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Newly Diagnosed: 4.9 cm ascending aortic looking for support
Aortic Aneurysms | Last Active: 3 hours ago | Replies (65)Comment receiving replies
@farmerken
I am also new to the group. I have a 4.7cm AAA with a bicuspid aorta heart defect. I also have Sjogren's which is considered a connective tissue disorder. Being monitored at this time through thoracic surgeon. What connect tissue disorder do you have and how is it being monitored in relation to AAA?
Replies to "@farmerken I am also new to the group. I have a 4.7cm AAA with a bicuspid..."
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@sherrylou51b
Thank you for reaching out , I had my genetic testing done in south bend and they tested for over 100 known connective tissue disorders. They determined I had an undefined gene that was in the HCN4 category and wasn’t to do with my weak aorta but when Mayo Clinic reviewed it their drs said it could very well tied to aortic disease .. it’s amazing sometimes that we are kind of at the mercy of the drs and facilities we go to .. Mayo Clinic has made me feel much more comfortable with this coming surgery and also talking to me and explaining things to me .. top notch surgery center at Mayo I feel like ..