Aortic aneurysm

[Overstressed]

Hi,

Last friday I had my annual meeting with my cardiologist. Last year, he discovered an aortic aneurysm with me and unfortunately, this aneurysm got wider this year. He sends me now to have an MRI to get a full picture of the aorta under the chest.

I understood that the aorta is made-up of muscles and...connective tissue and since this disease belongs to the family of connective tissue diseases, I was wondering whether this problem is a common one, or that other things here are at play.

My cardiologist told me I don't look like people suffering from Marfann's disease. These people are tall and slim. I'm not tall.

I'm worrying a lot now, this is life threathening.

Many thanks,
OS.

 

[maryb]

Please try not to worry, I know its easy to say but so hard to do. I don't know anything about this condition so can't comment on that, but knowing its there means something can be done to treat it.
Sounds like you have a good chap in your cardiologist though, hope you don't have to wait too long for the MRI, once you've had the scan at least the problem will be clearer for him, I hope he can sort it for you.

 

[Overstressed]

Please try not to worry, I know its easy to say but so hard to do. I don't know anything about this condition so can't comment on that, but knowing its there means something can be done to treat it.
Sounds like you have a good chap in your cardiologist though, hope you don't have to wait too long for the MRI, once you've had the scan at least the problem will be clearer for him, I hope he can sort it for you.

Hi maryb,

Thank you for the kind words. My cardiologist was not so optimistic, my condition changed remarkably the last year, it looks. The outlook is not so good: at this speed a heart surgery might be necessary in 3 to 5 years, but it's too early to say. And since my heart valve leaks too, and this complicates a surgery.

But, my fear is that my aorta ruptures, and then it's over. Perhaps I need to check my abdomen aorta too.

Is this a common problem, or is this just bad luck, something I don't think it is, because the involvement of connective tissue.

Best wishes,
OS.

 

[Sushi]

Hi maryb,

Thank you for the kind words. My cardiologist was not so optimistic, my condition changed remarkably the last year, it looks. The outlook is not so good: at this speed a heart surgery might be necessary in 3 to 5 years, but it's too early to say. And since my heart valve leaks too, and this complicates a surgery.

But, my fear is that my aorta ruptures, and then it's over. Perhaps I need to check my abdomen aorta too.

Is this a common problem, or is this just bad luck, something I don't think it is, because the involvement of connective tissue.

Best wishes,
OS.

It is a common problem with a certain type of Ehlers-Danlos Syndrome--type IV, which is related to, but not the same as, Marfan's syndrome. Elhers-Danlos is genetic disorder of the connective tissue. In this type of EDs, COL3A1 seems to be involved.

And yes, different forms of Ehlers-Danlos are often found in ME/CFS patients but type III is more common.

Do you feel like chatting about this?

Best wishes,
Sushi

 

[Overstressed]

Hi Sushi,

Thank you -as always- for the valuable information. Chatting would be fine.

Best wishes,
OS.