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Aortic Aneurysms – Introduce yourself & meet others

Posted by @kanaazpereira, Fri, Feb 16 12:24am

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?

REPLY

Hi @DiannaTV @cynaburst @lynnkay1956 @jessicalatessa @HeartPatches @abster93 @elsinann @wangs @mariejnd @jend @teatime @jimmorris900 @glenys123 @mlan68 @janetpomponio @laverne @hopeful33250 @predictable @johnbishop @morningglory @thankful @ch246cf10 @ssams @kdh1 @playsdixie @mamamae @bobireland @trish602 @clevelandme @michellr @aldona @jbsb93 @axels @crhp194 @shakuni11 @janean @grandmajan @morgan44 @smithjss @srlove @jimmorgan @noram @aqs1 @pbr420 @lisaannhicks @redskin39 @hermthor @acara @worry,

I’d like to invite you to the new group dedicated to discussions about aneurysm conditions such as aortic aneurysm, aortic dissection, abdominal aortic aneurysm, abdominal aortic branch occlusion, aortic branch aneurysm, aortitis, thoracic aortic aneurysm, and more.
It’s a space where we can ask questions, share tips and learn about aortic aneurysms from each other. Please drop a note to say hi and introduce yourself.

Liked by judyvv1936

Hi
Thank you for creating this space and inviting me to share in it. I look forward to hearing others’ stories and questions. LaVerne

Thanks, I look forward to hearing others’ experiences and questions. John

Hello John @jpmerk,

I see that you joined Connect a while ago, and this is your first post; welcome! Do you have questions or concerns about aortic aneurysms?

@kanaazpereira

Hi @DiannaTV @cynaburst @lynnkay1956 @jessicalatessa @HeartPatches @abster93 @elsinann @wangs @mariejnd @jend @teatime @jimmorris900 @glenys123 @mlan68 @janetpomponio @laverne @hopeful33250 @predictable @johnbishop @morningglory @thankful @ch246cf10 @ssams @kdh1 @playsdixie @mamamae @bobireland @trish602 @clevelandme @michellr @aldona @jbsb93 @axels @crhp194 @shakuni11 @janean @grandmajan @morgan44 @smithjss @srlove @jimmorgan @noram @aqs1 @pbr420 @lisaannhicks @redskin39 @hermthor @acara @worry,

I’d like to invite you to the new group dedicated to discussions about aneurysm conditions such as aortic aneurysm, aortic dissection, abdominal aortic aneurysm, abdominal aortic branch occlusion, aortic branch aneurysm, aortitis, thoracic aortic aneurysm, and more.
It’s a space where we can ask questions, share tips and learn about aortic aneurysms from each other. Please drop a note to say hi and introduce yourself.

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Hello to all. I'm five years out from my valve sparing aortic root replacement. I was dilated to 52cm. My was partially due to I have marfan syndrome.

@kanaazpereira

Hello John @jpmerk,

I see that you joined Connect a while ago, and this is your first post; welcome! Do you have questions or concerns about aortic aneurysms?

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My story is fortunately unremarkable since my AA accidental discovery nearly twenty years ago. My experience is routine scans. Consequently my intent is to read and learn..
John

Hi Kanazawa, my husband showed me this Mayo Clinic site. I had my surgery 5 years ago. I haven’t met anyone who has had this type of aneurysm or surgery. I’d like to learn about other people’s experiences with this type of aneurysm.

Welcome to Connect, @tazzy. For which type of aneurysm did you have surgery? Do you have specific questions that you'd like to ask the members in this group? We look forward to getting to know you.

I had a Bentall procedure, Coronary artery bypass grafts, mechanical aortic valve. I had the first surgery in Nov. 2012 followed by a complete re-do three months later due to problems from the first surgery.

I have chronic pain in my chest since those surgeries. The best guess from my doctors is that major scar tissue is causing the pain. I’ve tried a few things to see if I can stop this pain (medication, acupuncture, cortisone injections, lidocaine patch) but so far nothing has helped much. Curious if anyone else has experienced chronic pain after surgery(ies).

In addition, my aneurysm was caused due to a genetic marker HLAB 27. Does anyone else have this?

@kanaazpereira

Hi @DiannaTV @cynaburst @lynnkay1956 @jessicalatessa @HeartPatches @abster93 @elsinann @wangs @mariejnd @jend @teatime @jimmorris900 @glenys123 @mlan68 @janetpomponio @laverne @hopeful33250 @predictable @johnbishop @morningglory @thankful @ch246cf10 @ssams @kdh1 @playsdixie @mamamae @bobireland @trish602 @clevelandme @michellr @aldona @jbsb93 @axels @crhp194 @shakuni11 @janean @grandmajan @morgan44 @smithjss @srlove @jimmorgan @noram @aqs1 @pbr420 @lisaannhicks @redskin39 @hermthor @acara @worry,

I’d like to invite you to the new group dedicated to discussions about aneurysm conditions such as aortic aneurysm, aortic dissection, abdominal aortic aneurysm, abdominal aortic branch occlusion, aortic branch aneurysm, aortitis, thoracic aortic aneurysm, and more.
It’s a space where we can ask questions, share tips and learn about aortic aneurysms from each other. Please drop a note to say hi and introduce yourself.

Jump to this post

Hello all. I was having an echocardiogram at the Mayo Procedures Bdlg in Scottsdale in Jan of 2012 to determine why I have cardiac/breathing problems when I lie on my right side when sleeping or relaxing. My heart used to go into SVT at night when I had turned over to right side. Well, at that procedure in 2012 my heart got so destressed that I was sent by ambulance to the nearest hospital which was was Scottsdale and it was discovered that I had had a heart attack. Today, after good cardiac care and two oblations to aid the SVT I still get distressed when I lie on my right side. Any ideas?

Hi @tazzy,

Thanks for sharing your information. @jimmorris900 has written about his experiences with the David procedure (valve-sparing aortic root replacement ), and may have more insights for you.

I'm also tagging @dmkmom04 who has mentioned having the genetic marker HLAB 27; you may wish to read her post in this discussion on Connect: https://connect.mayoclinic.org/discussion/cerebellum-atrophy/

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. ☺

From one big heart to another. Best wishes to you! You are strong!!!

@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. ☺

Jump to this post

Boy, that sounds rough. Good that you are able to exercise, albeit modified from what you used to be able to do. I was quite active myself prior to my heart and artery problem as well. I wasn’t even aware that I had an growing problem until I just collapsed one day. Was quite a shock to learn that I had an aneurysm and enlarged heart! You sound a bit like me. Even with discomfort, you just move forward as best as you can. I can’t do nearly what I could do pre-surgery. At least I have found a person who specializes in teaching Pilates for people who have mobility issues post surgery.

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