1. < Aortic Aneurysms

Ascending aneurysm how fast do they grow?

Posted by glendamn @glendamn, Jun 18 11:38am

Hi , was wondering if anyone would like to share how fast there aneurysm have grown between appt ?? I have a bicupsid valve and ascending aneurysm. First measured at 4.2 six months later it’s 4.4 . Is this a slow movement ??? Should I be check yearly ?? Just waiting on the surgeon to follow up . Thanks !!

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hsminc | @hsminc | Sep 18 5:15am
In reply to @momof2gems "Hello fellow Atlantic Canadians. I am in Nova Scotia. I have an aorta and celiac artery..." + (show)
@momof2gems

Hello fellow Atlantic Canadians. I am in Nova Scotia. I have an aorta and celiac artery aneurysm. I find the doctors in Halifax very easy going if it comes to following me. I have only talked on the phone with a vascular surgeon since my diagnosis in 2022. I have had 1 CT angiogram scan for it and one for the connective tissue clinic where they discovered I had an aorta aneurysm as well.
There hasn’t been any advice besides no heavy lifting. I keep an eye on my blood pressure, but for the rest….i don’t know.
I suspect I might have Ehlers Danlos syndrome (I have quit a few symptoms), but I can’t get a referral for genetic testing. I don’t have a family doctor. Mostly I learn about aneurysms is by Googling it and reading medical research papers.🙂

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You can order genetic testing on your own. You do not need. Doctor to order for you. It is not very expensive. One firm that is set up to be customer patient friendly is invitae. Just google them.

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hsminc | @hsminc | Sep 18 5:18am
In reply to @momof2gems "Hello fellow Atlantic Canadians. I am in Nova Scotia. I have an aorta and celiac artery..." + (show)
@momof2gems

Hello fellow Atlantic Canadians. I am in Nova Scotia. I have an aorta and celiac artery aneurysm. I find the doctors in Halifax very easy going if it comes to following me. I have only talked on the phone with a vascular surgeon since my diagnosis in 2022. I have had 1 CT angiogram scan for it and one for the connective tissue clinic where they discovered I had an aorta aneurysm as well.
There hasn’t been any advice besides no heavy lifting. I keep an eye on my blood pressure, but for the rest….i don’t know.
I suspect I might have Ehlers Danlos syndrome (I have quit a few symptoms), but I can’t get a referral for genetic testing. I don’t have a family doctor. Mostly I learn about aneurysms is by Googling it and reading medical research papers.🙂

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The website for one genetic testing firm where you can order yourself is http://www.invitae.com

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momof2gems | @momof2gems | Sep 18 8:31am

Thank you I will look into that. I am concerned about their privacy policies though. Have you used them?

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pamela78 | @pamela78 | Sep 18 9:04am
In reply to @hsminc "Two of my husband's cousins (one maternal and the other paternal) have had mid level ascending..." + (show)
@hsminc

Two of my husband's cousins (one maternal and the other paternal) have had mid level ascending aortic aneurysms. One dissected; he arrested several times; was resuscitated; was finally surgically repaired by an experienced fantastic surgeon. He had no idea before his dissection that he had an aneurysm; was very health conscious; walked daily; went to the gym daily and lifted weights. He was 78 years old. He now has an abdominal aneurysm (5.5 cm) and is resigned to die if this bursts - breaking his wife's heart.
The other cousin was in his late sixties and had prophylactic surgical repair of a midlevel ascending aortic aneurysm because he also had a faulty valve. This cousin is similarly very health conscious and owns several gyms. He lifted weights too on a regular basis.
Since my husband's Mayo cardiologist described the stress that lifting weights above your head puts on your heart and the ascending aortic, we are wondering since these two cousins shared this "hobby" that maybe lifting weights, particularly overhead, could be a major cause of dissection or rupture.

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I'm 78 with a 4.2 AAA and I'm sure not resigned to dying. Get the repair and live another ten years!

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momof2gems | @momof2gems | Sep 18 9:48pm

Well I checked out the website for genetic testing. Unfortunately for all bloodwork I need a referral from a dr.

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1 reply
pamela78 | @pamela78 | Sep 19 10:17am
In reply to @momof2gems "Well I checked out the website for genetic testing. Unfortunately for all bloodwork I need a..." + (show)
@momof2gems

Well I checked out the website for genetic testing. Unfortunately for all bloodwork I need a referral from a dr.

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I'm scheduled to have a genetic test through my cardiologist's office in November. I want to do it to find out if my kids are at risk. I don't know what it will cost or if insurance will cover it, but I think it's worth it. Good luck to you.

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