Newly Diagnosed: 4.9 cm ascending aortic looking for support

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.

@mikeneverwired hi Mike I hope my experience works out like yours I’m struggling with this mine is at 3.8 so they are watching it but that just adds added stress on top of already having anxiety and panic disorder I wake up with the feeling of doom it is consuming my life I do not sleep well at all always worrying about if it ruptures will I make it to the ER in time I live in the country which is 30 miles to town everyday is like a nightmare with this that’s why I came here I have great family support but it’s not the same as connecting with someone who is going through the same thing. I want to get rid of this black cloud over my head. Any advise I would love ❤️ I also wish you the best of luck 🤞 Ann

People mentioned cleveland clinic for high volume, but which location are they talking about?

@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

@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

@midnightwolf
I used to have more anxiety and was afraid to travel after I found out. I have since calmed down. I haven't got the answers regarding how my Sjogrens enters in since it can cause inflammation to blood vessels. I see a different thoracic surgeon in January at University of Washington. There isn't any Mayo clinic in my state. I also live in a rural community a few hours from Seattle. I have my faith and have to trust God with my health and my life.

@midnightwolf
I used to have more anxiety and was afraid to travel after I found out. I have since calmed down. I haven't got the answers regarding how my Sjogrens enters in since it can cause inflammation to blood vessels. I see a different thoracic surgeon in January at University of Washington. There isn't any Mayo clinic in my state. I also live in a rural community a few hours from Seattle. I have my faith and have to trust God with my health and my life.

@midnightwolf Hi Ann, I'd look at it this way...when my aneurysm was at 3,8cm like yours is, I was blissfully ignorant.. out running, climbing mountains, doing crossfit and working a stressful job. The docs have enough experience with these aneurysms that they don't worry until it exceeds 5cm. What you need to do is see how fast the aneurysm is growing... get another echo in 6 months and see how it changed (if at all). That will help you estimate when it is time for surgery which is likely a long way off! Meanwhile, stay in shape and do not fret this.

@midnightwolf hi we understand the anxiety that those news can create, we have all gone through something similar.

At 3.8 your aneurysm is small, the chances of it dissecting are close to 0, the best advice I can give you is to fill your life with activities that bring you joy and keep your mind and attention occupied, whatever makes you happy. In my case spending time with family and friends, yoga, exercise intensely, biking, do the trick. Also consider professional help, a good counselor can help you manage the anxiety.

You’re far away from maybe needing surgery, and it may never grow to that (I imagine your Drs are monitoring growth rate which is important in your case), stay active, treat your body and mind well, overall watch your BP, high BP is the main enemy of aneurysms.

BTW you mention ascending thoracic and abdominal, those are two different things, depending on where it is it can be ascending (which are always thoracic) or descending which can be either thoracic or abdominal, that’s important as the surgeries to repair are different.

All the best to you!!!