1. < Aortic Aneurysms

"Aneurysm Thoracic Aortic Without Rupture"?

Posted by surreal name @sofaramnotdead, Sep 5, 2022

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 Support Group.

Mentor
Sue, Volunteer Mentor | @sueinmn | Sep 8, 2022
In reply to @sofaramnotdead "UPDATE: I recently went to see a vascular physician at Mayo, and he showed me an..." + (show)
@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

REPLY
hollywoodal | @hollywoodal | Sep 9, 2022
In reply to @dwander501 "I’m 56 and was diagnosed with a 4.5cm Ascending aortic aneurysm a year ago. I lost..." + (show)
@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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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.

REPLY
2 replies
hsminc | @hsminc | Sep 9, 2022
In reply to @dwander501 "I’m 56 and was diagnosed with a 4.5cm Ascending aortic aneurysm a year ago. I lost..." + (show)
@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 should push to have your yearly scans continued. These ascending thoracic aortic aneurysms tend to grow slowly but they DO grow; unless you die of something else, the probability is very high that you will need surgery in the future. Literature from the Cleveland Clinic indicate they grow about .07 cm a year but the range varies. It is not wise to discontinue scans.
That said, Losartan at 100 mg is good. We could not keep my husband's blood pressure under 120/80 when he was taking 50 mg twice a day plus a low dose beta blocker (25 mg). The 25 and 50 mg are short acting. The 100 mg will last 24 hours. I found this information in an article on PUBMED. When I mentioned this to my husband's primary care doctor, he looked at me with his eyes wide and said: "I never thought of that but, of course, the kinetics make sense."

REPLY
1 reply
dwander501 | @dwander501 | Sep 9, 2022
In reply to @hsminc "You should push to have your yearly scans continued. These ascending thoracic aortic aneurysms tend to..." + (show)
@hsminc

You should push to have your yearly scans continued. These ascending thoracic aortic aneurysms tend to grow slowly but they DO grow; unless you die of something else, the probability is very high that you will need surgery in the future. Literature from the Cleveland Clinic indicate they grow about .07 cm a year but the range varies. It is not wise to discontinue scans.
That said, Losartan at 100 mg is good. We could not keep my husband's blood pressure under 120/80 when he was taking 50 mg twice a day plus a low dose beta blocker (25 mg). The 25 and 50 mg are short acting. The 100 mg will last 24 hours. I found this information in an article on PUBMED. When I mentioned this to my husband's primary care doctor, he looked at me with his eyes wide and said: "I never thought of that but, of course, the kinetics make sense."

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Thanks so much for your comments. Yes, I agree on continuing my yearly scans whether my insurance pays for them or not! I was splitting the 100 up to 50 early am and 50 late afternoon, but found taking the full 100 in the am brought my blood pressure under control throughout the day. I usually have a banana early in the evening too. I know I can do better with eating and activity going forward and plan to as if my latest scan wasn’t as good as it was. Take care.

REPLY
mermaid1 | @mermaid1 | Sep 10, 2022
In reply to @hollywoodal "Stopped lifting? Many athletes have a slightly larger number than the average couch Potatoe. I would..." + (show)
@hollywoodal

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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No heavy lifting where there is straining. That's pretty standard recommendation for anyone with an aortic aneurysm. Low weight (below 30-50 lb depending on the Dr.) high rep is ok as long as you stop before straining for the last few reps. It also means no more hoisting my suitcase in the airplane overhead bin or pack-muling 70 lb of groceries up a flight of stairs. All that has been probably the most difficult adjustment for me.

I'm on a low dose beta-blocker and the pill is split into 1/2 in the am, half in the pm so that my heart rate and BP never get too low. My Dr. Says the risk for low flow TIA due to a sudden drop in BP is very unlikely with this dose and method.

REPLY
1 reply
hollywoodal | @hollywoodal | Sep 11, 2022
In reply to @mermaid1 "No heavy lifting where there is straining. That's pretty standard recommendation for anyone with an aortic..." + (show)
@mermaid1

No heavy lifting where there is straining. That's pretty standard recommendation for anyone with an aortic aneurysm. Low weight (below 30-50 lb depending on the Dr.) high rep is ok as long as you stop before straining for the last few reps. It also means no more hoisting my suitcase in the airplane overhead bin or pack-muling 70 lb of groceries up a flight of stairs. All that has been probably the most difficult adjustment for me.

I'm on a low dose beta-blocker and the pill is split into 1/2 in the am, half in the pm so that my heart rate and BP never get too low. My Dr. Says the risk for low flow TIA due to a sudden drop in BP is very unlikely with this dose and method.

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They had me on beta blocks for 6.5 years. First 3 mos. Metoprolol, after operation had bad side effects. Cardiologist ignored them. My HR before medication has always around 54. The beta blocker dropped it even lower. At 3 mos. had a low-flow TIA, cardiologist didn't even have the guts to show up. Surgeon took charge, ran test for three days then let me go home without prognosis. While in the hospital the internal medicine doctor overdosed me with medication. Her response was "That's why we like to do things in a controlled environment (^%$#@!). Second cardiologist overdosed me on Atenolol. 90s/40.s, HT 41, doctor ignored numbers even after years of complaint and documentation. Comment "We don't have time for that here, we're in a production mode." (^%$#@!) Wanted to try a pacemaker &^%$#@!. Got rid of him after second low-flow TIA. Next doctor took me off beta blocker immediately. Had to change hospitals. I can go on for pages. BE YOUR OWN ADVOCATE AND DO SOME RESEARCH> The internet saved my butt.

REPLY
1 reply
dwander501 | @dwander501 | Sep 14, 2022
In reply to @hollywoodal "Stopped lifting? Many athletes have a slightly larger number than the average couch Potatoe. I would..." + (show)
@hollywoodal

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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Thanks for your input. I just had my 1 year follow up CT scan last week. I haven't met with my Cardiologist yet post test, but I'm happy to report that my AAA is holding steady at 4.5cm. All other measurements around my heart were unchanged too. I'm happy, but I also know that I can improve on the exercise front and continue to eat better. I'm planning to ask again about beta blockers. 6 months ago, my Cardiologist said he wouldn't suggest it yet. Thanks for the Magnesium info.

REPLY
suz1950 | @suz1950 | Sep 15, 2022
In reply to @hollywoodal "They had me on beta blocks for 6.5 years. First 3 mos. Metoprolol, after operation had..." + (show)
@hollywoodal

They had me on beta blocks for 6.5 years. First 3 mos. Metoprolol, after operation had bad side effects. Cardiologist ignored them. My HR before medication has always around 54. The beta blocker dropped it even lower. At 3 mos. had a low-flow TIA, cardiologist didn't even have the guts to show up. Surgeon took charge, ran test for three days then let me go home without prognosis. While in the hospital the internal medicine doctor overdosed me with medication. Her response was "That's why we like to do things in a controlled environment (^%$#@!). Second cardiologist overdosed me on Atenolol. 90s/40.s, HT 41, doctor ignored numbers even after years of complaint and documentation. Comment "We don't have time for that here, we're in a production mode." (^%$#@!) Wanted to try a pacemaker &^%$#@!. Got rid of him after second low-flow TIA. Next doctor took me off beta blocker immediately. Had to change hospitals. I can go on for pages. BE YOUR OWN ADVOCATE AND DO SOME RESEARCH> The internet saved my butt.

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Totally agree with the advice to "BE YOUR OWN ADVOCATE AND DO SOME RESEARCH." I'm very happy with my cardiologist, especially because he always responds to my questions with, "...the latest guidelines recommend..."
That said, I think one of the most important parts of being your own advocate is to express your concerns in an assertive manner. For example, at my cardio visit a few days ago, I expressed concern about my blood pressure and asked him about a previous statement (also written in my chart) that my blood pressure needs to be kept "under reasonable control." "What do you consider, 'reasonable control,' and he responded as above with "...under 130 systolic."
I shared that again that I was very concerned and that very often, mine was above that--sometimes significantly. He then went on to further look into and discuss my current BP management and ended up prescribing a higher dose of my medication, with follow-up in 2 months. This was an example of when I felt I was advocating for myself and felt very good about it.

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virtuous69 | @virtuous69 | Oct 2, 2022

In my Husband's situation his aortic anurysm is a 4.7 and told cardiologist can"t operate til diameter is at least a 5 per Medicare. He just had lab work to see if his kidneys will tolerate an Ct scan with contrast. We hope to hear from our cardio doc next week as it's a worrisome watch and wait.

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purpleturtle | @purpleturtle | Oct 3, 2022

It has been 12 years since I got mechanical heart valve (not at Mayo). I see my cardiologist regularly, have a stress test every 2 years, an echo every year and a ctscan every year to check the heart valve and arteries. The only medication I take from him is Warfarin and cholesterol.

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