Celiac Artery Aneurysm: Anyone else with same illness?

Hello all. I started this topic 10 year ago not knowing what to expect. Thank you all for your information. I now have Superior Mesenteric Artery Syndrome (SMAS) is an incredibly rare condition, with experts estimating that only.01
to .3 of the general population has it. I underwent a procedure we're 2 stents were placed in the artery at University of Pennsylvania in Philadelphia. My vascular surgeon had me following up every 2 years. She said my celiac embolism changed over the past year also. My appendix also had to be removed last year. Apparently, this is probably genetics. My luck. I will be following up with Dr on 29th of June. Thank you everyone again and stay healthy!!!

@andytheman
Hello!
Hope you are doing well!! Thank you for your information. Unfortunately I underwent the embolization and didn't get a second opinion in 2016. I have been doing well but in 2025 had my appendix removed and now 2026 I have Superior Mesenteric Artery Syndrome (SMAS) is an incredibly rare condition, with experts estimating that only .01
to .3 of the general population has it. I underwent procedure and had 2 stents placed in artery. Now vascular surgeon wants to monitor me more often as she thinks it may be hereditary. My luck! I'm in my early 50's and never expected anything like this. Thanks again

@jurney01 Hi, in 2024, I was diagnosed late with superior mesenteric artery dissection and aneurysmal celiac tripod dissection. No diagnosis. On the recommendation of a vascular surgeon, I underwent genetic testing, and in addition to the alpha-1 antitrypsin deficiency, which I knew I had, I also had variants for Ehlers-Danlos and Marshall-Stickler, all connective tissue diseases. I had even suspected that it was also Segmental Arterial Mediolysis. Not being sure of the diagnosis or how to manage it, other than keeping my blood pressure low, is hard. Then, living with the thought of being hanging by a thread and knowing if something breaks, you're done for, doesn't help. Did they give you any diets to follow?

Hugs,
Fabio

@jurney01 I wish you well. Must be frustrating to have all these things. I am still waiting for my next cardiovascular surgeon appointment in 2 days. Will see what he says.
Good luck !

If you have had a dissection you definitely should be looking for the best surgeon for your aneurysm. My son had many surgeries to remove aneurysms. I would recommend that you find a good surgeon sooner rather than later. They were watching his aneurysms and then one night his celiac trunk artery aneurysm that had being monitored and was stable for over 10 years ruptured. He was 25. I was very diligent and he had the best surgeons in the country but he got seconds not minutes. Please don't wait, don't put it off get the best doctors at the best heart hospitals in your area, have a discussion with your doctor and don't let them put you off. Get the medical care you need while you can. My son is the reason they found the ARIH1 gene mutation that causes aneurysms. He was patient zero. They are learning and now helping people because of the study they did on him. Any aneurysm is a ticking clock that can stop at any second. He had lived from his first surgery at 6 years old in 2005 and had multiple surgeries. Until May 4, 2024. Please talk to your heart doctor and get the help you need. I hope this helps you make a good decision. Bye the way the night my son had his dissection in November 2011 on his upper descending aorta is when I met his surgeon that followed him and kept him alive for another 13.5 years was when he told me that he should have been being watched with a Ct or MRA not the 3D Echo his cardiologist had been using. If she would have been, the dissection might not have happened back then. Educate and Advocate for yourself while you can. There are no 2nd chances. I would do anything for it to have been me and not him. I hope this helps whoever reads it.