What makes ascending thoracic aortic aneurysms increase in size?

I suffered a complete type a one aortic dissection at the age of 50 in 2015. It is now 2025 and I’m alive and well and writing to you. I had to open heart surgeries to repair my burst aorta. This is not something that you can ignore or defer, or wish away. You are going to be OK. You are aware that you have a problem and that is 95% of the battle. Trust me. You do not want to have this happen emergently and have a dissection. One should begin dissecting there is no controlling it. Make good friends with A. well qualified thoracic surgeon. Find yourself a major Medical Center near you like Mayo, University of Minnesota Twin Cities, University of Texas, Houston, UCSD, La Jolla, Cleveland, clinic, etc.

I spent the last 10 years thinking about my aortic dissection and I had absolutely no time whatsoever to think about it when it happened. From the time I began dissecting till the time I was in surgery was about 42 minutes. If you get more time than that then your miles ahead of where I was. My quality of life is excellent and I have never been in better shape or happier to be alive. The life expectancy question is one which depends upon who you ask, but my most recent research shows that people who have survived the surgery and have lived at least 30 days after the surgery, Tend to add about 11 months to their life expectancy. That sounds odd, but the thinking is that once you survive this, you tend to take better care of yourself and hence your life is longer. I am thankful every day for the time I have. I honestly wish that I had known. I had a problem and could’ve dealt with it when I was at home in Minneapolis instead of 1600 miles away in San Diego. It was really traumatic for my wife and my kids for me to be in a cardiac ICU for three weeks. I had a really bad experience because I had a complete spiraling dissection starting at the top of my heart, and it was really touch and go. The good news for you is that you can have surgery in a planned manner when you have all of the people you need ready to go, well rested, And with all of the necessary resources in the right place. My fate was sealed and the good news for me was I happen to be in the right place at the right time. You on the other hand cannot guarantee that for yourself unless you schedule your surgery. Period it sounds like you’ve got a good medical team and you should listen to them and do everything you can to reduce your blood pressure and not to place any kind of unnecessary strain on your aorta. Listen to your doctors. Listen to your thoracic surgeon. They have your best interest at heart and they want to help you and give you an excellent quality of life. You’re going to be OK. peace.

Thank you moonboy for responding to me and God truly has other plans for you to be doing so well after such a horrific experience.

I appreciate your advice. While the thoracic surgeon I went to seems to be well qualified, the Cleveland Clinic is the closest to me. I will do my research for the best surgeon who has the most experience. I worked in healthcare over 30 years. It is the surgeon but the team is important too.

I agree, a planned surgery is better than an emergency. I have been lying in bed thinking, if this thing is growing, I have about 6 months. If I schedule the surgery and things don’t go well , that is all the time I have left or do I wing it and let fate take over. I have some contemplating to do. I’m sure I will speak to the doctor soon once he sees the results of the scan. Of course, the breast cancer meds have an effect on your heart, so the deck is somewhat stacked. Although, if I did not have BC, I would not known about the aneurysm, so that is a sign for me to take the steps to be aware and maybe the sign God wants me to have the surgery or to get things in order. Interestingly, when I was diagnosed with BC, an oncologist said so you won’t die of BC, so what if you die of a heart problem. We all have to go sometime. I just wasn’t planning so soon.

Again, thank you for your response and advice and wish you continued health.

Hi, I am same age as you and also have same type of anuerysm at 4.0. And I am very active. I had three out of four grandparents who had colon cancer, and I have always thought the Big "C" would be my biggest health problem. I thank God that my colonoscophies (sp.?) of every two years have been clear. So, I'm curious as to what caused the anuerysm. I don't know of anyone else in my family that had one. I've never smoked, and my blood pressure has been normal. You asked some very good questions about things that I have been wondering about. I am interested in statistics, also. I worry because I am in a rural area, and I don't think there are any thoracic specialists at the hospital closest to me--about an hour, and there is a heart hospital in Norfolk, about two hours away that I need to check out. Anyway, I had open-heart surgery in 2015 for a rare condition--myxoma--a benign tumor, calcified, andthe size of a golf ball inside my heart! Docs don't know what causes them, and they are more prevelant in females. I think a tickbite had something to do with it, and my cardiologist said I could be right. I need to ask the doc whether or not the open-heart surgery could have something to do with the anuerysm forming. Thank you for sharing, and I will keep you in my prayers.

@annieboo You bring up something interesting. I had Lyme Disease, which was treated. Interesting if that is a common denominator.

You, as are everyone in this group are in my prayers too. Thank you for sharing.

I have had Lyme many times and Erlichosis twice--once as recent as last year, as well as many of the co-infections caused by ticks. At one point, I was on long-term antibiotics, and I have been treated many other times. I am on a herbal protocol presently. I think that ticks have really messed with my health. I would like to participate in any studies about tick diseases, and I tried to contact Dr. Commins at UNC several times, but no one ever got back with me. There are no tick-literate docs in my neck of the woods, so I mostly rely on "specialists" outside the realm of PhDs.

I think studies show different average growth rates -- my impression is that as much as .1cm in a year would be considered standard. If it grows .5cm in a year, the recommendation is for surgery.

I had a situation similar to yours. I was at 4.5 when it was discovered, and a second scan one year later showed 4.7. It also made me nervous. The doctor ordered a scan in 6 mos. to look for more growth. The next scan show 4.5 again. I learned that there is a fair bit of error in the measurements (especially with versus w/o contrast). The value depends on lots of factors.

There is data on all the questions you pose. You'll have to dig into the research literature. You can do a Google search for relevant terms and wind your way to papers that try to answer these questions. You can also pose the questions in perplexity. ai, which will give references. I did this after my diagnosis, and I learned (1) the analyses often contradict each other (no surprise there, I guess) and (2) that it's hard for a lay person to get the context that's necessary to understand these well. For example, a paper may give you a relative risk without mentioning the absolute risk. They may give you the risk of death from X, but not mention what the risk of death in general is at a certain age.

That said, I feel the reading was worthwhile for me. I feel like I have an idea of where I stand. Reading the stories of people on this message board has also been very useful. An unexpected benefit of reading myself is that I have a better gauge on whether my doctor keeps up (he does).

I won't give you my interpretation of what I read because I'm not a doctor. The answers are out there, though. I guess I can safely say that after 1.5 years since diagnosis and all the reading, it doesn't enter my mind much. The odds are good in our favor. Now my ridiculously high CAC score is another story. 🙂

@bitsygirl

Thank you for your response that was very helpful and I appreciate the reference to with/without contrast. It was a question I had at the time of the scan, which the “tech” dismissed.

I agree, reading, albeit I take it with a grain of salt since I do not totally understand, is more helpful to be informed. Although, I must say that this forum with real people and real circumstances is very informative and at least gives me the opportunity to asks questions and to some extent, provides a level of calming. Thank you, and sending good vibes for positive outcomes for you and all in this predicament.🙏🏻