1. < Aortic Aneurysms

How do you address the uncertainty?

Posted by malcorozan @malcorozan, Nov 9, 2023

Hello, so glad to find this group! I am a 45yo male, just diagnosed with an ascending aortic aneurysm at 45mm. I also have a bicuspod aortic valve. I am struggling with how to cope with the uncertainty of this diagnosis. I have always been a planner and I have lots of irons in the fire usually. I guess I'm wondering how you decided what to start or continue doing and what to stop or put off? I get a very frustrating response of wait and see from my doctors about when to expect surgery or a rupture. I don't know how to plan my future if I have a big surgery and recovery coming at basically any time?

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jsolem | @jsolem | Mar 1 9:09am
In reply to @schega "Mindfulness is a practice we all need to have in this situation and with all things..." + (show)
@schega

Mindfulness is a practice we all need to have in this situation and with all things in this life.

Jump to this post

Thanks for your sharing. Good work! And it is work. Finding a balance between acceptance and taking action in whatever ways you can is helpful. Yes, when our physical focus widens into the spiritual dimension of our being, there is a release that surrender gives to keep opening to life as it unfolds.

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liveoak | @liveoak | Mar 2 11:02am

Rather than leave a big cut and paste, below in are my thoughts on this very topic in another thread. Hope this helps? God bless.
https://connect.mayoclinic.org/discussion/new-diagnosis-of-ascending-aortic-aneurysm-and-im-terrified/?pg=14#comment-1195298

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ladyrose | @ladyrose | Mar 2 2:05pm

My kids have been quite nervous about my AAA. ITS 4.1 or 3.9 depending which md reads the scan. I’ve told my kids, it’s a blessing. If it blows, it’ll be. POP DEAD HEAVEN. I will admit I still get scanxiety when I have to go for cut scans, but there isn’t a lot we can do with this diagnosis. I’ve already had a lung removed from cancer (no never smoked yet I got it) and don’t want to go through such a brutal surgery.

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1 reply
charlanepj | @charlanepj | Mar 2 2:55pm
In reply to @ladyrose "My kids have been quite nervous about my AAA. ITS 4.1 or 3.9 depending which md..." + (show)
@ladyrose

My kids have been quite nervous about my AAA. ITS 4.1 or 3.9 depending which md reads the scan. I’ve told my kids, it’s a blessing. If it blows, it’ll be. POP DEAD HEAVEN. I will admit I still get scanxiety when I have to go for cut scans, but there isn’t a lot we can do with this diagnosis. I’ve already had a lung removed from cancer (no never smoked yet I got it) and don’t want to go through such a brutal surgery.

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I don't mean to sound inconsiderate, but after retirement I had the most health issues I have ever experienced in my life. I had never been hospitalized, never had a surgery, nothing. I retired at 58. At 66 I had three surgeries. My aneurysm dissected at 4.5 and I had emergency surgery at Mayo. I live 2 hours away. It will be three years this June. It took me a few months but I have finally have the mind set, that I lived day to day BEFORE finding this problem. I continue to do the same thing today. I have to admit it can be scary but it was before. I always said I began to die the day I was born - nothing is different. Find whatever it takes to re-direct your new life. Be you!
Best wishes!
cpj

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wiggy3 | @wiggy3 | Mar 2 10:23pm

I am a 70 yr old female and have an abdominal aortic aneurysm. It was measured at 6.7 x6.2. My surgeon said definite surgery, but called a few days later saying he is looking into a possible method for stents. I’m in limbo for awhile not knowing. I would love to adjust to the fact that I could die, but so far I haven’t really accepted this fact. I had a bad experience with open heart surgery 4 years ago. I spent a month in a coma following surg. I am very scared of having another major surgery but I am more afraid of this time bomb exploding before they get it repaired. I hope I can learn to come to terms with it .

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drmpicardi | @drmpicardi | Mar 3 9:52am
In reply to @jsolem "I learned about having an aortic aneurysm about 3 yrs ago. Actually, at first it wasn’t..." + (show)
@jsolem

I learned about having an aortic aneurysm about 3 yrs ago. Actually, at first it wasn’t a concern as I believed I was doing all that my health-conscious self knew to do and was advised to just live my life fully and trust where life would take me. My last echo revealed that I was 5.5 so I knew that the best option was to just let go and let God. Truly, my sense of gratitude has expanded to the degree that my letting go has been practiced. I’ve come to an almost minute by minute awareness of the gifts of my life, despite a lot of very intense physical, emotional, spiritual, and psychological challenges which continue. As I have been having a lot of breathlessness, I began to explore more of what a rupture would look like. In doing so, my awareness began to focus more on what could be going wrong in the present. My anxiety and focus on death increased and I am now in the process of accepting both aspects of the living/dying reality. I am so curious and joyous with the possibility of a new life which I can hardly imagine, that my faith in God-in-me had given me peace, even as world events threaten with chaotic reactivity. I do hope you can trust life at its core within you and respond with gratitude and love in whatever stages you pass through. Many blessings❣️

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what a beautiful attitude. I should learn from you.

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sft11458 | @sft11458 | Mar 6 12:46pm
In reply to @terryb3582 "@malcorozan I know how unsettling it can be when you get news like you got from..." + (show)
@terryb3582

@malcorozan
I know how unsettling it can be when you get news like you got from your doctor.
Every case is different because people are different. The uncertainty was the hardest part for me to deal with but I realized quickly that the stress thinking about it was not going to help and more likely could make things worse.
What I did was to improve everything I possibly could that was in my control and then fully accept the things not under my control.
I got rid of (or limited) any toxic or negative people in my life. I put my body in the best shape I could to make it as healthy as possible in the event I needed surgery at any time. I researched and interviewed the best doctors and hospitals that I had access to in case I needed surgery and made sure people close to me knew my choices. I changed my eating habits and improved my diet and the foods I ate. I lost excess weight, (45lbs, but I'm 6'7" so I didn’t really look heavy), and adopted a doctor-approved exercise program. I also got "my affairs" in order to the extent possible.
I basically took a body, mind and soul approach. I learned how to meditate and focused on letting go of the things out of my control. I changed my approach (and response) to adversity and monitored my blood pressure to help train me to remain in a calmer state. But once I really accepted the fact that the things out of my control were truly out of my control, I finally accepted that the worry I had was really the only thing left in my control. And the worry was not helping my condition or state of mind. I finally, years later, went in for surgery and I felt a complete calmness on my way to the hospital, even as I was wheeled into surgery. I did everything I could to improve my outcome. It was out of my control now, except for my state of mind.
I hope you can find the peace that I found, that can be so elusive to people. I think of it as a healthy surrender.
Good luck!

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I’m a fairly healthy and fit 67 year old guy with a 5 cm ascending aortic aneurysm that’s been the same size for 5 years. It’s strange because my cardiologist never indicated to me that I seek the advice of a vascular surgeon. Well upon my own research I decided to follow up with a surgeon and early this year he recommended open heart surgery to repair/replace it. Since then I’ve spoken with two other surgeons at reputable institutions who recommended the same. I’m retired and have time to manage my life much better now but the fear of rupturing that has been seeded in my mind has me feeling reluctant to travel and enjoy my life. I’ve tried to distract myself but it doesn’t seem to work. Anyway, I feel great and surgery is intimidating; I too feel that I will surrender myself to a surgeon soon but it is an agonizing process for sure.

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moonboy | @moonboy | Mar 6 3:00pm

I suffered a complete aortic dissection at age 50 and 2015. I underwent two emergency open-heart surgeries to repair it. I understand your apprehension fully and completely, but I will tell you that your chance of surviving a sudden dissection are slim to none unless you happen to be in a major metropolitan area near a major surgical center with all of the various resources and expert thoracic surgeons in place to repair it.

If I knew then what I know now, I would have immediately had surgery if it was recommended by a thoracic surgeon. Cardiologists, are in my opinion, generally not qualified to make decisions about aortic health from the standpoint of a sudden rupture because they're not the ones who are going in there to fix it. I know you're on the fence and I know it's daunting, but here I am 10 years later telling you that I am thankful for every day I have on this earth and I also recognize that the likelihood that any person will survive a sudden dissection is small. Peace.

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seasidesandy1 | @seasidesandy1 | Mar 10 11:23am
In reply to @terryb3582 "@malcorozan I know how unsettling it can be when you get news like you got from..." + (show)
@terryb3582

@malcorozan
I know how unsettling it can be when you get news like you got from your doctor.
Every case is different because people are different. The uncertainty was the hardest part for me to deal with but I realized quickly that the stress thinking about it was not going to help and more likely could make things worse.
What I did was to improve everything I possibly could that was in my control and then fully accept the things not under my control.
I got rid of (or limited) any toxic or negative people in my life. I put my body in the best shape I could to make it as healthy as possible in the event I needed surgery at any time. I researched and interviewed the best doctors and hospitals that I had access to in case I needed surgery and made sure people close to me knew my choices. I changed my eating habits and improved my diet and the foods I ate. I lost excess weight, (45lbs, but I'm 6'7" so I didn’t really look heavy), and adopted a doctor-approved exercise program. I also got "my affairs" in order to the extent possible.
I basically took a body, mind and soul approach. I learned how to meditate and focused on letting go of the things out of my control. I changed my approach (and response) to adversity and monitored my blood pressure to help train me to remain in a calmer state. But once I really accepted the fact that the things out of my control were truly out of my control, I finally accepted that the worry I had was really the only thing left in my control. And the worry was not helping my condition or state of mind. I finally, years later, went in for surgery and I felt a complete calmness on my way to the hospital, even as I was wheeled into surgery. I did everything I could to improve my outcome. It was out of my control now, except for my state of mind.
I hope you can find the peace that I found, that can be so elusive to people. I think of it as a healthy surrender.
Good luck!

Jump to this post

Your comments helped me immensely. My descending AAA is unique due to a curved aorta caused by scoliosis. I was diagnosed with a small AAA about twenty years ago that now measures 5.9 mm, so this is no surprise. Am being followed every 6 months at Mayo Clinic.

Two surgeries are recommended, one extremely lengthy and complex (See previous comment under “Anyone else not having surgery?”). I’m on a fine line deciding whether to go forward with these surgeries at 80 years old with numerous health issues or live my life positively and “let go” of stress this decision is causing me. I do appreciate every day given
to me.

I am active, independent, and have a great support group of
family, friends, and physicians. Am enjoying my retirement living alone and quality of life is very important to me. Unknown outcome for number of quality life years remaining after two surgeries is unknown.

Huge decision….

Thank you so much!

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1 reply
evelynadkins | @evelynadkins | 1 day ago

84year, female,,have a 5.1 root aorta aneurysm, and a 4.4 ascending aneurysm, my overall health is very good. Is surgery an option? I'm not afraid of the risks. Also is short of breath a symptom? And dizziness. Thank you all

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