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Aortic Aneurysms – Introduce yourself & meet others

Aortic Aneurysms | Last Active: Dec 11 7:12pm | Replies (581)

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@GratefulEveryDay

Hello to All! Nice to connect here with ones with similar diagnosis and see how we are dealing emotionally, since most information I've rcvd is factual and statistical, which I truly appreciate also, but could use some emotional support! After a routine dr. visit Feb 2019, had bp 170/110 that day, so had an ECHO that revealed 3.9 Ascending Aorta Aneurysm. Last few months have been many tests, thankful to be at Mayo, where other aneurysms were discovered- Brain, 2 Illiac and Renal Aneurysm. Also, mention of Fibromuscular Dysplasia (elongated and twisted arteries). Have not had any follow-ups to that even! Brain Aneurysm is where Carotid meets the Ophthalmic Artery, so recheck on that one first- the end of July. Then recheck Aorta Oct since mom died of (undiagnosed) AAA- that dissected, in same area, arch of aorta, incidentally in 9 minutes. I've done 24 gene tests but no known Syndrome, ruled out Marfan's, etc. Definitely Familial Thoracic Aneurysm (hereditary) and the FMD. Just living life in the meantime, going on a 5-mile hike with a club in my area next Monday, level ground around a lake, but afraid to do uphill hikes, and unsure if I can take a plane anywhere. Was only told no running nor lifting weights. Sorry such a long post! I appreciate your writings here, to connect with similar situations and see how it is being treated and how you're doing! Janet

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Replies to "Hello to All! Nice to connect here with ones with similar diagnosis and see how we..."

Hello! Sounds like you’ve got a lot going on. Six years ago, I was diagnosed with an ascending aortic aneurysm. Didn’t even know that I had an aneurysm until I collapsed one day out of the blue. Turns out that I have an autoimmune disorder that doesn’t neatly fall into any of the vasculitis categories. I was scheduled for surgery about a month after the collapse. I was a little nervous waiting for the surgery. Doctors said that I shouldn’t worry about the aneurysm rupturing within a month. Unlike you, I didn’t have months to think about a growing aneurysm. All I can say is to continue to live your life as best you can. I am guessing that you will have surgery sometime in the future? Mayo Clinic is a great place , especially if you have a complicated case.

I do hope that you have a good support system with family and friends. I had to rely on many people after my surgeries. I am grateful that I had that support as my recovery was difficult due to complications. (Just so you know, I did not have my surgeries at a Mayo as I live in Southern California.). I am doing much better now. I somehow managed to remain optimistic throughout my procedures and long recovery.

I think this forum is a good place to get feedback and support. There aren’t many support groups out there for people who are dealing aneurysms pre and post surgery.

Best of luck.

Just want to say I had Thoracic Aneurysm surgery at Mayo 3 years ago at 78 years old and came thru it with flying colors. You are at one of the very best places for this surgery. My aorta aneurysm took several years to get to the point of a necessary surgery believe it was 5.5 size when it was determined to be a good idea. My surgeon was Dr. Alberto Pochettino, such a wonderful and expert doctor. You will be fine of this I'm sure. Good Luck to you and think positive, it really does help.

@GratefulEveryDay Hi Janet, You surely do have a lot of stuff on your plate. I can only comment on the ascending aortic aneurysm as I am unfamiliar with others. But what I know about the ascending aortic aneurysm is that the measure of 3.9 is good news. That is quite small and I am sure your cardio is keeping track of the growth rate. So maybe that is one issue you can decide to not worry about at the moment, just do watchful waiting. Your next ECHO will give you the info you need about how stable this aneurysm is.

I wish you good luck. It sounds like your MD's are being proactive with testing and watching the issues. Let them do the worrying and you continue to enjoy your life while following their instructions about controlling blood pressure and sticking with less strenuous activities.

Best wishes,
Donna