← Return to Celiac Artery Aneurysm: Anyone else with same illness?

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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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Replies to "@jurney01 Hi Jen: I just saw your post regarding your health problem. I'm so sorry to..."

Thank you for your kind words. The aneurysm was found once a cat scan was completed. I went to the hospital with abdominal pain and vomiting. I never expected this diagnosis. I had to be transferred to another hospital since the vascular surgeon never had experience with this illness.
I hope you are well as we share rare disorders. Lol. I appreciate your time and look forward to connecting with others like you ar the Mayo Clinic

Jen

@jurney01 Jen: Thanks for sharing some more info about your situation with all of us. Please keep us posted as you continue to learn about your disorder. Most of us have found that information and education is our greatest ally in dealing with disorders. When you add to that the sense of camaraderie that you find with others at Mayo Connect you have a winning combination! Best wishes.

I read your post, and I think, that I will be diagnosed with something similar. It is very frightening, when you feel your heart rate on top of your stomach and you have terrible pain in that region. It also can affect your liver and pancreas. I am having an ultrasound done in our hospital to follow the bloodvenes around the aorta. Hopefully, the pain has come from someplace else! But it is frightening. Let me know, what happened to you,

I too have a celiac artery compression
Not sure if it is a tangle of nerves compressing it or a ligament from my diaphragm )MALS). There is a 9 m mlm aneurysm beyond the compression
I have no pain at all . I do have factor Leiden V heterogenous, which means i have a propensity to form blood clots. I have two other arteries that leave the abdominal Ao
rta: renal and lower iliac which boyh have significant stenosis with thrombus. I just comleted surgery for clots in my femoral artery. Blood from the artery filled my abdominsl cavity. I was awake because m bp kept tanking and they could not give me anesthesia. I was in exteme pain my foot and leg started swelling and i lost all feeling in my foot. I was freezing cold and at one point mu haglobin was 4. Finally my bp went up enough and i was given something and my cardiologist inserted two stents. Ivwoke up with swelling going down and could wiggle my toes. My abdomen still hurt.i do not have any pail that MALS patients ha e and do not know why i don't. I wish you all well with your surgeries. I was 5 minutes away from a total leg amputatio.

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.

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.

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.