Besides managing BP, what else can slow the growth rate?

Posted by bryanfox @bryanfox, Mar 13 4:14pm

I'm a 48yo M, diagnosed in 2019 with an ascending aneurysm at 4.2-4.3. I have been getting regular scans and I thought it was not growing, but today my doctor told me that the last CT scan shows it at about 4.5. My BP is controlled (small dose of olmesartan), I don't smoke, I rarely drink, and I am fairly physically active. I'm 5'10" / 197lbs, so I could lose a bit of weight.

What bothered me was that the doctor basically said, "You're doing what you can, just come back at the end of the year for your next scan", like the growth is inevitable and unavoidable.

So that's my question - what else can I do to slow the growth? I know that sometimes this condition advances rapidly without apparent reason, but that (fortunately) doesn't seem to be the case for me - mine is progressing at around 1mm a year. Nonetheless, it feels like there SHOULD be something else to do to slow things down.

What am I missing?

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@jmc1951

You mention you met with an exercise physiologist. Is that different from a physical therapist? Did your cardiologist make the referral? What did the therapist help you with? Sounds like something that could be helpful to me as I navigate this new way of being. Thanks in advance.

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I saw the exercise physiologist during met appointment at Mayo- right after getting my tests done and meeting with the cardiologist. It is different than a physical therapist- this one specializes in heart care. I;ve all seen some good videos on you tube about exercise and heart issues

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@houston13

My AAA was discovered as I was being prepped for leg fracture surgery, fell of my MTB. Mine was already very large when found (5.2 and I am short 5' 6", 55 when it happened 4 years ago) and needed to be taken care of fairly soon. I had to wait while my leg healed enough for me to walk after heart surgery, but I kept working out, just that I had to take it way easy as any spike would have been catastrophic.

Even now after surgery, my Cardiologist tells me that there is a chance (small) the area of the aorta after the graft may swell and need to watch my BP. I work out frequently but as you, I use challenging weights but not excesive, and just do more reps. I'm also back on my MTB and do several spinning and strength classes every week. I practice proper breathing continually to ensure I am not holding my breath. I get check ups every year (Echo's) mainly to watch my aortic valve (bicuspid) but also the aorta itself, and get full scans every 5 years (groin, abdomen, torax and head) as I also had a brain aneurysm (also fixed).

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Do you happen to know if having an aortic aneurysms makes you more susceptible to other areas of the body such as the brain.?

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This is in reply to Bryan Fox: Is there anything more I can do to stop the growth.... I to have struggled with that question. My growth rate was measured at 4.4 (it was growing) and appears to have stabilized at a smaller 4.3. It was a Reassuring scan. I started taking collagen types 1 and 3, because I wanted to do "something". My BP is low, I have 0 CAD, I exercise regularly, no tobacco, and eat a plant based diet. I have been diagnosed with Familial TAAD. Its a good one to research for all with unexplained aneurysms. I do not have any of the known genetic markers, but that does not change my diagnosis of familial TAAD. There are numerous etiologies for ascending aneurysms, some of which can trigger aneurysms in other parts of the body, with only some showing the known genetic markers. As for me, I dont know if my collagen supplement makes any difference. It is a player in the integrity of the vascular wall and in the complex nitrous oxide exchange process, especially in some of the genetic anomalies associated with aneurysm disease. Too much for my brain! But this simple non-invasive daily act makes me feel a bit more in control. Plus my measurement appears to have stabilized after a year of using this supplement. So I plan to continue my behavioral interventions, including the supplement, and try to stay informed the best I can. However, everyone with an unexplained aneurysm should look up Familial TAAD and maybe consider genetic testing. Some of the known genetic markers can influence the repair algorithm. Discuss this with your cardiologists.
Happy Spring with lots of outdoor activity to all!!!
UPArtist

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@mplopez5

Do you happen to know if having an aortic aneurysms makes you more susceptible to other areas of the body such as the brain.?

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I believe two things were at play in my case (I am not an expert but these is through conversations with my Cardiologis who is also into genetics research specifically around aneurysms and bicuspid valves). First there seems to be a genetic propensity in my family, my brother has 3 brain aneurysms and I know of two other confirmed cases of aneurysm deaths on the same side of he family. My Dr looked for known genetic markers and found none, what led him to believe we may have an an unknown one in my famiy, so they are studying us. Second, in my case and maybe more relevant to others, is that I have a bicuspid aortic valve, according to him there is a relationship between BVs and aneurysms and not only aortic, so in my case that compounded my genetic propensity. Since then I had my children and siblings checked (and my mom) and they are all tricuspid, so only the genetic element is at play with them.

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@upartist

This is in reply to Bryan Fox: Is there anything more I can do to stop the growth.... I to have struggled with that question. My growth rate was measured at 4.4 (it was growing) and appears to have stabilized at a smaller 4.3. It was a Reassuring scan. I started taking collagen types 1 and 3, because I wanted to do "something". My BP is low, I have 0 CAD, I exercise regularly, no tobacco, and eat a plant based diet. I have been diagnosed with Familial TAAD. Its a good one to research for all with unexplained aneurysms. I do not have any of the known genetic markers, but that does not change my diagnosis of familial TAAD. There are numerous etiologies for ascending aneurysms, some of which can trigger aneurysms in other parts of the body, with only some showing the known genetic markers. As for me, I dont know if my collagen supplement makes any difference. It is a player in the integrity of the vascular wall and in the complex nitrous oxide exchange process, especially in some of the genetic anomalies associated with aneurysm disease. Too much for my brain! But this simple non-invasive daily act makes me feel a bit more in control. Plus my measurement appears to have stabilized after a year of using this supplement. So I plan to continue my behavioral interventions, including the supplement, and try to stay informed the best I can. However, everyone with an unexplained aneurysm should look up Familial TAAD and maybe consider genetic testing. Some of the known genetic markers can influence the repair algorithm. Discuss this with your cardiologists.
Happy Spring with lots of outdoor activity to all!!!
UPArtist

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Thank you - that's helpful. I'll ask my doctor when I have my next scans in August.

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@upartist

This is in reply to Bryan Fox: Is there anything more I can do to stop the growth.... I to have struggled with that question. My growth rate was measured at 4.4 (it was growing) and appears to have stabilized at a smaller 4.3. It was a Reassuring scan. I started taking collagen types 1 and 3, because I wanted to do "something". My BP is low, I have 0 CAD, I exercise regularly, no tobacco, and eat a plant based diet. I have been diagnosed with Familial TAAD. Its a good one to research for all with unexplained aneurysms. I do not have any of the known genetic markers, but that does not change my diagnosis of familial TAAD. There are numerous etiologies for ascending aneurysms, some of which can trigger aneurysms in other parts of the body, with only some showing the known genetic markers. As for me, I dont know if my collagen supplement makes any difference. It is a player in the integrity of the vascular wall and in the complex nitrous oxide exchange process, especially in some of the genetic anomalies associated with aneurysm disease. Too much for my brain! But this simple non-invasive daily act makes me feel a bit more in control. Plus my measurement appears to have stabilized after a year of using this supplement. So I plan to continue my behavioral interventions, including the supplement, and try to stay informed the best I can. However, everyone with an unexplained aneurysm should look up Familial TAAD and maybe consider genetic testing. Some of the known genetic markers can influence the repair algorithm. Discuss this with your cardiologists.
Happy Spring with lots of outdoor activity to all!!!
UPArtist

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Thank you for informative comments.
Are the aneurysms you mention measured at their root?
I read on my echo aortic root diameter 3.5
And A O mean PG 4.3 ( mean aortic gradient)
Appreciate any info.

REPLY
@upartist

This is in reply to Bryan Fox: Is there anything more I can do to stop the growth.... I to have struggled with that question. My growth rate was measured at 4.4 (it was growing) and appears to have stabilized at a smaller 4.3. It was a Reassuring scan. I started taking collagen types 1 and 3, because I wanted to do "something". My BP is low, I have 0 CAD, I exercise regularly, no tobacco, and eat a plant based diet. I have been diagnosed with Familial TAAD. Its a good one to research for all with unexplained aneurysms. I do not have any of the known genetic markers, but that does not change my diagnosis of familial TAAD. There are numerous etiologies for ascending aneurysms, some of which can trigger aneurysms in other parts of the body, with only some showing the known genetic markers. As for me, I dont know if my collagen supplement makes any difference. It is a player in the integrity of the vascular wall and in the complex nitrous oxide exchange process, especially in some of the genetic anomalies associated with aneurysm disease. Too much for my brain! But this simple non-invasive daily act makes me feel a bit more in control. Plus my measurement appears to have stabilized after a year of using this supplement. So I plan to continue my behavioral interventions, including the supplement, and try to stay informed the best I can. However, everyone with an unexplained aneurysm should look up Familial TAAD and maybe consider genetic testing. Some of the known genetic markers can influence the repair algorithm. Discuss this with your cardiologists.
Happy Spring with lots of outdoor activity to all!!!
UPArtist

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@upartist. Could you expand a little on how the Familial TAAD affects your treatment?

My husband has an aortic dilation. Like you, he has 0 CAD, exercises regularly, has never smoked and has eaten a mediterranean diet his entire life. I looked at the signs of Familial TAAD and he has a couple of them that are unusual, but not all the symptoms. We asked the PA at his aortic caregiver's office (not sure what the title is exactly) about genetic testing and she said it wouldn't make a difference in his care. I would like to hear what you have learned so that I can start to determine whether to bring it up with my husband. I think he is quietly extremely nervous about the dilation and I don't want to bring up the possibility of Familial TAAD unless/until I can determine what the change in treatment/outcome might be. Just interested in your experience as a place to start learning. Or perhaps a useful resource that you have found. Thanks in advance.

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@bitsygirl

@upartist. Could you expand a little on how the Familial TAAD affects your treatment?

My husband has an aortic dilation. Like you, he has 0 CAD, exercises regularly, has never smoked and has eaten a mediterranean diet his entire life. I looked at the signs of Familial TAAD and he has a couple of them that are unusual, but not all the symptoms. We asked the PA at his aortic caregiver's office (not sure what the title is exactly) about genetic testing and she said it wouldn't make a difference in his care. I would like to hear what you have learned so that I can start to determine whether to bring it up with my husband. I think he is quietly extremely nervous about the dilation and I don't want to bring up the possibility of Familial TAAD unless/until I can determine what the change in treatment/outcome might be. Just interested in your experience as a place to start learning. Or perhaps a useful resource that you have found. Thanks in advance.

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Hi Bitsy Girl. First, I am sorry about your husband's situation. It is definitely hard to have a loved one living with an unpredictable condition, and looking to maximize strategies is a good thing and obviously provides some control. You might find answers at http://www.ahajournals.org and look at the 2022 publication of TAD management recommendations. It is very comprehensive, and should hold the information you are looking for. It details different kinds of genetic variants, symptoms, and progression. Always remember that the blood pressure control is the foundation treatment for the aneurysm, and that other vascular anomalies/conditions can affect or fluctuate the blood pressure. (IE: sarcoidosis, vascular spasm, bicuspid valve, etc) The way I understand it, is that some genetic predispositions can lead to early dissection. There is so much they do not know yet. The Genetics are advancing really fast. Its an easy test, and is becoming the main stream standard of care. All my kids will be getting screening echoes very soon. I hope this helps. Good luck and continue surveillance and proactive approach!
Upartist

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@interest

Thank you for informative comments.
Are the aneurysms you mention measured at their root?
I read on my echo aortic root diameter 3.5
And A O mean PG 4.3 ( mean aortic gradient)
Appreciate any info.

Jump to this post

Hi Marta. The measurements are taken all along the length of the aorta and into the arch. For instance mine is shaped like a bubble. It is dilated in a few spots at different sizes. Each aneurysm can be shaped differently. Your cardiologist should be able to clarify this. Mine gave me drawings. I hope this helps.
Upartist

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@upartist

Hi Marta. The measurements are taken all along the length of the aorta and into the arch. For instance mine is shaped like a bubble. It is dilated in a few spots at different sizes. Each aneurysm can be shaped differently. Your cardiologist should be able to clarify this. Mine gave me drawings. I hope this helps.
Upartist

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Thank you, Upartist.

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