Early surgery: Can I get aortic aneurysm repair before it's 5.0?

Posted by ontogenyx @ontogenyx, Sep 26, 2020

I have a 4.1 ascending aortic aneurysm, and my local cardiologist tells me what every other one tells me, including Cleveland Clinic and Mayo. No surgery considered until 5.0, if valves are in good shape (mine are, except for 5% regurgitation).

The rationale offered for waiting: the risk of the surgery is greater than the risk of an event resulting from the aneurysm before it reaches 5.0. Meanwhile, I am told to limit myself to moderate exercise and to take drugs, in hopes of slowing growth of aneurysm.

I will be 71 next month, in good health, and very active. I am more interested in getting the repair done now so that I can resume a full life, rather than waiting around until I get feeble and less likely to have a good result when they eventually open me up for repair. I am much more willing to accept the risk of the surgery now than I will be 10 years down the road. I know, I know–it might never even require surgery–in which case, I can continue my life of "moderate exercise" until my number is finally up. Not interested.

Does anyone know a top surgeon who is willing to talk with me about getting this done now or in the near future?

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

@dwander501

The next phase of my research is going to be natural things I can purchase to strengthen my blood vessels. I figure I’ll give it my best shot to prolong the inevitable surgery!

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Did you gain any useful information from the Mayo article on beta-blockers, @dwander501? Are you currently taking that kind of BP med?

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I’m not on any of those meds. I planning to read the article while I’m on the plan later tonight. Just on our way to the airport. I’m a sponge for information so I’m sure it’ll be helpful. I’m pretty underwhelmed by my primary physician and the first Cardiologist I’ve met with though. No mention of Beta blockers , I had to suggest the follow up echocardiogram and ultrasound, and I made the suggestion to increase my bp meds. I understand they all want me to remain calm, but the only way that will happen is if I’m provided every slice of information available.

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@hopeful33250

Hello @dwander501 and welcome to Mayo Clinic Connect. Your concern over the aortic aneurysm is certainly understandable and your search for the best opinion possible is important. You are wise to research and get other opinions.

You asked about "beta-blockers" which are one type of blood pressure medicine that also slows the heart rate. Here is some information on beta-blockers from Mayo Clinic's website, https://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/beta-blockers/art-20044522. Perhaps you will see the name of your current BP med listed here.

From what you have posted, I understand that you have no symptoms at this time. Is that correct?

If you are comfortable sharing more, what BP med are you currently taking? Do you have a family history of aneurysms?

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Thanks for the link on beta blockers. I’ll follow up with my Cardiologist to see if he recommends them.

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@dwander501

Can you tell me more about this “beta blocker”. They’ve not mentioned it to me. Thanks very much !

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I've been taking 80 mg a day of Valsartin for years. This week I started 12.5 mg of Metoprolol Tartrate twice a day. I don't really notice any difference but I'm going to track my hear rate and BP next week.

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@mermaid1

I'm in the same situation. After 2 friends died, I had a CT scan on my own dime and they found 4.3cm ascending aortic aneurysm. The surgeon also told me the risk ratio was against surgery now. He added a Beta blocker to my existing BP medication and said no heavy lifting, no more heavy weight lifting workouts, etc. I hate the idea of this ticking time bomb in my chest, but am just beginning to research options besides annual CT and echo while waiting for it get bigger. I absolutely don't want to need surgery in 20 years when I'm 80. I just came across an alternative weight lifting called the one hundred that sounds safer, but is going to take a lot to adjust to. Let me know if you come across anything interesting.

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Do you mean the friends who died (presumably from a burst aneurysm) had aneurysms below the recommended-for-surgery level?

Or even that they hadn't known they had an aneurysm at all? Why did you have the self-pay CT scan? Because you didn't trust your docs' measurements or because their testing intervals were too far apart to make you feel safe in your present measurements?

Not really pertinent, but a personal anecdote – my ex-husband just passed away two months ago from a burst aneurysm. In his case, he knew very well he was past medical recommendations (a reputable local hospital and the Cleveland Clinic. had told him he was in great danger owing to the size of his aneurysm, but he just didn't have the nerve – afraid he's die in surgery.) Finally, his wife ramped up the pressure and he returned to the Cleveland Clinic, which lined up surgery for two weeks after that date (I think they insisted he stop smoking for that period). Whatever, not far from the Clinic while returning home to wait, he collapsed while filling his tank with fuel.

Before this, I was ignorant about this condition – now I've read a good bit including this online conversation. I have tremendous sympathy for you sufferers. The surgery really is a terrifying "Damocles Sword" to have hanging over your heads – also pre-surgery, quality of life-limiting, to never know what activity level is safe.

I'm glad you can support each other here. Perhaps if he'd been a member, he could have been reassured enough to go through with surgery despite the risks. Also to quit smoking at least before the operation. My sons were of course told to be checked. Without such recommendations, how else do people get the diagnosis? It's not that common a condition.

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@realitytest

Do you mean the friends who died (presumably from a burst aneurysm) had aneurysms below the recommended-for-surgery level?

Or even that they hadn't known they had an aneurysm at all? Why did you have the self-pay CT scan? Because you didn't trust your docs' measurements or because their testing intervals were too far apart to make you feel safe in your present measurements?

Not really pertinent, but a personal anecdote – my ex-husband just passed away two months ago from a burst aneurysm. In his case, he knew very well he was past medical recommendations (a reputable local hospital and the Cleveland Clinic. had told him he was in great danger owing to the size of his aneurysm, but he just didn't have the nerve – afraid he's die in surgery.) Finally, his wife ramped up the pressure and he returned to the Cleveland Clinic, which lined up surgery for two weeks after that date (I think they insisted he stop smoking for that period). Whatever, not far from the Clinic while returning home to wait, he collapsed while filling his tank with fuel.

Before this, I was ignorant about this condition – now I've read a good bit including this online conversation. I have tremendous sympathy for you sufferers. The surgery really is a terrifying "Damocles Sword" to have hanging over your heads – also pre-surgery, quality of life-limiting, to never know what activity level is safe.

I'm glad you can support each other here. Perhaps if he'd been a member, he could have been reassured enough to go through with surgery despite the risks. Also to quit smoking at least before the operation. My sons were of course told to be checked. Without such recommendations, how else do people get the diagnosis? It's not that common a condition.

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I can only speak for myself but I could not have waited if given a choice . Living not knowing when or if it might rupture would have been to scary knowing that if it ruptured I would only live approximately 15 minutes . Which is why it is referred to as a widow maker. I agree it is very important that you advise your children and siblings to be checked for aneurysms as it is generic.

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@mermaid1

I've been taking 80 mg a day of Valsartin for years. This week I started 12.5 mg of Metoprolol Tartrate twice a day. I don't really notice any difference but I'm going to track my hear rate and BP next week.

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@mermaid1 I hope this will create a link so you see my post below with questions directed to you, It's pretty far down, so if notified
I wrote please scroll. Thank you!

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I had a aortic arch/descending aortic aneurysm. I agree it is stressful knowing it is there. However, it’s also a blessing. Most of us probably had it for years and we’re not aware- once it is discovered it can be closely monitored and watched. Not knowing about them- we are unable to take precautions and alter our daily activities to avoid terrible events from occurring. With my aortic aneurysm I also found a larger subclavian aneurysm- I did have to have mine all repaired- but for the months I knew about them all I could think about was how fortunate I was that it was actually even discovered. Mine were probably there for years my doctors said- in that time I delivered 2 babies, worked a physically demanding job, basically lived my life where there were so many opportunities for something to happen. So when I found mine I just cried that it was found in time to repair. I was lucky to have been immediately referred to Mayo because my cardiologist was not comfortable treating me. I highly recommend if you feel your cardiologist is not taking your case seriously enough or really in any case- seek a second opinion. It’s your body your health and taking control of that can help you feel some kind of control over this. While there are different aneurysms and different recommendations it is is important to find a physician you trust and knows your case. I also wore a medical bracelet all the time until my repair to help me get care faster in case of an emergency- it just gave me a sense of comfort having it on. Little things like that helped me manage my fears. Best wishes to all!

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@realitytest

Do you mean the friends who died (presumably from a burst aneurysm) had aneurysms below the recommended-for-surgery level?

Or even that they hadn't known they had an aneurysm at all? Why did you have the self-pay CT scan? Because you didn't trust your docs' measurements or because their testing intervals were too far apart to make you feel safe in your present measurements?

Not really pertinent, but a personal anecdote – my ex-husband just passed away two months ago from a burst aneurysm. In his case, he knew very well he was past medical recommendations (a reputable local hospital and the Cleveland Clinic. had told him he was in great danger owing to the size of his aneurysm, but he just didn't have the nerve – afraid he's die in surgery.) Finally, his wife ramped up the pressure and he returned to the Cleveland Clinic, which lined up surgery for two weeks after that date (I think they insisted he stop smoking for that period). Whatever, not far from the Clinic while returning home to wait, he collapsed while filling his tank with fuel.

Before this, I was ignorant about this condition – now I've read a good bit including this online conversation. I have tremendous sympathy for you sufferers. The surgery really is a terrifying "Damocles Sword" to have hanging over your heads – also pre-surgery, quality of life-limiting, to never know what activity level is safe.

I'm glad you can support each other here. Perhaps if he'd been a member, he could have been reassured enough to go through with surgery despite the risks. Also to quit smoking at least before the operation. My sons were of course told to be checked. Without such recommendations, how else do people get the diagnosis? It's not that common a condition.

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I have no symptoms but chose to have a CT scan, that insurance won't pay for, because friends died suddenly, not because they had aneurysms. When friends die suddenly in their 50s you feel your own mortality.

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@mermaid1

I have no symptoms but chose to have a CT scan, that insurance won't pay for, because friends died suddenly, not because they had aneurysms. When friends die suddenly in their 50s you feel your own mortality.

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Wow! That certainly IS young. Is a CT scan the usual way to check for aneurysms? How else do people find out?

My ex-husband died suddenly of a burst aneurysm a few months ago, and our sons were advised to be checked for aneurysms. I hope their insurance covers a. CT scan on grounds of their being hereditary high-risk.

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