Newly Diagnosed: 4.9 cm ascending aortic looking for support

@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?

@sbest010 thank you for the thorough response. I just had my first consultation with a surgeon today. It was an interesting meeting. I’m glad I have a second opinion scheduled with U of M in two weeks. I had to push to get the scan with contrast, which they did after my appointment. Surgeon said he questioned the measurement from the first scan and that I should come back in a year. Even my GP said they should do a scan with contrast, especially since this just popped up last week and was at a 4.9.

@farmerken thank you! I asked the surgeon I met with today and he didn’t seem too interested in pursuing that. I pushed a little and he said he’d could go ahead with it if I wanted to. I’m going to pursue this with my second opinion doc.

I was in your position about 2 years ago.. was diagnosed with a 5.2cm ascending aneurysm and was immediately referred to a surgeon. I also had no history, low BP, low cholesterol and exercised all the time... I was a little apprehensive but got it done. The recovery is tough so plan to take a few months to recover and DO NOT overdo it in the recovery phase.... and walk as much as you can! Fast forward to today... 22 months post surgery and I am fully recovered, doing anything I want to do including hiking, biking, snowshoeing, etc. So find a good surgeon who geeks out on this kind of stuff, get it done and you will come out of this just fine.

@lmcfarland

Hey Farmerken here again , it certainly wouldn’t hurt , it would be good to know because when I had my whole aortic arch replaced I wasn’t pre tested before the surgery and the surgeon had a hard time sewing my new arch and new aorta on to my original abdominal aorta .. he said he felt like I had a connective tissue disorder of some sort .. genetic testing proved I do have an unusual gene that can lead to aorta failure .. my original surgery was in 2022 a dissection from my right leg all the up to the arch ..the blessing was they found out I had the aneurysm too at that point . the dr there told me I would need something done with the abdominal aorta someday because it would grow and it was already dissected .. it’s now at 5.8 cm where it meets the new upper Dacron graft that was put in in 2022… so I am having a open thorabdominal surgery on Jan 19 at Mayo in Rochester .. I feel good but it has to be done because it’s weak and will rupture at some point and that will be end of me … I am 60 and have a family farm with 3 sons and still super active .. so the right answer is to have the surgery .. I’ve been informed that it will be roughly a 14 hr surgery and I pray everything goes well … I pray for you and everyone on this app.. there is a lot of worry knowing that we have this weakness … hard to get off of our minds .. I will tell you tho that these aortic surgeries have come so far in the last decade ..very fortunate on that …. Main thing is go to a highly recognized facility that does alot of these surgeries and care that we need .. there are no second chances with these surgeries .. please go where you feel is the best !

Also I wanted to say it is hard to get off your mind when you know you have an aneurysm anywhere in you aorta .. I consumes a lot of our days thinking about it .. with proper monitoring it does make a person feel better but maybe groups like this can give us people to talk to a relate to .. I appreciate anyone on here .. we are all it together !!

@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 ..

@farmerken
I have only had autoimmune Testing but no one had recommended genetic testing. I am scheduled again in January for another CT and echo. Last AAA measurement was 4.7 cm. Pray all goes very well with upcoming surgery.

@lmcfarland my heart and prayers are with you I’m going through one myself I have a 3.8 ascending thoracic abdominal aortic aneurysm it was found in 2019 and my life has not been the same I anxiety and panic disorder after finding this diagnosis out I feel like I’m spiraling out of control all I think about is what if it ruptures and living out here in the country would there be enough time to make it to the hospital? I wake up sweating and having that feeling of doom it is on my mind day and night and affects my sleep and they say try to keep stress down which is hard when you have anxiety and panic disorder. They will not touch mine till it is over 5 cm waiting that long makes it worse I’m scared to death I hope you get the answers I’m still looking for answers also. I came here for support I have a lot with family but they have no idea what we are going through and how it effects us each day the constant fear of rupture and trying to not do anything that would help,it to grow faster but that is very hard I wish you the best of luck and if you would like to talk I’m here always up to meeting new friends that are going through the same thing. Ann