Aortic Aneurysm Repair Success Stories

Posted by rphiller @rphiller, Nov 25, 2024

Good morning all,
I joined this group after being diagnosed with a 4.9cm AAA. Finding this out has been the scariest and most anxiety filled 3 weeks of my life. Reading through these discussions, it's very apparent that most every one is in the same boat as me. With that being said, I think it'd be awesome to hear all of the success stories from individuals that had surgery to repair the aneurysm and are continuing to live life.

God Bless and we are all in this together!

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

@jimg56

Hi,
Anxiety was never a thing for me.
Now it’s trying to rule my life. I was always strong, fearless and not much anxiety to speak of. I had a panic attack in my drs office. What a horrible feeling.
I read something I will try to do daily.
What you tell your body, your body responds to so i am going to tell my body that I am the boss, I am happy and I am in charge and everything is fine. I am happy and strong and i will move on! I hope my body believes me… ❤️We got this !!!
Let’s take charge.

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This is exactly how I was when I was diagnosed, unfortunately my daughter at 4 days old had to have a balloon operation done. While we were in recovery with her, one of the doctors -who found out I have aortic stenosis and have not been following it - made me an appointment to get an echo done. They found the 5.1cm aneurysm but didn't have me scheduled for a follow up from a cardiologist. They uploaded the findings on their portal and I happened to look at the results. When I came across the severe aortic aneurysm on the report I immediately googled it and may have been the worst decision I have made - I had never felt that amount of stress enter my body... I wasn't able to speak to a cardiologist for 24 hours where she was able to relieve some stress and anxiety by talking with me. So I am willing to take any and all advice on how to continue to live life.

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@rphiller

This is exactly how I was when I was diagnosed, unfortunately my daughter at 4 days old had to have a balloon operation done. While we were in recovery with her, one of the doctors -who found out I have aortic stenosis and have not been following it - made me an appointment to get an echo done. They found the 5.1cm aneurysm but didn't have me scheduled for a follow up from a cardiologist. They uploaded the findings on their portal and I happened to look at the results. When I came across the severe aortic aneurysm on the report I immediately googled it and may have been the worst decision I have made - I had never felt that amount of stress enter my body... I wasn't able to speak to a cardiologist for 24 hours where she was able to relieve some stress and anxiety by talking with me. So I am willing to take any and all advice on how to continue to live life.

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Wow! Good thing you read your report. It's surprising and scary that no one had you scheduled for a followup with an expert.

I'm equally surprised that you were able to speak with a cardiologist within 24 hours. After being diagnosed with an aneurysm and a CAC score of close to 600 (98th percentile for my age and gender) from the same test, I wasn't able to see anyone for weeks. I was in the camp of "I did everything right and thought I was healthy." I used to joke with my spouse that I think I have health PTSD from reading that report.

This heart stuff moves at a snail's pace. The health system is so overloaded, and while it seems like an emergency to us, it's not really in most cases. I just wish there was capacity in the system for someone to spend a little time explaining things immediately after the diagnosis. Are we supposed to just not read the reports? Your case is a fantastic example of why that's not a good idea. Oof.

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@rphiller

This is exactly how I was when I was diagnosed, unfortunately my daughter at 4 days old had to have a balloon operation done. While we were in recovery with her, one of the doctors -who found out I have aortic stenosis and have not been following it - made me an appointment to get an echo done. They found the 5.1cm aneurysm but didn't have me scheduled for a follow up from a cardiologist. They uploaded the findings on their portal and I happened to look at the results. When I came across the severe aortic aneurysm on the report I immediately googled it and may have been the worst decision I have made - I had never felt that amount of stress enter my body... I wasn't able to speak to a cardiologist for 24 hours where she was able to relieve some stress and anxiety by talking with me. So I am willing to take any and all advice on how to continue to live life.

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Wow..I completely understand. Anyone would have anxiety. It would be hard not to be anxious. I am sorry you are going through this.
Talking helps tremendously.
It is a scary thing when drs dont tell you everything.
We have been going through some stuff with drs taking more time then they should with treatments.
For cancer. You really need to be on top of your own care. It is stressful
Do what works for your mental health. ❤️

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@rphiller

This is exactly how I was when I was diagnosed, unfortunately my daughter at 4 days old had to have a balloon operation done. While we were in recovery with her, one of the doctors -who found out I have aortic stenosis and have not been following it - made me an appointment to get an echo done. They found the 5.1cm aneurysm but didn't have me scheduled for a follow up from a cardiologist. They uploaded the findings on their portal and I happened to look at the results. When I came across the severe aortic aneurysm on the report I immediately googled it and may have been the worst decision I have made - I had never felt that amount of stress enter my body... I wasn't able to speak to a cardiologist for 24 hours where she was able to relieve some stress and anxiety by talking with me. So I am willing to take any and all advice on how to continue to live life.

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At 5.1 cm I would talk to a Thoracic surgeon, mine was 5.2 when they found it while having leg fracture surgery, the surgeon saw me a few days after I left the hospital (different hospital), he recommended I had the aneurysm repaired as soon as I could walk some from my leg surgery, 3 months later I had it done, longest 3 months of my life, I wanted that thing gone. I was 54 in good physical health, out of the hospital in 5 days back to work in 3 weeks.

All measurements said 5.2 but the surgeon told me it was larger when he removed it.

I also have a bicuspid aortic valve (contributed to the aneurysm) and we talked about the possibility of replacing it, but the surgeon found it to be highly functional and told me my natural valve is better than any artificial valve he could have installed. I will need to have it replaced at some point maybe 10 years or so, but now it can be done through catheter.

Keep yourself healthy, stay active but not overexert, treat your body well, find the best surgeon you can find and a cardiologist who specializes in aneurysms, hopefully from the same team, it made a huge difference for me. 5 years later I am doing incredibly well, working out regularly, enjoying life with my family.

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@bitsygirl

Wow! Good thing you read your report. It's surprising and scary that no one had you scheduled for a followup with an expert.

I'm equally surprised that you were able to speak with a cardiologist within 24 hours. After being diagnosed with an aneurysm and a CAC score of close to 600 (98th percentile for my age and gender) from the same test, I wasn't able to see anyone for weeks. I was in the camp of "I did everything right and thought I was healthy." I used to joke with my spouse that I think I have health PTSD from reading that report.

This heart stuff moves at a snail's pace. The health system is so overloaded, and while it seems like an emergency to us, it's not really in most cases. I just wish there was capacity in the system for someone to spend a little time explaining things immediately after the diagnosis. Are we supposed to just not read the reports? Your case is a fantastic example of why that's not a good idea. Oof.

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I'm really thankful that my daughter's doctor basically forced me to get the echo done. Now I just have to wait for the referral to Mayo in Rochester to go through so I can see some specialists and really get the ball moving.

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@houston13

At 5.1 cm I would talk to a Thoracic surgeon, mine was 5.2 when they found it while having leg fracture surgery, the surgeon saw me a few days after I left the hospital (different hospital), he recommended I had the aneurysm repaired as soon as I could walk some from my leg surgery, 3 months later I had it done, longest 3 months of my life, I wanted that thing gone. I was 54 in good physical health, out of the hospital in 5 days back to work in 3 weeks.

All measurements said 5.2 but the surgeon told me it was larger when he removed it.

I also have a bicuspid aortic valve (contributed to the aneurysm) and we talked about the possibility of replacing it, but the surgeon found it to be highly functional and told me my natural valve is better than any artificial valve he could have installed. I will need to have it replaced at some point maybe 10 years or so, but now it can be done through catheter.

Keep yourself healthy, stay active but not overexert, treat your body well, find the best surgeon you can find and a cardiologist who specializes in aneurysms, hopefully from the same team, it made a huge difference for me. 5 years later I am doing incredibly well, working out regularly, enjoying life with my family.

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That's really good to know about your bicuspid aortic valve, mine is minor enough that if that were the only issue I had I'd only be seen once every other year. I was a little nervous that they'd want to repair the valve as well.

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@houston13

At 5.1 cm I would talk to a Thoracic surgeon, mine was 5.2 when they found it while having leg fracture surgery, the surgeon saw me a few days after I left the hospital (different hospital), he recommended I had the aneurysm repaired as soon as I could walk some from my leg surgery, 3 months later I had it done, longest 3 months of my life, I wanted that thing gone. I was 54 in good physical health, out of the hospital in 5 days back to work in 3 weeks.

All measurements said 5.2 but the surgeon told me it was larger when he removed it.

I also have a bicuspid aortic valve (contributed to the aneurysm) and we talked about the possibility of replacing it, but the surgeon found it to be highly functional and told me my natural valve is better than any artificial valve he could have installed. I will need to have it replaced at some point maybe 10 years or so, but now it can be done through catheter.

Keep yourself healthy, stay active but not overexert, treat your body well, find the best surgeon you can find and a cardiologist who specializes in aneurysms, hopefully from the same team, it made a huge difference for me. 5 years later I am doing incredibly well, working out regularly, enjoying life with my family.

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What did you do to mentally prepare yourself for having a major surgery like this? For me it's the mental aspect of the procedure. I understand that the success rates for these procedures are very high especially when done with a qualified surgeon/team. But the whole thing still scares me. I've also never had any sort of surgical procedure done other than having my wisdom teeth out which may be leading to some of my fears.

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@rphiller

What did you do to mentally prepare yourself for having a major surgery like this? For me it's the mental aspect of the procedure. I understand that the success rates for these procedures are very high especially when done with a qualified surgeon/team. But the whole thing still scares me. I've also never had any sort of surgical procedure done other than having my wisdom teeth out which may be leading to some of my fears.

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Honestly in my case the thought of having a time bomb in my chest squashed any fear I could have had about the surgery, I made peace with myself and my loved ones and just kept looking forward to having the procedure done, I thought it would be over fast and I would deal with the recovery (I was already recoverying from leg fracture surgery so I would just tag the recoveries along), or something would go wrong and I wouldn't even know about it. I just wanted the aneurysm gone, especially knowing it was large enough to give me a surprise.

Of course I was nervous as the wheeled me into surgery, joked a litle with the surgery team and I was knocked out pretty fast.

Post surgery is tough, but bearable, now it is just a memory for me.

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@houston13

Honestly in my case the thought of having a time bomb in my chest squashed any fear I could have had about the surgery, I made peace with myself and my loved ones and just kept looking forward to having the procedure done, I thought it would be over fast and I would deal with the recovery (I was already recoverying from leg fracture surgery so I would just tag the recoveries along), or something would go wrong and I wouldn't even know about it. I just wanted the aneurysm gone, especially knowing it was large enough to give me a surprise.

Of course I was nervous as the wheeled me into surgery, joked a litle with the surgery team and I was knocked out pretty fast.

Post surgery is tough, but bearable, now it is just a memory for me.

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Did they replace yours with a Dacron graft? (I believe is the name) What has follow up been like? Are you having echo's or ct's yearly or every 6 months?

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@rphiller

Did they replace yours with a Dacron graft? (I believe is the name) What has follow up been like? Are you having echo's or ct's yearly or every 6 months?

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Yes a graft, I believe it is Dacron as you say (they showed it to me before and it is a fabric like graft), I get an echocardiogram every year to mainly monitor my valve function but they also look at the graft. I also get a full body MRI (groin, abdomen, chest and head) every 4-5 years to ensure no new aneurysms are appearing (there is a propensity in my family, I also had a brain aneurysm which was repaired too). I find my cardiologist to be incredibly thorough and knowledgeable, the man is an expert in aortic diseases and aneurysms in general, and also a geneticist so he had my family enrolled in a genetic study to see if we have an unknown marker for aneurysms (he had both of my kids checked, heart and brain) that is why I say it makes such a difference to have a cardiologist that specializes in the subject, I feel lucky to have him

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