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

Hello everyone. It has been very informative to read all the posts on celiac aneurysms. Three years ago I went into the er with severe stomach pain. Found out that I had a dissection in my descending artery and three blood clots. They also found an aneurysm of my celiac artery that measured 1.5cm. Nobody has spoken to me about the aneurysm. Ugh! Was back in er this past Friday after almost passing out twice on Thursday, combined with severe stomach and back pain. Found out that I now also have systemic vacuities. My stomach is always hurting, more so if I eat. Have lost almost 35lbs in the last six weeks. Currently have surgery scheduled for October to repair dissection (if I can hold out that long). Waiting to hear from Mayo this week on getting a second opinion. Thanks again for all of your posts. Nice to know I’m not alone in this.

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I just read this post. I hope that everything went well. Do You have any updates to share?

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@dougf

Jen,
You and I are both very rare. I was just diagnosed with a celiac artery Aneurism last week. I Like you was experiencing severe abdominal pain. I was absolutely not expecting this news after CT scan. Like you I was quickly transferred to a hospital that had vascular surgeons on staff. I'm now released with low grade pain with a wait and see approach. In two weeks they are repeating the CT scan to monitor it. The frustrating part for my family is the wait and see approach. They would much rather have a fix. I'm happy to find someone else with this condition at least to chat with. I'd be happy to share my experiences in more detail if your interested. Doug

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Jen - I just had a similar response on wait and see. I'm not comfortable with that and was wondering how you progressed? Seems like the ER and Vascular Dr. want to wait...to see if my pain is gastro or anerisum.

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Hi I had a celiac aneurysm which ruptured and caused damage to my spleen and liver. I had a massive blood loss and was very lucky to have survived. It took 3 days before the hospital realised how serious my condition was. The specialist repaired a second aneurysm a bit further up the celiac truck with stent and coils.

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I’m living with a celiac Artery aneurysm. My cardiovascular surgeon said that I shouldn’t worry about it. A recent different ER visit found that I had this torn aneurysm. The doctor said “we are going to have to transfer to a trauma hospital for emergency surgery and off I went

The trauma hospital acknowledged it and said “well, it’s not bleeding right now so we wasn’t you to come back to our hospital but right now we feel “safe discharging you” and they did. I am also on a blood thinner so I could bleed out quickly but my cardiovascular surgeon said
“ see you next year “. Could it burst I asked him and he said that it could. And it’s been a year and I’m seeing him Tuesday. We’ll see what he says.

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@andytheman

I’m living with a celiac Artery aneurysm. My cardiovascular surgeon said that I shouldn’t worry about it. A recent different ER visit found that I had this torn aneurysm. The doctor said “we are going to have to transfer to a trauma hospital for emergency surgery and off I went

The trauma hospital acknowledged it and said “well, it’s not bleeding right now so we wasn’t you to come back to our hospital but right now we feel “safe discharging you” and they did. I am also on a blood thinner so I could bleed out quickly but my cardiovascular surgeon said
“ see you next year “. Could it burst I asked him and he said that it could. And it’s been a year and I’m seeing him Tuesday. We’ll see what he says.

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Hoping all the best and you get it repaired.

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Well, Friday I went to the cardiovascular surgeon that laughed at me and this time I cornered him like a rat.
All I wanted is to know what size is it and the tear. No matter how big or tiny it was.
He grabbed my chart after I just had an echocardiogram or sonogram ( whatever it’s called) and he said “ look, I’ve been monitoring your aneurysm since 2017 and it was 1.7 cm then and today it reads 1.7 cm and I don’t see any bleeding going on and I don’t know why the hospital put you threw that.”
“So it hasn’t bulged in 6 years “
I said thank you, “that’s all I needed to know “ then he told me he was retiring and that he would find a good cardiovascular surgeon for me.

So now I’m concentrating on a health issue that has been going on for 3 years making me seek an ENT. My 1st visit he ran a flexible scope down my nostril and made me make several sounds. The news wasn’t good (or bad) yet. He said that my right vocal cord is “paralyzed ”.
Now I had to undergo 2 MRI’s back to back. The neck and the brain (looking for a possible stroke) I laid in that noisy MRI tube for 80 minutes. ( no headphones). Then he sent me for a swallow X-RAY you. Swallow contrast dye standing up. That was hospital number 1.
Then I was sent to a bigger hospital specializing in trauma surgery if needed.
I had a speech therapist put a bigger scope down my throat.
It had a little camera, a microphone and a bright light that made the movement of the vocal cord in slow motion. After I was finished with that he tells me that I had to go see a gastroenterologist ( I thought they were only for colonoscopies). But it was another test and another scope down my nostril. I fee him in a couple of weeks. Once I’m done all that I go see the ENT. He tells me I could have a nodule or cancer behind the fold. They call them “ folds”

Whatever it is requires surgery to repair the gap between the folds which is what I have. They use fat from your leg and put it between the 2 folds and that repairs it. ( for a while) no guarantees. Monday I go see my PCP as he wants to know what’s going on. The ENT he referred me too has not been updating my progress. Hopefully it’s not cancer. That’s the last thing I need. We’ll see how it turns out.

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@kespectrum

Could use some feedback from anyone familiar with celiac artery aneurysm...I had my post-hospitalization follow up visit with the surgeon who said my latest CT scan showed a decrease in the size of the aneurysm (good news!) however, he downplayed the seriousness of the condition, saying that within their surgical practice they have seen celiac artery aneurysms and not to be concerned. My online research has shown it to be a rare condition, and not to treat lightly. Where can I find a balance of facts?? Anybody have any suggestions?

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I was in a hospital ER for Coumadin poisoning ( my mechanical aortic Valve requires Coumadin for life. Normal level for me is 2.0 to 2.5 blood level but I was at 12.0! I was bleeding to death in my abdomen,
While there they said that they were going to have to send me to a trauma hospital for emergency surgery to repair my torn celiac artery. There ct scan had detected it.

Once the trauma hospital recognized it they told me that I had one but they felt I didn’t need emergency surgery because it wasn’t bleeding but to come back when it wasn’t an emergency later. They said to visit my cardiovascular surgeon. He was annoyed because he had appointments that needed his attention.

He said that he’s been watching it since 2017 when it was newly discovered. 6 years went by and my Celiac vessel aneurysm was at 1.7.cm 6 years ago and it was still 1.7 cm and not to worry about it. I’m to see him on a yearly schedule. I had no pain and the aneurysm hasn’t grown although I had a tear in it so to me that was a good sign. I didn’t need surgery. All doctors can do is observe it.

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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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If I can interject here. I had a cat scan done for a heart valve issue. The doctor said that I was going to be transferred to a trauma hospital because you have a torn celiac artery aneurysm. Like you said. It’s very rare.

When I got to the trauma hospital the cardiovascular surgeon acknowledged it but I forgot to ask him how big it was. He said that it wasn’t bleeding so they felt it was ok to discharge me with a torn but not bleeding celiac aneurysm.
He told me to see my own cardiovascular surgeon which I did. Well my cardiovascular surgeon said that he didn’t see anything even though he’s been monitoring yearly. He was annoyed and rushed out of the exam room. Last week I had 2 MRI’s, 2 cat scans and a few regular X-RAYS and said nothing but my ENT saw it and told me it was at 3.7 with a tear in it. I was seeing an ENT for a paralyzed right vocal cord.
He suggested I see my cardiovascular surgeon and that surgeon said that 10 years ago my aneurysm was at 1.7 and it’s still at 1.7. I said great. A few months go by and that’s how I found it to be at 3. 7 cm with a small tear in it. My ENT found it even though I was going to him for a paralyzed vocal cord. He found the torn Aneurysm looking for something else. He found it by accident. What now? One sends me to a trauma hospital and he said that since it wasn’t bleeding. I could be discharged and follow up with my annoyed doctor. Well there is a difference between a 1.7 torn aneurysm and a 3.7 torn aneurysm! I don’t know what to do other than find another surgeon.

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