Celiac Artery Aneurysm: Anyone else with same illness?

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.

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

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.

How often should your surgeon have you in for a check.

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,

Jamie, Thank you for responding to my post. Your thought about having another opinion is helpful and I will consider that. Keeping my stress under control has been helpful for handling symptoms and just knowing they will pass. I try to do the usual self care stuff like yoga, walking, eating well, have people to talk with (that is why I was excited to find your group). And if the symptoms don't pass, I guess that is when it is time to get back into the doctor. Now that I know what the symptoms are, they are less frightening but I do still experience anxiety at times. I am curious as to how others handle this 'not knowing'.

Hi Mary @marylisa! Welcome to the group! Thank you for posting.

Being an advocate for your own healthcare should always be number 1. Even though you have an excellent doctor at Emory- you may have luck finding a physician that just happens to have another plan that may work. At Mayo, sometimes before an appointment can be set up, physicians will review medical records and decide if a patient should be seen. Would it hurt to have your medical records sent to a specialist at Mayo or Cleveland and ask to review? Just a thought.

While waiting for other members to reply- what have you found most helpful in handling symptoms? Do you experience anxiety with not knowing what to expect?