AAA with bicuspid aorta and connective tissue disorder.

Posted by sherrylou51b @sherrylou51b, Sep 30 12:48pm

I was diagnosed with Bicuspid aorta with aortic aneurysm measurement of 4.7 cm by CT scan 12/2024, and was stable CT scan in 8/2025. I have Sjogren's which is a connective tissue disorder, and can cause multiple symptoms, including chronic inflammation in the blood vessels of the heart. The cardiac thoracic surgeon recommended follow-up in one year, but I wasn't comfortable with this so will have repeat scan in 6 months. I will be seeing a new rheumatologist in a couple of months, and will ask what she thinks about my AAA. Anything I have read states that surgury may be done before the AAA reaches 5.0 cm. Anyone else have bicuspic aorta, with AAA and connective tissue disorder?

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sarastewart | @sarastewart | 5 days ago

Yes, I have a bicuspid aortic valve, 4.1cm ascending aortic valve, and undifferentiated connective tissue disease most likely serum negative RA.

What I have been told is a bit concerning. I am not sure you will like this information, but we may be very different even with our similarities. You may be in better circumstances than me.

I was told to wait for the aneurysm to enlarge before having surgery, but also that the connective tissue disease can make the heart tissue harden. This hardening of my heart tissue may place me in the “inoperable” category if my heart tissue is too brittle to sewn back up.

I have to believe that new methods to correct this defect may be discovered.

I will head to the Cleveland Mayo Clinic once I am about 4.5. I am going to go early because I am only 5’1”. I have read short people tend to dissect/rupture sooner than tall people.

I wish I had something more positive to say, but this is what I have been told and read.

Perhaps, someone else will add some more hopeful information after reading our posts.

Kay🌺

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