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.

Get started rby clicking the +FOLLOW icon on the group page here: https://connect.mayoclinic.org/group/aneurysms/

There are 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?

Interested in more discussions like this? Go to the Aortic Aneurysms group.

@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) .

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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.

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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

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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.

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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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@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

Rochester is a very user friendly town. Caters to patient needs. Mayo is awesome to work with. They are great at juggling appointments to help out the out of town patients. Mayo has been #1 in Cardiac for many years.

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Hi to All ! I am new to this group and am very interested to all of the posts. In late 2015 an aneurysm was accidentally found that was 3.5 and last month a CT showed it to be 4.8. I am trying to decide what kind of Dr.to go to. I also may consider Mayo in Florida. I have seen good recommendations for Mayo in MN.
I have diabetes and autoimmune thyroid disease., controlled with meds. Am presently and for the past 3 yrs have been dealing with back issues. I have had all the injections, nerves burned, surgery and the pain will not go away.I am not able to exercise any more. I feel that most of my issues were caused due to the back issue as I was very active and a 3 mile a day walker. Right now, I am a hot mess. Any advice would be appreciated. Thanks

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I have a question about after the AAA surgery, I had my first and only check one month after my surgery the Dr. Said. See you in 5 years . is this the normal amount of time between visits . in the repair he had to remove the aneurysm and sew up the open part of the aorta. Could the thread or material used break over time? Anyone that has had a AAA please let me know how. Often you saw the Dr. after surgery. Thank you kdh1

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Hello,
I had my Aortic Aneurysm repaired in 2005. Had follow-ups with the surgeon many times in the first year. Then I would do a CT every year. After that it was just follow-up with Cardiologist. I am going to assume you the Surgeon and Cardiologist are two different Doctors as was in my case. You should see your Cardiologist and set up a check-up plan that you are comfortable with. I had my Aortic Valve replaced this January. Had 2 follow ups with the Surgeon and shook hands. Just last month had my 6 month post-op follow up with Cardiologist. I'll see them again in 6 months. My Family (Primary Care) Doctor monitors my Blood Pressure, giving updates to the Cardiologist, I'm good with this. Hope this gives you some ideas.

All the best.

Bruce
Texas

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