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?

@jbell22

Wow, a lot of really interesting, ditressing situations out there. I have a right-facing aorta with a kommerellis diverticulitis and an abhorrent left subclavian artery which has eroded and embedded into my spinal column. The kommerellis is an aneurysms of some type and I worry constantly about it bursting. I had heart surgery in 2015, where they went in my back (in hopes of removing the subclavian artery from my spine – where not able to) but they did cut parts of my heart which where strangling my trachea and esophagus and rolled my aorta and tacked it onto my heart (to try and get it off my trachea). This was thought to be my first of 3 open hearts with the next possibly being an artificial aorta put in. It has been a confusing nightmare. I am 57 year old female who was etremely active and am able to excerise again now but not without fear (and limited breathing ability and pain). I have had this since birth but it didn't 'blow-up' or make itself know until 2014. Besides worrying about the heart issues, this artery growing into my spinal column freaks me out as well. Thanks for listening. ☺

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We do sound alike. It was really hard to get my mind wrapped around the fact I would not be the same person again (I did a lot of training and competing) but I have become more settled with it as time goes by. I am glad you found what works for you and you are able to keep strong – pilates are great!

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Hi everyone. I was diagnosed in 2012 with ascending aorta dialation. Echo showed 4.1cm. Now in 2018 echo showed 4.3 but ct scan showed 4.5 cm. which reading do you go by? Dr scheduled another scan in 6 months. Dr said keep up with my daily routines but no heavy lifting. Any feedback would help. Thanks.

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Hello, I had a heart scan and they said I had a mild dilation of the thoracic aorta at the level of the pulmonary artery (3.9 x 3.8 cm) the Cardiologist didn’t have an available app for two weeks. I’m very concerned. Does anyone know what this means? Do I need to worry? Thank you

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Welcome to Connect, @ees1027,

Dilation of the thoracic aorta, or thoracic aortic aneurysm as it is more commonly called, is a bulging out of the walls of the aorta. Aneurysms that involve the part of the aorta in the chest (thorax) are called thoracic aortic aneurysms, whereas those involving the part of the aorta in the belly or abdomen are called abdominal aortic aneurysms. https://www.mayoclinic.org/diseases-conditions/thoracic-aortic-aneurysm/symptoms-causes/syc-20350188

You may notice that I moved your discussion and combined it with this existing discussion on thoracic aneurysms. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

We have so many members who have shared their experiences with thoracic aortic aneurysms, and I'd like to introduce you to a few; please meet @jpmerk @rory @noram @pbr420 @crhp194 @morningglory @grandmajan @ch246cf10 @HeartPatches @jimmorris900 @janean. I'd also encourage you to read through the messages in this other discussion, https://connect.mayoclinic.org/discussion/thorcic-aneurysm/

@ees1027, may I ask if you would share a few more details? What is your main concern at the moment? Have you asked your doctor whether it's okay to wait for two weeks before meeting with the cardiologist?

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@kanaazpereira

Welcome to Connect, @ees1027,

Dilation of the thoracic aorta, or thoracic aortic aneurysm as it is more commonly called, is a bulging out of the walls of the aorta. Aneurysms that involve the part of the aorta in the chest (thorax) are called thoracic aortic aneurysms, whereas those involving the part of the aorta in the belly or abdomen are called abdominal aortic aneurysms. https://www.mayoclinic.org/diseases-conditions/thoracic-aortic-aneurysm/symptoms-causes/syc-20350188

You may notice that I moved your discussion and combined it with this existing discussion on thoracic aneurysms. I did this as I thought it would be beneficial for you to be introduced to the many members who have discussed much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

We have so many members who have shared their experiences with thoracic aortic aneurysms, and I'd like to introduce you to a few; please meet @jpmerk @rory @noram @pbr420 @crhp194 @morningglory @grandmajan @ch246cf10 @HeartPatches @jimmorris900 @janean. I'd also encourage you to read through the messages in this other discussion, https://connect.mayoclinic.org/discussion/thorcic-aneurysm/

@ees1027, may I ask if you would share a few more details? What is your main concern at the moment? Have you asked your doctor whether it's okay to wait for two weeks before meeting with the cardiologist?

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I’m am concerned because I don’t understand what’s going on? The folks who did the scan mention everything was fine then I guess someone else read the scan. I don’t know anything about it and if I should be concerned. Thank you

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I has a well functioning ATS Mechanical valve put in 8 yrs ago and now have aneurysm of 5.2.
Diff surgeon providing diff opinion to replace the valve again or leave existing valve and replace aorta only.
Does anyone has been in this situation?

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I am a 32 year old female. Previous smoker but no other predispositions. I have a AAA and was hoping someone could give me some advice. My symptoms are getting worse but not sure that everything is related. Along with the strong throbbing in my stomach I’m also having back pain. I have a purple spot on the back of my right calf. A huge vein sticking out on my right thigh. Tightness on the left side of my neck. And constantly low blood pressure. Are all or some of these related? Please help!! Thanks in advance.

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How many centimeters is your aneurism (sp)?

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Hi I am Lynn. I was diagnosed with a 48 ascending and 39 root aneurysm when trying to find the cause of my heart arrythmias. I am on the wait and watch method right now. I was told it was probably caused by high blood pressure which I have never had but have since found out my son has a 42 ascending so I am now a hereditary one. Am trying to get my other 2 kids screened. Am one year since diagnosis with no change in size, which is good. How long does it take to not have this in my head at all times. My father in law died from this so I know what can happen. I thought with distance I would stop thinking about it but it is always there. Doctor says it may never grow any more. Does that happen very often or are they just trying to keep me from worrying? Research is difficult as you all know since it is tailored to doctors. Feel very alone with this.

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My ascending aortic aneurysm has been stable at 3.9 cm since 2010. I am careful to not lift more than 25 lbs. But you are right, it is hard to not think about cardio issues.

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@rory

Hi everyone. I was diagnosed in 2012 with ascending aorta dialation. Echo showed 4.1cm. Now in 2018 echo showed 4.3 but ct scan showed 4.5 cm. which reading do you go by? Dr scheduled another scan in 6 months. Dr said keep up with my daily routines but no heavy lifting. Any feedback would help. Thanks.

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Measurements of aortic aneurysms differ when measured on an echo or on a CT scan — one is measured on a bias — the CT scan I believe. And measuring on the bias results in a higher number.

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@lynnw

Hi I am Lynn. I was diagnosed with a 48 ascending and 39 root aneurysm when trying to find the cause of my heart arrythmias. I am on the wait and watch method right now. I was told it was probably caused by high blood pressure which I have never had but have since found out my son has a 42 ascending so I am now a hereditary one. Am trying to get my other 2 kids screened. Am one year since diagnosis with no change in size, which is good. How long does it take to not have this in my head at all times. My father in law died from this so I know what can happen. I thought with distance I would stop thinking about it but it is always there. Doctor says it may never grow any more. Does that happen very often or are they just trying to keep me from worrying? Research is difficult as you all know since it is tailored to doctors. Feel very alone with this.

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An aneurysm is usually defined as an outer aortic diameter over 3 cm (normal diameter of the aorta is around 2 cm), or more than 50% of normal diameter. If the outer diameter exceeds 5.5 cm, the aneurysm is considered to be large.

There is usually a determined size when something needs to be done. Abdominal over 6cm. The most important thing for you is to have a dr that you trust and try to know that you are being watched by someone in that specialty.

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Welcome to Connect, @lynnw,

I'm so glad you've joined this group. It is natural to feel afraid, but as you can read throughout the discussion, it is a condition that many people have and live well with. I hope members @grandmajan @ch246cf10 @michellr @HeartPatches @jimmorris900 @jend @dixitworld @shakuni11 @smithjss will also join us here and share their insights.

Here's some detailed information from Mayo Clinic, as well:
https://www.mayoclinic.org/diseases-conditions/thoracic-aortic-aneurysm/symptoms-causes/syc-20350188
@lynnw, what is your main fear or concern at the moment?

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@amiscott32

I am a 32 year old female. Previous smoker but no other predispositions. I have a AAA and was hoping someone could give me some advice. My symptoms are getting worse but not sure that everything is related. Along with the strong throbbing in my stomach I’m also having back pain. I have a purple spot on the back of my right calf. A huge vein sticking out on my right thigh. Tightness on the left side of my neck. And constantly low blood pressure. Are all or some of these related? Please help!! Thanks in advance.

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Hello @amiscott32,

I'd like to connect you with @ssams @playsdixie @worry @crhp194 @kdh1 @mlan68 @janetpomponio @mamamae @elsinann, all of whom have discussed their experiences with abdominal aortic aneurysm (AAA)

According to this article from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/abdominal-aortic-aneurysm/symptoms-causes/syc-20350688 the best ways to prevent a rupture is
– Quit smoking or chewing tobacco.
– Keep your blood pressure under control.
– Get regular exercise.
– Reduce cholesterol and fat in your diet.

You may also wish to read these discussions on AAA:
– Abdominal Aortic Aneurysm https://connect.mayoclinic.org/discussion/abdominal-aortic-aneurysm-2b62d0/
– Abdominal aortic aneurysm: 4.4cm is that serious? https://connect.mayoclinic.org/discussion/abdominal-aortic-aneurysm/

@amiscott32, may I ask if the AAA is being monitored by your doctor? What changes, if any, have you made to help prevent a rupture?

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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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