks ago, I went to my family doctor with abdominal pains. He ordered a CT and everything looked good. But like many of you, they found a celiac artery aneurysm. My doctor told me that it was small and we would scan it in another year to see if it grew. He also gave me the option of seeing a vascular surgeon. So, I decided to follow that route and see what he says (I have an appointment on Monday, May1) . I have read up on it and it looks like they don't do anything until it reaches 2cm. I'm pretty close to that now with mine being 1.8cm and it makes me a little uncomfortable. I don't know if I should be seeing a local vascular surgeon or go to the Mayo clinic? Will they go ahead and do surgery since i'm only 2mm from 2cm? If anyone has any advice for me I'll gladly take it. I just don't know what to do with this rare and dangerous issue. Thank you!

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@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

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Well, I thought I was the only one! I’m kind of new here and thanks for having me.
I went to a hospital ER for something else. One test they did on me was a simple CT scan. A doctor finally came to the exam room and said “we are going to transfer you to a trauma hospital for emergency surgery “ when I asked him what he meant he said that the CTscan showed I had a rare celiac artery aneurysm and that it was 3cm long. “Not bad “ I said and he cut me off and said that there was a tear in it.

So they packed me up and called for an ambulance to transport me. The trauma hospital’s cardiovascular surgeon said that I would need to come back to the hospital for surgery but not now as an emergency case because the aneurysm wasn’t bleeding and the team decided that I was stable enough to be discharged. “ But contact your cardiovascular surgeon ASAP “

The next day I contacted my cardiovascular surgeon to make an appointment as instructed by the hospital and I told him that the hospital has said ASAP.
He says to me “all hospitals say that “ I could tell that he seemed annoyed by his tone of voice.

So the next day I was in his office and he had a radiologist do a sonogram of my abdomen. I was sent to an exam room and he finally comes in somewhat laughing saying “I didn’t see anything “ “see you next year!” and he started fast walking out of the room and I said “can it burst?” And he said that “ it could but we have ways to deal with that “

A burst aneurysm is an emergency and must quickly be treated or I understand that it could be fatal!! If I don’t appear right while jogging right away people say “heart attack “ and chest compressions won’t save me.
On top of that, I am on a blood thinner due to a mechanical aortic valve replacement I had years ago. I was thinking that it might leak or burst because my thinning blood could go through the wall. I wasn’t sure.

2 different hospitals and 2 different cardiovascular surgeons seen it but mine said he couldn’t see it?
I feel like I’m a walking time bomb. I think I need a second opinion.

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@johnnyfive

Hello everyone! Two weeks ago, I went to my family doctor with abdominal pains. He ordered a CT and everything looked good. But like many of you, they found a celiac artery aneurysm. My doctor told me that it was small and we would scan it in another year to see if it grew. He also gave me the option of seeing a vascular surgeon. So, I decided to follow that route and see what he says (I have an appointment on Monday, May1) . I have read up on it and it looks like they don't do anything until it reaches 2cm. I'm pretty close to that now with mine being 1.8cm and it makes me a little uncomfortable. I don't know if I should be seeing a local vascular surgeon or go to the Mayo clinic? Will they go ahead and do surgery since i'm only 2mm from 2cm? If anyone has any advice for me I'll gladly take it. I just don't know what to do with this rare and dangerous issue. Thank you!

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Hello @johnnyfive and welcome to Mayo Connect. I can certainly understand your concern. Please know that it is always your right to seek a second or even third opinion if you are uncomfortable with what your current medical team has advised.

In addition to the follow-up in a year, did your doctor advise you regarding restrictions like lifting, etc.?

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@hopeful33250

Hello @johnnyfive and welcome to Mayo Connect. I can certainly understand your concern. Please know that it is always your right to seek a second or even third opinion if you are uncomfortable with what your current medical team has advised.

In addition to the follow-up in a year, did your doctor advise you regarding restrictions like lifting, etc.?

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I have "mychart" and I just got a note saying to scan it in a year and nothing else. Nothing was said about anything else. I would have thought my family doctor would have at least met with me to put my mind at ease. I guess when you have "mychart" it takes the personal touch out of healthcare. It's made to be more efficient for doctors and get the word to patients quicker. I guess I get it, but with something like this a phone call would have been nice. I see the VS in two days and I'll post my findings and next step. With mine being 1.8cm I'm not taking any chances with my health. My gut feeling is that he will put me on the wait and see program. If so, I'll be contacting Mayo to get their opinion. If everyone says wait and see then I'll do that. I just want to make sure it's coming from the right people and then I'll be alright with it. I'll continue to post my journey for everyone.

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@johnnyfive

I have "mychart" and I just got a note saying to scan it in a year and nothing else. Nothing was said about anything else. I would have thought my family doctor would have at least met with me to put my mind at ease. I guess when you have "mychart" it takes the personal touch out of healthcare. It's made to be more efficient for doctors and get the word to patients quicker. I guess I get it, but with something like this a phone call would have been nice. I see the VS in two days and I'll post my findings and next step. With mine being 1.8cm I'm not taking any chances with my health. My gut feeling is that he will put me on the wait and see program. If so, I'll be contacting Mayo to get their opinion. If everyone says wait and see then I'll do that. I just want to make sure it's coming from the right people and then I'll be alright with it. I'll continue to post my journey for everyone.

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@johnnyfive

I appreciate the update! If you are using MyChart you might send a message to your doctor asking if there are any restrictions on lifting, or other exercises, etc.

I look forward to hearing from you as you continue to seek out the best information for your situation. It is important to be proactive regarding your health and I am glad to see that you are looking for the best treatment possible.

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@hopeful33250

@johnnyfive

I appreciate the update! If you are using MyChart you might send a message to your doctor asking if there are any restrictions on lifting, or other exercises, etc.

I look forward to hearing from you as you continue to seek out the best information for your situation. It is important to be proactive regarding your health and I am glad to see that you are looking for the best treatment possible.

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I have MyChart and left a message with my doctor that I was recently diagnosed with a Celiac artery aneurysm by a CT scan and it’s 3cm with a tear in it. That was 3 weeks ago and he never responded .

I had gone to a hospital ER for something unrelated and the work up included a CT scan. While I waited in the exam room the doctor came in and told me that I was going to be transferred to a trauma hospital for emergency surgery.

When I was examined at the trauma hospital they said that I would have to come back to their hospital but at the moment it wasn’t bleeding and the team feels that I didn’t need surgery that day..
I was told I could be discharged because it was felt that I was stable enough to do so but to contact my cardiovascular surgeon ASAP.

I had a feeling that he was annoyed by his tone of voice. He said “I’ll only look at it if the hospital says it’s an emergency “ He said that “all hospitals say that” (asap).
I got an appointment the next day and he made light of it and was in a rush and after a sonogram he said that he didn’t see anything.

He’s been checking on this known aneurysm for 3 years and now he’s saying that he didn’t see it? 2 different Hospital cardiovascular surgeons from 2 different hospitals acknowledged it and he’s saying that he didn’t see it. He said “see you next year “ and as he was rushing out the door I said “ could it burst” and he said “ it could, but we have ways to treat that”. And he left. What now?

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@andytheman

I have MyChart and left a message with my doctor that I was recently diagnosed with a Celiac artery aneurysm by a CT scan and it’s 3cm with a tear in it. That was 3 weeks ago and he never responded .

I had gone to a hospital ER for something unrelated and the work up included a CT scan. While I waited in the exam room the doctor came in and told me that I was going to be transferred to a trauma hospital for emergency surgery.

When I was examined at the trauma hospital they said that I would have to come back to their hospital but at the moment it wasn’t bleeding and the team feels that I didn’t need surgery that day..
I was told I could be discharged because it was felt that I was stable enough to do so but to contact my cardiovascular surgeon ASAP.

I had a feeling that he was annoyed by his tone of voice. He said “I’ll only look at it if the hospital says it’s an emergency “ He said that “all hospitals say that” (asap).
I got an appointment the next day and he made light of it and was in a rush and after a sonogram he said that he didn’t see anything.

He’s been checking on this known aneurysm for 3 years and now he’s saying that he didn’t see it? 2 different Hospital cardiovascular surgeons from 2 different hospitals acknowledged it and he’s saying that he didn’t see it. He said “see you next year “ and as he was rushing out the door I said “ could it burst” and he said “ it could, but we have ways to treat that”. And he left. What now?

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Your frustration at the different readings of the reports is certainly understandable. Please remember, @andytheman, that you can get another opinion if you are not comfortable with what you are being told. A research-oriented facility might be a good place to get another opinion.

Is there a university hospital school or a facility like Mayo Clinic where you could get another opinion?

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@hopeful33250

Your frustration at the different readings of the reports is certainly understandable. Please remember, @andytheman, that you can get another opinion if you are not comfortable with what you are being told. A research-oriented facility might be a good place to get another opinion.

Is there a university hospital school or a facility like Mayo Clinic where you could get another opinion?

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Yes I do. Brown University not too far from me. Graduates are mostly doctors and health professionals. The Warren Albert School of Medicine has Professors of medicine researching health issues. I think I need an impartial opinion even if it isn’t what I want to hear

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@andytheman

Yes I do. Brown University not too far from me. Graduates are mostly doctors and health professionals. The Warren Albert School of Medicine has Professors of medicine researching health issues. I think I need an impartial opinion even if it isn’t what I want to hear

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@andytheman

I hope that you get some resolution to these varying opinions. Will you post again if you get another opinion?

In the meantime, how are you feeling?

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