Aortic Aneurysms – Introduce yourself & meet others

Welcome to the Aortic Aneurysms group on Mayo Clinic Connect.

An aortic aneurysm is a bulge in the wall of the aorta. The aorta begins deep in the heart as it emerges from the powerful left ventricle, gently arching over the heart, descending into the chest, and finally into the abdomen. Some aortic aneurysms can be harmless; others can lead to catastrophic problems. I invite you to follow this group and connect with others, share experiences, exchange useful information, and learn about aortic aneurysms. You can get started right away by clicking the +FOLLOW icon on the group landing page.

I’m Kanaaz (@kanaazpereira), and I’m the moderator of this group. When you join, you’ll also likely be welcomed by volunteer patient Mentors and fellow members. Learn more about Moderators and Mentors on Connect.

We’ve got some great conversations going on right now that I think you’ll like. Grab a cup of tea, or beverage of your choice, and lets chat. Why not start by introducing yourself?

@beekb

Hi Rory thank u for yr reply. I’m not sure how to use these boards quite yet. I feel like mayo just dx and sent me away. My local providers are good so I will follow up. Maybe sooner . If I could get sleep I would feel better. I’m taking an antidepressant now (couple weeks) that worked in the past for anxiety and postpartum depression. I posted other info on a mental health board today as well -the reason I went to mayo in first place was a study for Nash nonalcoholic fatty liver disease where I got a Mre and a biopsy which answered some questions but left more if u want to read that. I just try to keep as busy as my fatigue allows. Thank you for your kindness. I see there’s a messages section maybe u could pm me and we can converse more. ❤️

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Hi again. Good to hear from you. Let me know if you’d like to message me and talk about anything. I’m writing this again because I think I just might’ve sent a reply back to myself LOL but To give you some background about myself I am 67 my first name is Denise. I use Rory as my name on this website because he’s my grandson. Please feel free to email me anytime would love to keep in touch to find out how you’re doing and let you know how I’m doing keep busy that’s what I try to do

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Hi feel down too and try to keep my self up- I’m 48 and felt palpitations on and off since I was 8. I have 2 daughters 3 and 5. A 4.3 aneurysm was found incidentally 6/2018. Been depressed and scared since. I just wanted to share all the positive notes I have been taking to help make my self feel better which sometimes helps:
I wil be fine
Managed/Monitored.
no treatment needed
try not to worry about it
based on size – not dangerous – may never grow larger- keep bp low as it is-mine small-enlarged will be fixed if ever grows-routine
small/stable
no treatment needed-no surgercal indication now or ever only requires observation
no limitations other than bench/heavy weights
can live entire lives with this size and nothing happening
treatable when small – repairable when larger – there is a fix – monitored – most important.
gradual
too small – not a prob
many years checking – not now
keep fit
live and let live
keep up w apts
listen to dr's
repair rate high ie 98% – Full Recovery – Excellent They do millions of these
prob- 10 years – maybe more or ever- out repair – maybe new meds or non/minimaly-invasive fix's
stop thinking about it Dont do this to myself
file under all other worries u dont think of.

STAY POSITIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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@Drew944

Hi feel down too and try to keep my self up- I’m 48 and felt palpitations on and off since I was 8. I have 2 daughters 3 and 5. A 4.3 aneurysm was found incidentally 6/2018. Been depressed and scared since. I just wanted to share all the positive notes I have been taking to help make my self feel better which sometimes helps:
I wil be fine
Managed/Monitored.
no treatment needed
try not to worry about it
based on size – not dangerous – may never grow larger- keep bp low as it is-mine small-enlarged will be fixed if ever grows-routine
small/stable
no treatment needed-no surgercal indication now or ever only requires observation
no limitations other than bench/heavy weights
can live entire lives with this size and nothing happening
treatable when small – repairable when larger – there is a fix – monitored – most important.
gradual
too small – not a prob
many years checking – not now
keep fit
live and let live
keep up w apts
listen to dr's
repair rate high ie 98% – Full Recovery – Excellent They do millions of these
prob- 10 years – maybe more or ever- out repair – maybe new meds or non/minimaly-invasive fix's
stop thinking about it Dont do this to myself
file under all other worries u dont think of.

STAY POSITIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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❤️🙏🏻thank u had a mental health therapy appt today & this is just what the therapist ordered. Many thanks to you.

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Hi @rory,

Thank you for all the support and information you are offering.
You may notice that I removed your personal email and address from this public discussion because we recommend not sharing personal contact information in a public online forum. We don't want you getting unwanted spam or unwanted solicitations; instead, we recommend using the private message function – for instance, if you’d like to share your personal email with @beekb.
At the same time, I would also like to mention that the benefit of sharing in the community, in public group discussions, is that the messages not only help people actively participating in them, but also the people reading them and learning from them.
Thank you so much for understanding.

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Like many others, the diagnosis of ascending aortic aneurysm frightens me. Moreover, my current situation isn’t encouraging:

Adrenal adenoma under control with meds for over 10 yrs
4.1 sized slow growing AAA
PFO with ASA
Factor V Leiden
Mild CKD secondary to nephrosclerosis
Migraines with aura after age 50
About 7 years with high BP / low potassium due to adrenal situation – damage done
Well controlled BP for over 15 years
Urinary retention
Lost 50 lbs and kept off for 10 years but slowly gaining due to stress eating over all the above conditions

Feel doomed. Horrified of potential open heart surgery, stroke or dying during operation.

My mom had a stroke and a-fib. She passed away after 3 months in ICU. 25% brain bleed is what she had.

I worry a lot as it is, so I’m seeking therapy to cope with anxiety about my health and mortality.

Besides my health, great personal life.

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@segagirl

Like many others, the diagnosis of ascending aortic aneurysm frightens me. Moreover, my current situation isn’t encouraging:

Adrenal adenoma under control with meds for over 10 yrs
4.1 sized slow growing AAA
PFO with ASA
Factor V Leiden
Mild CKD secondary to nephrosclerosis
Migraines with aura after age 50
About 7 years with high BP / low potassium due to adrenal situation – damage done
Well controlled BP for over 15 years
Urinary retention
Lost 50 lbs and kept off for 10 years but slowly gaining due to stress eating over all the above conditions

Feel doomed. Horrified of potential open heart surgery, stroke or dying during operation.

My mom had a stroke and a-fib. She passed away after 3 months in ICU. 25% brain bleed is what she had.

I worry a lot as it is, so I’m seeking therapy to cope with anxiety about my health and mortality.

Besides my health, great personal life.

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Sounds v similar to self but not adenoma/adrenal dysfunction. Metabolic syndrome (15+ hrs fasting hypoglycemia, so wonder about insulinoma -grandmother had one. Also early heart disease in family, I have Aaa & mild regurgitation too, vasomotor rhinitis, factor 5, NASH, dry eye, osteoarthritis, si joint dysfunction. Have high ANA (just got the Ana 12 test waiting for results.)

Hang in there. Try not to be scared of procedures -they are pros. Is there a way to connect the dots. For ex, I feel my condition is EDS or a vascular disorder so getting checked, Therapy & mental health care is essential. Aortic valve fixes & AAA operations are successfully fixable fr research.

Liked by segagirl

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@segagirl

Like many others, the diagnosis of ascending aortic aneurysm frightens me. Moreover, my current situation isn’t encouraging:

Adrenal adenoma under control with meds for over 10 yrs
4.1 sized slow growing AAA
PFO with ASA
Factor V Leiden
Mild CKD secondary to nephrosclerosis
Migraines with aura after age 50
About 7 years with high BP / low potassium due to adrenal situation – damage done
Well controlled BP for over 15 years
Urinary retention
Lost 50 lbs and kept off for 10 years but slowly gaining due to stress eating over all the above conditions

Feel doomed. Horrified of potential open heart surgery, stroke or dying during operation.

My mom had a stroke and a-fib. She passed away after 3 months in ICU. 25% brain bleed is what she had.

I worry a lot as it is, so I’m seeking therapy to cope with anxiety about my health and mortality.

Besides my health, great personal life.

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Hello,
That is a pretty big punch list of issues. Hope you can correct as many as possible. Some I don't know what the acronyms mean. I had real bad headaches before my aneurysm repair and the issue went away completely after the surgery. They were so bad, it was just go to bed and sleep it off kind of thing. I would get them at work and would go sleep in my car. It was real problem. Maybe try some lite exercise if the Dr. approves. That will help with the weight and bring the BP down. I walk 3 miles a day on a treadmill where I can monitor the speed and incline which you can't do just walking on the street.

All the best.

Bruce
Texas

Liked by segagirl

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@segagirl

Like many others, the diagnosis of ascending aortic aneurysm frightens me. Moreover, my current situation isn’t encouraging:

Adrenal adenoma under control with meds for over 10 yrs
4.1 sized slow growing AAA
PFO with ASA
Factor V Leiden
Mild CKD secondary to nephrosclerosis
Migraines with aura after age 50
About 7 years with high BP / low potassium due to adrenal situation – damage done
Well controlled BP for over 15 years
Urinary retention
Lost 50 lbs and kept off for 10 years but slowly gaining due to stress eating over all the above conditions

Feel doomed. Horrified of potential open heart surgery, stroke or dying during operation.

My mom had a stroke and a-fib. She passed away after 3 months in ICU. 25% brain bleed is what she had.

I worry a lot as it is, so I’m seeking therapy to cope with anxiety about my health and mortality.

Besides my health, great personal life.

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Reading some replies, it sounds like we’re in prison, saying to each other the litany of crimes we’ve committed and that’s why we were incarcerated. Maybe some of us will get off with good behavior! I think we have to think of ourselves as the ones who were diagnosed, the ones who have been pinched and prodded for all of our frailties and now we know more than most people. I have some perennials in my garden that come up every year after many years the blooms are not as good as that used to be but they still smell sweet the bees still come. I’m not going to dig them out and replace them. Anything that survived that long it’s a wonder!

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@maryswims

Reading some replies, it sounds like we’re in prison, saying to each other the litany of crimes we’ve committed and that’s why we were incarcerated. Maybe some of us will get off with good behavior! I think we have to think of ourselves as the ones who were diagnosed, the ones who have been pinched and prodded for all of our frailties and now we know more than most people. I have some perennials in my garden that come up every year after many years the blooms are not as good as that used to be but they still smell sweet the bees still come. I’m not going to dig them out and replace them. Anything that survived that long it’s a wonder!

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Amen to you! Thank you for posting this. I have many many health issues, but I try to focus on living as healthy of a life style as I can and not let any of my many diagnosis determine who I am or run my life. Life is to short! Hang in there everyone and continue to enjoy the perennials of life. Thank you maryswims!

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New here. I am a 57 year old male. I survived a serious aortic dissection 6 years ago and am extremely fortunate to even be here today. I still have a tear in the lower aorta in the abdomen that is being monitored. The Doctor isn't too concerned as long as we monitor to make sure it doesn't grow. I pretty much healed and recovered most of my abilities within the first year. My main problem now is I get fatigued very easily. I believe it is because I never really recovered my level of strength from before the dissection. This was my own fault as I just never really did much exercise and put very little time in the gym. This snowballed and I also put on a lot of weight. I don't believe my chronic fatigue has any connection to my aortic dissection other than I just haven't put the work in the gym to regain my strength and overall health. My question is with this background does anyone have any suggestions on how a 57 year old overweight male who has lost his strength can get back in shape in a healthy manner. I'm not expecting the level of energy I had before, but this low energy lethargy is really becoming a concern. I wake up rested each morning (I use a CPAP machine). But soon become tired, lose mental focus and energy. Any suggestions on how to up my fitness and energy levels would be greatly appreciated. Also, advice on dropping weight is welcome as well. Again I'm new here, and am looking forward to the advice of this group. Thanks

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Hello to All! Nice to connect here with ones with similar diagnosis and see how we are dealing emotionally, since most information I've rcvd is factual and statistical, which I truly appreciate also, but could use some emotional support! After a routine dr. visit Feb 2019, had bp 170/110 that day, so had an ECHO that revealed 3.9 Ascending Aorta Aneurysm. Last few months have been many tests, thankful to be at Mayo, where other aneurysms were discovered- Brain, 2 Illiac and Renal Aneurysm. Also, mention of Fibromuscular Dysplasia (elongated and twisted arteries). Have not had any follow-ups to that even! Brain Aneurysm is where Carotid meets the Ophthalmic Artery, so recheck on that one first- the end of July. Then recheck Aorta Oct since mom died of (undiagnosed) AAA- that dissected, in same area, arch of aorta, incidentally in 9 minutes. I've done 24 gene tests but no known Syndrome, ruled out Marfan's, etc. Definitely Familial Thoracic Aneurysm (hereditary) and the FMD. Just living life in the meantime, going on a 5-mile hike with a club in my area next Monday, level ground around a lake, but afraid to do uphill hikes, and unsure if I can take a plane anywhere. Was only told no running nor lifting weights. Sorry such a long post! I appreciate your writings here, to connect with similar situations and see how it is being treated and how you're doing! Janet

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@GratefulEveryDay

Hello to All! Nice to connect here with ones with similar diagnosis and see how we are dealing emotionally, since most information I've rcvd is factual and statistical, which I truly appreciate also, but could use some emotional support! After a routine dr. visit Feb 2019, had bp 170/110 that day, so had an ECHO that revealed 3.9 Ascending Aorta Aneurysm. Last few months have been many tests, thankful to be at Mayo, where other aneurysms were discovered- Brain, 2 Illiac and Renal Aneurysm. Also, mention of Fibromuscular Dysplasia (elongated and twisted arteries). Have not had any follow-ups to that even! Brain Aneurysm is where Carotid meets the Ophthalmic Artery, so recheck on that one first- the end of July. Then recheck Aorta Oct since mom died of (undiagnosed) AAA- that dissected, in same area, arch of aorta, incidentally in 9 minutes. I've done 24 gene tests but no known Syndrome, ruled out Marfan's, etc. Definitely Familial Thoracic Aneurysm (hereditary) and the FMD. Just living life in the meantime, going on a 5-mile hike with a club in my area next Monday, level ground around a lake, but afraid to do uphill hikes, and unsure if I can take a plane anywhere. Was only told no running nor lifting weights. Sorry such a long post! I appreciate your writings here, to connect with similar situations and see how it is being treated and how you're doing! Janet

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Hello! Sounds like you’ve got a lot going on. Six years ago, I was diagnosed with an ascending aortic aneurysm. Didn’t even know that I had an aneurysm until I collapsed one day out of the blue. Turns out that I have an autoimmune disorder that doesn’t neatly fall into any of the vasculitis categories. I was scheduled for surgery about a month after the collapse. I was a little nervous waiting for the surgery. Doctors said that I shouldn’t worry about the aneurysm rupturing within a month. Unlike you, I didn’t have months to think about a growing aneurysm. All I can say is to continue to live your life as best you can. I am guessing that you will have surgery sometime in the future? Mayo Clinic is a great place , especially if you have a complicated case.

I do hope that you have a good support system with family and friends. I had to rely on many people after my surgeries. I am grateful that I had that support as my recovery was difficult due to complications. (Just so you know, I did not have my surgeries at a Mayo as I live in Southern California.). I am doing much better now. I somehow managed to remain optimistic throughout my procedures and long recovery.

I think this forum is a good place to get feedback and support. There aren’t many support groups out there for people who are dealing aneurysms pre and post surgery.

Best of luck.

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@GratefulEveryDay

Hello to All! Nice to connect here with ones with similar diagnosis and see how we are dealing emotionally, since most information I've rcvd is factual and statistical, which I truly appreciate also, but could use some emotional support! After a routine dr. visit Feb 2019, had bp 170/110 that day, so had an ECHO that revealed 3.9 Ascending Aorta Aneurysm. Last few months have been many tests, thankful to be at Mayo, where other aneurysms were discovered- Brain, 2 Illiac and Renal Aneurysm. Also, mention of Fibromuscular Dysplasia (elongated and twisted arteries). Have not had any follow-ups to that even! Brain Aneurysm is where Carotid meets the Ophthalmic Artery, so recheck on that one first- the end of July. Then recheck Aorta Oct since mom died of (undiagnosed) AAA- that dissected, in same area, arch of aorta, incidentally in 9 minutes. I've done 24 gene tests but no known Syndrome, ruled out Marfan's, etc. Definitely Familial Thoracic Aneurysm (hereditary) and the FMD. Just living life in the meantime, going on a 5-mile hike with a club in my area next Monday, level ground around a lake, but afraid to do uphill hikes, and unsure if I can take a plane anywhere. Was only told no running nor lifting weights. Sorry such a long post! I appreciate your writings here, to connect with similar situations and see how it is being treated and how you're doing! Janet

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Just want to say I had Thoracic Aneurysm surgery at Mayo 3 years ago at 78 years old and came thru it with flying colors. You are at one of the very best places for this surgery. My aorta aneurysm took several years to get to the point of a necessary surgery believe it was 5.5 size when it was determined to be a good idea. My surgeon was Dr. Alberto Pochettino, such a wonderful and expert doctor. You will be fine of this I'm sure. Good Luck to you and think positive, it really does help.

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Hi and thank you. I was recently diagnosed with a "mildly ascending thoracic aneurysm" (4.1 cm), the evening I landed in the emergency room, having tripped over a step while taking a palm frond to the garbage bin. SInce I'm on a blood thinner, I thought I should visit the ER to be sure I didn't incur internal bleeding. One CT scan later and I instantly became aware of my mortality. My blood pressure was high (don't remember how high, but not frightenly high) and my primary care doctor suggested I see my cardiologist asap. He (the cardiologist) put me on losartan 100 mg/1xday. Following the CT scan I also had an ECHO (about two weeks later), which revealed the aneurysm at 4.3 cm. The cardiologist told me I had a few years to go before I would need to be operated on. I asked lots of questions. I'm due for another ECHO in November (six months from the first ECHO). I've surrendered to the fact that I'm in a body which is showing signs of slowing down and am totally ok with this. I have a strong spiritual life and believe there is more to this life than what we're led to believe. I see each day as a wonderful, extraordinary blessing and am grateful for the life I have left to live. From what I gather from the many posts I have read and from the support given, offered and received, I am grateful I found such a wonderful group of people…

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Hi @twojunes2 , Sounds like it was a lucky thing that you tripped and then had the good sense to go to the ER to be checked out.

Don't panic about the different readings of the size of the aneurysm. The CT measures straight across and the ECHO measures on a diagonal so will always show a higher number.

What is important is to determine how fast the aneurysm is growing. It may be very stable, especially now that you are on the Losartan. But your next ECHO will give you and your cardio the information needed on growth rate. Mine has been at 4 or 4.1 for many years, very stable. I get an ECHO every 6 months to assure it is remaining stable. Also good to remember is that different technicians can measure slightly differently. So your ECHO reading might be slightly smaller or slightly larger next time but without any actual change in the size.

For me, I hope to never need the surgery but if I do, so be it. Aren't we lucky that medical science has advanced to the extent that such a surgery is possible?

So, my best advice to you is to not worry obsessively about this. Your aneurysm is still quite small and unless it is growing rapidly, you have many healthy years ahead.

Best wishes,
Donna

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