Thoracic Aortic Aneurysm 5.1cm- worried

My aortic aneurysm was discovered at age 62, mom also had and passed at 66 aortic aneurysm (I'm 67 now). Gene study showed LOX gene defect -similar to Marfan's, Ehlers-Danlos etc- no collagen or elasticity in the arteries thus 5 other aneurysms incl brain and renal. Aorta is 4.4 for me, recheck every 6mths. SINCE i have the Connective Tissue Disorder, I believe they will arrange surgery prior to a rupture- ideally. I meet with surgeon this month! If you have a disorder, surgery btwn 4.5-5.0- so very soon! PS- my cuz had ascending and descending separate ruptures/surgeries and is doing fine! We'll get through this! Mayo is the best place you can be! We're here for you!!

I'm here, 9.5 years later. Doing better than ever. I am far healthier now than before I suddenly dissected and had emergency open heart surgery in 2015. You're going to do great. You have a problem. You know it (I didn't). And, you and your doctors have a plan. You're going to do great. Peace.

How did the surgery go? My dad is 88 and his only hope is open chest repair as the endovascular repair for his ascending aortic aneurysm was unsuccessful. He’s at UCSF now and I came across your post. I know this is a shot in the dark but looking for some advice/inspiration as I navigate the difficult decision to push for open chest repair as his chance of survival is low but so is his current prognosis because of an endoleak.

My dad is 88 and his only hope is open chest repair as the endovascular repair for his ascending aortic aneurysm was unsuccessful. He’s at UCSF now and I came across your post. I know this is a shot in the dark but looking for some advice/inspiration as I navigate the difficult decision to push for open chest repair as his chance of survival is low but so is his current prognosis because of an endoleak.

I can tell you that I went through it at 50. It happened so fast that there was absolutely no time or consideration because I dissect it suddenly and it was all hands on deck and an emergency surgery in San Diego. I have little kids at home. I am now 60.

If I were 88 and facing it again, I would not go through it again. It was really hellish on my wife and family. It was really tough for several years and I don’t think that I would endure open-heart surgery at 88. It’s too much pain and the recovery is torment. I don’t know that I can think of any circumstance where I would do it at 88.

I’m sorry. I hope that’s of some help to you although I know it’s probably not comfort. Peace.

Hi,
I thought I would update on my husband's condition who initially started this discussion. He opted for an elective surgery. It was yesterday Jan 17th. That was a tough decision. The surgery went well. It was 4 hours. His valve was fine so the procedure he had was vsarr ( Valve sparing aortic root repair). Still in ICU with pain medications which is not helping much. Breathing without support. Pt came in to walk and made him sit on recliner for couple hours. Getting up and moving to recliner is a challenge. He is trying his best. Thank you for all the support from this group.

Hi @shiju5
So glad to hear he is recovering well and surgery was a success. I know after mine the hardest part was the initial getting out of bed hours after surgery. But it is so important to get up and move- not only for muscle and heart recovery but to help prevent complications like blood clots. The moving doesn’t feel good at the time though for sure! Best wishes to you all for his continued recovery!

Jeane Abbas

Thankyou for your support. Yes, moving is hard. And his hear rate is high 130, so they are doing ekg and his stomach is bloated so an xray to see if things are normal. One of the chest tubes still in place which may be taken out today.

I am glad to hear his surgery went well. Has he had any genetic results come back? I am in a very similar situation. I am local to MN, so the Mayo is reasonably close. I have contacted the Aortic Clinic and hope to get a consultation soon. I had a chest echo for an unrelated issue, and they found enlarged ascending aorta. I had my chest c.t. scan on 1/14/2025 and it confirmed a 5.1 cm ascending aorta and a 4.7 cm aortic root. Cardiologist suspects underlying genetic disorder as I don't seem to have any other contributing factors. (i.e. 47 yrs old, good health, good cholesterol, no diabetes, non-smoker, reasonable blood pressure 116/75 average). The cardiologist and surgeon recommend having a repair in the near future. I trust them but am hoping to utilize the Mayo if possible, due to the specialization. Although I wouldn't wish this on anyone, it is comforting to know I am not alone in this. I have a very physical job and have already informed them of restrictions, to which they were very accommodating. I was scheduled to fly within the next 2 weeks and am now very concerned of doing so. Has anyone done much air travel pre surgery?

So I suddenly dissected in 2015 down San Diego. Bad bad bad. You do not want that to happen. I'd been on a flight the day before. I'm pretty certain I would not be alive today and I've been on that plane when I dissected. Travel is stressful and they're just not gonna be able to help you at 38,000 feet. I wouldn't do it if I were you and I lived through it. I was cleared to fly home after 3 weeks in the cardiac ICU. I do travel pretty regularly now, Post open heart surgery. I don't think that it's a serious concern, but dissecting in midair is a nightmare my friend. At 5.1 cm, you are due for surgery I think. I'm here in Minneapolis and I would recommend the University Minnesota Twin Cities. My surgery was at UCSD La Jolla but the U of M has what appears to be some of the best imaging in the world. Most of the docs there are Mayo trained, and I think they probably have as much if not more experience with this particular surgery as Mayo. Don't forget: The FIRST open-heart surgery in the world was performed on September 4, 1952, by Dr. F. John Lewis at the University of Minnesota in Minneapolis. This groundbreaking surgery marked the beginning of modern open-heart procedures. Peace.