"Aneurysm Thoracic Aortic Without Rupture"?

Posted by sofaramnotdead @sofaramnotdead, Sep 5 5:40pm

For around 5 years, some Mayo physicians have monitored my aneurysm above. I also have an artificial heart valve.

Suddenly, a couple of years ago my Mayo physicians said that there is no reason for me to be seen regularly by a cardiologist.

I was told that Mayo has to devote equal time to all of their heart patients, and that's why they can't do an MRI or an echocardiogram, unless I'm having symptoms that need to be addressed.

Is anyone else here in a situation like mine?

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

@sofaramnotdead, it sounds like you're feeling anxious about transferring heart health care to your primary care physician. I can imagine after being monitored regularly by Mayo cardiology this may leave you feeling untethered. But is this perhaps a milestone to be celebrated? Your condition appears to be stable and well managed. That's good.

Do you have confidence in your primary care physician to monitor your heart health? Are clear on symptoms to watch for?

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Thanks.
I have confidence in my primary care doctor, who I think is the best one that Mayo has. But I think he’s overworked. I base this on him once telling me that he has so many messages to answer that “it’s a bit overwhelming, to be honest.” He’s not normally someone who would complain about anything, ever. He’s just doing what Mayo wants him to do, so I have nothing but admiration for him.

With an aortic aneurysm, my understanding is that there are no symptoms that a patient would be aware of. By the time there are, my guess is that the ruptured aorta would be potentially fatal. I don’t see any way that the patient could get to the operating room in time.

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@sofaramnotdead

Thanks.
I have confidence in my primary care doctor, who I think is the best one that Mayo has. But I think he’s overworked. I base this on him once telling me that he has so many messages to answer that “it’s a bit overwhelming, to be honest.” He’s not normally someone who would complain about anything, ever. He’s just doing what Mayo wants him to do, so I have nothing but admiration for him.

With an aortic aneurysm, my understanding is that there are no symptoms that a patient would be aware of. By the time there are, my guess is that the ruptured aorta would be potentially fatal. I don’t see any way that the patient could get to the operating room in time.

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I can see that you are concerned about physician burnout and your care. You may consider bringing this issue to the Office of Patient Experience. Hearing from patients matters. I encourage you to contact them:
Mayo Clinic Office of Patient Experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

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I have my aortic aneurism check yearly to see if it has enlarged.
Mine is 3.0cm.
Alarms go off it it gets to 5cm.
Mine has not changed since discovered in 2018.
Main thing is to keep your BP normal.

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I was first diagnosed with an ascending aortic aneurysm this past January and just had my 6 month follow-up echo and CT. Luckily there was no change, 43mm, and my valves are all good.

I asked the cardiac surgeon if it was time for me to get a cardiologist and he said not unless I am having any other heart related symptoms, which I am not.

I'll do one more 6 month follow-up and if there is no change we will go to an annual check. At 5cm it will be time to talk surgery. Hopefully the beta-blocker the surgeon put me on in addition to my bp medication will keep me stable. I do miss weight-training, but for now it's a no-go.

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This sounds very strange to me. It is not good. I can understand your concern and I hope you can find out what the reasons could possibly be. I have been a patient at "Mother Mayo" since about 1990 and this would be very unusual unless a patient made a miraculous recovery and no longer needed specialty care. I can see referring you to another cardiologist but not primary care – not with a valve and an aneurysm,
Have you been seen in Cardiology at Mother Mayo or at one of the Mayo Health System satellites? It is possible that policies and procedures at a satellite may be different than at Mother Mayo.
I ask this because you mentioned primary care, which has not been available to most patients at Mother Mayo since about 2015. The exceptions may be former Mayo staff members and maybe other patients for whom they feel primary care/internal medicine is medically necessary and appropriate.
Please keep us posted. I second the suggestion to see the patient advocate for the satellite where you get care or at Mother Mayo.

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UPDATE: I recently went to see a vascular physician at Mayo, and he showed me an echocardiogram that was done exactly one year ago at Mayo! If I had known that, I wouldn't have been complaining so much about lack of attention from a cardiologist.

I guess it's on patient info that Mayo has, but which are not all available on our personal patient portals.
He said that my aortic aneurysm looked okay, that there had been no recent enlargement of it, and that I should be checked again in one year.

So, that is nice to hear. But what I am trying to do is learn more about my situation, so that I don't have to rely on cardiologists to interpret my echocardiogram results. Just before seeing this vascular physician at Mayo, I had called the Olmsted Medical Center, which I've never been to, and they said that if I wanted to see a primary care physician there, then the OMC primary care physician would determine if I could have my heart "checked" over there.

I told them that sometime between now and this time next year I'll call them back if I need help.

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I’m 56 and was diagnosed with a 4.5cm Ascending aortic aneurysm a year ago. I lost a neighbor suddenly due to aortic dissection, so I took it on myself to get a CT scan. No symptoms and without the blessing of my insurance co. The rest of my heart is in pretty good shape. Shortly after diagnosis, I retired and made significant changes to my diet and stopped lifting completely. It’s been a year and I went into my follow up CT Scan last week convinced the best result would have been an increase of 2 mm because I didn’t believe I’d done enough to improve my exercise or even my diet. My primary started me on 25 mg of Lasorton, but since my BP wasn’t averaging below 115/80, I pushed to get it increased to 50, then eventually 100mg. Surprisingly enough, my follow up scan showed NO change in size with my aneurysm! I was initially thrilled! Like you though, I wondered if my yearly scans would continue. Can you share your age and aneurysm size please?

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@dwander501

I’m 56 and was diagnosed with a 4.5cm Ascending aortic aneurysm a year ago. I lost a neighbor suddenly due to aortic dissection, so I took it on myself to get a CT scan. No symptoms and without the blessing of my insurance co. The rest of my heart is in pretty good shape. Shortly after diagnosis, I retired and made significant changes to my diet and stopped lifting completely. It’s been a year and I went into my follow up CT Scan last week convinced the best result would have been an increase of 2 mm because I didn’t believe I’d done enough to improve my exercise or even my diet. My primary started me on 25 mg of Lasorton, but since my BP wasn’t averaging below 115/80, I pushed to get it increased to 50, then eventually 100mg. Surprisingly enough, my follow up scan showed NO change in size with my aneurysm! I was initially thrilled! Like you though, I wondered if my yearly scans would continue. Can you share your age and aneurysm size please?

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You might want to ask your physician about a beta blocker. My thoracic surgeon explained the difference between the bp medication and a beta blocker. The bp medication softens the blood vessels, like way you finger on a water hose can increase or decrease the pressure of the water flowing out. The beta blocker lessens the flow of the water, like turning down the amount of water with the faucet control. With the beta blocker your heart rate slows. Now when I exercise my heart rate just doesn't get as high. That's less pressure on the aorta.

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@mermaid1

You might want to ask your physician about a beta blocker. My thoracic surgeon explained the difference between the bp medication and a beta blocker. The bp medication softens the blood vessels, like way you finger on a water hose can increase or decrease the pressure of the water flowing out. The beta blocker lessens the flow of the water, like turning down the amount of water with the faucet control. With the beta blocker your heart rate slows. Now when I exercise my heart rate just doesn't get as high. That's less pressure on the aorta.

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I really appreciate your suggestion! I've seen numerous mentions of beta blockers since my diagnosis and I've questioned my Cardiologist more than once about them. His last response was that he didn't think the risk of possible side affects was worth it at this point. Based on my amateur knowledge, I disagree. I worry sometimes that our physicians are so confident in their ability to successfully repair the aorta, that some may forget that the patient's goal is to prevent the need for surgery!!! lol I have a follow up in a few weeks. I'm planning to lock the door until he satisfies my curiosity on beta blockers.
Thanks so much for your input.
Darren

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@sofaramnotdead

UPDATE: I recently went to see a vascular physician at Mayo, and he showed me an echocardiogram that was done exactly one year ago at Mayo! If I had known that, I wouldn't have been complaining so much about lack of attention from a cardiologist.

I guess it's on patient info that Mayo has, but which are not all available on our personal patient portals.
He said that my aortic aneurysm looked okay, that there had been no recent enlargement of it, and that I should be checked again in one year.

So, that is nice to hear. But what I am trying to do is learn more about my situation, so that I don't have to rely on cardiologists to interpret my echocardiogram results. Just before seeing this vascular physician at Mayo, I had called the Olmsted Medical Center, which I've never been to, and they said that if I wanted to see a primary care physician there, then the OMC primary care physician would determine if I could have my heart "checked" over there.

I told them that sometime between now and this time next year I'll call them back if I need help.

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This is really good news – I didn't think Mayo would leave you out there alone without a good reason.

You wrote, "But what I am trying to do is learn more about my situation, so that I don't have to rely on cardiologists to interpret my echocardiogram results" – and I chuckled. I have a thyroid nodule that has been "watched" for over 20 years, and at times the endocrinologist is in no hurry to get back to me to explain the results, even though I can see the test & radiology report on my portal. So, a few years ago, I asked the same question – and she laughed at me. She asked if I would like to do a 3 month "radiology rotation" as part of my medical residency – that's what she had to do to learn how to interpret the scans & images.

Just something to ponder – I for one will just try to learn a little patience.
Sue

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@dwander501

I’m 56 and was diagnosed with a 4.5cm Ascending aortic aneurysm a year ago. I lost a neighbor suddenly due to aortic dissection, so I took it on myself to get a CT scan. No symptoms and without the blessing of my insurance co. The rest of my heart is in pretty good shape. Shortly after diagnosis, I retired and made significant changes to my diet and stopped lifting completely. It’s been a year and I went into my follow up CT Scan last week convinced the best result would have been an increase of 2 mm because I didn’t believe I’d done enough to improve my exercise or even my diet. My primary started me on 25 mg of Lasorton, but since my BP wasn’t averaging below 115/80, I pushed to get it increased to 50, then eventually 100mg. Surprisingly enough, my follow up scan showed NO change in size with my aneurysm! I was initially thrilled! Like you though, I wondered if my yearly scans would continue. Can you share your age and aneurysm size please?

Jump to this post

Stopped lifting? Many athletes have a slightly larger number than the average couch Potatoe. I would watch the medication, many of the doctors over medicate. Make sure you know the lone term/short term side effects and their interactions with other medications of all the medication you take. I'm on my third cardiologist. Two of them overdosed me with a low-flow TIA. There are many natural supplements that will help with BP. The FDA just approved magnesium for hypertension.

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