Celiac Artery Aneurysm: Anyone else with same illness?

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?

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.

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.

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.

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.

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?

Helen, just be there for him..

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!

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.

@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.