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?

Where in Minnesota would you have it? Winter is not a good time to get around in Mn.

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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Please let me know when you do this. So many people die without knowing they have it. I have an ascending thoracic 4.8 and my son a 4.2. I feel blessed to have found out about mine instead of being one of the latter ones. Knowledge is power. Mayo Clinic is trying to keep mine from growing so hopefully I never have to have the surgery.

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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February 9th at the Pantages theater. Details will be posted on the Rock from the Heart website. I've reached out to Mayo, hoping they will get involved in some way 🙂

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@kdh1

Where in Minnesota would you have it? Winter is not a good time to get around in Mn.

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At the Pantages Theater – downtown Minneapolis –with a VIP reception at SEVEN. We also have a guest rate at the Loews hotel… all 3 venues are on the same block.
Are you in MN? We get around ok here in the winter 🙂
love your last name…. my maiden name is Perreira–Portuguese 🙂

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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Hi. I am 66 and I was told six years ago that I had an ascending aorta dilation. At that time it was 4.1. My last chest CAT scan was 4.5 but my echo was 4.3. I go back in a few more months for another check to see how it's doing. But as long as you keep an eye on it and watch it and listen to your doctor then you shouldn't be worried. It's those that don't know they have it is concerning. My doctor says I could go on the treadmill but just be careful not lifting anything over 20 to 25 pounds. How old are you and how long have you had yours?

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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Hi Amy Beth. So good to see your post this morning. I also have an ascending aortic aneurysm at 4.6 and that is getting up there as I am a small person. I currently live out of state, but have chosen Mayo for the surgery and we are considering a move also to be close to follow up care and care as we age. It is so nice to know that your husband is doing well. Please give him our very best wishes. Would it be possible to email a bit to get to know each other and learn from our shared experiences? My husband’s sister-in-law is from MN and talks very highly about her home state. Thank you so very much and take care
Sincerely,
Deby

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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My husband's aneurysm was 5.0cm. He also needed his aortic valve replaced. We are very thankful in was found in time! His surgery was last July.

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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Hi Deby. Are they recommending that you have the surgery now when it is 4.6? My doctor told me they usually wait until it gets up to 5.0. Was just wondering. How long have you had yours? I was diagnosed six years ago. Love to hear back.
Denise

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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this is Pete – 1st photo taken about about 7 weeks after surgery; 2nd photo taken 4 months after surgery – his 2nd post op drumming gig (his first was 8 weeks post op) .

treadmill

Pete back drumming

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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Hi Denise…
Had a full day today and sorry not to have been able to get back to you sooner. My doc said that surgery is indicated at a five also, but a recent echo shows that it grew from a 4.5 to a 4.6 over the last year. So, I keep “watch and waiting” as they say and hoping it will slow down. I have had it for several years and a bicuspid aortic valve from birth. Docs here didn’t tell me I had it until l asked them meanings of certain numbers on my echo printout a couple of years ago. Needless to say, I was very surprised and concerned, so I researched my surgery location options. I feel that Mayo is the best even though we would have to travel unless we relocate first.
Deby
PS
Hope this helps Denise. Do you live near Mayo or would you also have to travel for surgery?I am very close to your age. Please feel free to write anytime.

Liked by Jamie Olson

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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Very inspiring Pictures Amy Beth!!! I need that hopefulness. Deby

Liked by Jamie Olson

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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Hi Deby. Thanks for getting back to me. I have a bicuspid aortic valve also since birth. And heart mummer. I have my sixth month chest cat scan end of September. They say that is more accurate. My echo showed 4.3 cm and chest scan showed 4.5. So I will see what it is in September. I don't worry about this any more. Was diagnosed in 2012. I exercise on treadmill and don't do any heavy lifting over 20 pounds. I live in ct. Heard about mayo clinic. Where is that? Sounds like ours is pretty similar. Try not to worry.
Denise

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

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Hi Lynn,
I am in the same situation but live out of state. Planning to visit Rochester next month to become familiar with Mayo. Would like to know others who might live there and have this problem. You have a great attitude that “knowledge is power”. Knowledge has helped me research and make future surgery choices, but it is also not easy. I wish you well. Deby

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@amybeth7367

My husband has his aortic aneurysm repaired and aortic valve replaced last summer after 2 years of watch and wait. When he was diagnosed, neither of us had ever heard or, or knew anything about aortic aneurysms.
We've since started Rock From The Heart to raise awareness of aortic disease and are planning an event in Minnesota – Feb 9 2019!
Our goal is to connect with others around the country, sharing experiences and hopefully saving lives along the way.

Jump to this post

Good morning Denise. Yes, it sounds like we have similar things regarding this aneurysm. My next test will probably be in Nov here in CA. I am two years older than you. Mostly my exercise is yoga and walking our dog.  I was told not to lift heavy objects also.Mayo is in Minnesota and rated as one of the best, if not the best.  Just wish I lived closer to them.   Have a good Saturday Denise.  Deby

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Hi everybody,

As Moderator of this incredible group, I just want to say how much I appreciate all the support and information. It is amazing what your shared experiences and insights can mean to other members.

I can only imagine how scary it must be to get a diagnosis of aortic aneurysm! Aortic aneurysms can be difficult to avoid because they usually don't have any symptoms, and can actually grow "silently" inside you for a long time. Very often these aneurysms are detected when a patient is being tested for something else – @laverne @jpmerk @lynnw, I'm thinking of you – but if detected early, they can be managed and may not even need surgical intervention.
I thought I'd share this information from Mayo Clinic, and highlight some important facts about aortic aneurysms:

– Thoracic aortic aneurysms often grow slowly and usually without symptoms, making them difficult to detect.
– Most people with aortic aneurysms do not have symptoms unless a tear (dissection) or rupture occurs.
– Aortic aneurysms are not always hereditary – about 20 percent of people with thoracic aortic aneurysm have a genetic predisposition to it, meaning it runs in the family. For instance, people who are born with Marfan syndrome are particularly at risk of a thoracic aortic aneurysm – as @jimmorris900 has shared.
– Surgery is generally recommended if your aneurysm is about 1.9 to 2.4 inches (about 5 to 6 centimeters) and larger.
https://www.mayoclinic.org/diseases-conditions/thoracic-aortic-aneurysm/symptoms-causes/syc-20350188

Since we are all so different, I hope this helps in some way. As members of this group and of Mayo Clinic Connect, I know you are in such a good place to get support, so let's keep talking and sharing.

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