1. < Aortic Aneurysms

Aortic Aneurysms – Introduce yourself & meet others

Posted by Kanaaz Pereira, Connect Moderator @kanaazpereira, Feb 16, 2018

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 Support Group.

pamela78 | @pamela78 | Aug 9 8:33am
In reply to @rogerdhorton "Hi Pamela - I agree the Docs typically only tell you the minimum. My apt back..." + (show)
@rogerdhorton

Hi Pamela - I agree the Docs typically only tell you the minimum. My apt back in June whilst perusing my Echocardiogram was “blood flow all ok, heart plaque diffuse enough so no issues, oh but hang on you’ve got a 4.4 root / ascending aneurysm but no issues we can review in 12 months - no issues until 5.5. Keep on with your healthy lifestyle and here is a script to double the bp med..”. I had no reaction as I didn’t understand what he was talking about. He then went onto the next patient (1 of several he had to attend to for the rest of the afternoon). I guess they know that if they talk too much at that initial stage they run the risk of needing to talk / respond to ill informed Q’s for a further 5 or 10 minutes and mucking up their schedule ☺️

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I'm sure I'm making a nuisance of myself with my cardiologist because I keep sending questions through the Patient Portal. I get prompt answers from his nurse and she's very helpful and explains things. I believe it's necessary to be assertive (not aggressive) and ask questions and let your medical team know you're anxious. I make no bones about it. I have a follow-up appointment to my July CT scan in September rather than waiting for a year as I was advised to do. A year! I don't want to feel this anxiety for a year. I need some answers now. Research, this group, and messages to my doctor are helping me get a realistic assessment of my condition. Wandering in ignorance is no way to feel safe.

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bitsygirl | @bitsygirl | Aug 9 12:32pm
In reply to @shaylyn4 "Hi.My name is Diane and I’m 781/2 years. I have had an aortic aneurysm for the..." + (show)
@shaylyn4

Hi.My name is Diane and I’m 781/2 years. I have had an aortic aneurysm for the past 20 or so years. It started at 2cm and then about 10 years later it was 4cm where it’s stayed.
In 2009 I had a cardiac event - Takusubo Cardiomyopathy and I was dead for 71/2 minutes. Now I have CAD and atherosclerosis. I’m supposed to be on a heart healthy diet ( whivh I love) but I also have EPI and Gastroparesis so a heart healthy diet is not good for them.Does anyone have any suggestions or recommendations on how I can have a healthy diet for all my medical conditions ?
I go by Shaylyn4

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@shaylyn4: Sorry to hear about your conditions.

I worked for a while with a dietician that focused on heart health. It was a worthwhile experience. I'd suggest you seek out a dietician or other professional for some advice. I think you have a tricky problem to solve.

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shaylyn4 | @shaylyn4 | Aug 11 11:14am

Hi Bitsygirl, Thanks for the advise. I have seen so many nutritionalists and dietitians over the past 10 years. Each was referred by a specialist for one of my conditions.None of them knows how to diet for a heart condition as well as having gastroparesis- two different diets. I try to be low carb and low fat buts it’s hard. I love fresh fruits and vegetables but they aren’t good for the gastroparesis or EPI. So I do my best.Everything is done in moderation.Shaylyn4

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awrupska | @awrupska | Aug 13 2:41pm

Hello, my name is Andy and I am a 53 y/o white male who just recently (this week) found out that I have a 4.7 cm Ascending Aortic Aneurysm. I am 6'2, 225 lbs and have been active all my life. I happened to find this on a routine CT screening for a Cardiac Calcium Score. The only reason why I even asked for the test to be done was for peace of mind. Well, my Calcium score was only 51 but what they did find was the aneurysm (Totally shocked). I have battled my entire life with Anxiety (Probably because I have been a nurse for more than 30 years in ER and my mind goes to the worst situations possible). Now this- How does one cope? Is this a death sentence? My Cardio Vascular Surgeon wants to watch it for 6 months and re-do the CTA to see if it has gotten worse. He stated surgery (Open Heart) is the only way to correct it and that usually is not needed until at least 5.5 or 6 cm, when the risk of not doing the corrective surgery outweighs the risk of surgery. I am sorry I am rambling, but my mind just spins in all of this yuck. Has anyone else been here? Are there people who have lived with this for a while? Can we live a normal life with just some moderation changes? Looking for positives through all of this.

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2 replies
moonboy | @moonboy | Aug 13 2:55pm

Relax. You're going to be okay. You're ahead of 99.9% of all aortic dissection patients because you KNOW. I suffered a complete dissection at age 50 in 2015. I am hear to tell that story. You are going to be okay. The CT will alert them to changes. If your doc says have surgery, have surgery. You can do this. I did it and it was a nightmare to have a sudden and complete Type A1 aortic dissection. BUT: You know in advance. That's the difference between having a blowout at 75MPH on your front right tire vs. making a plan to go into the mechanic's shop and having the tire replaced when you see that it has a bulge. Don't panic. You're not alone. My contact information is attached to my name. Feel free to call or email me directly if you want to talk. I knew nothing about my aorta until it blew and then it was an all-hands-on-deck nightmare scenario (42 minutes from the start of the dissection to undergoing open heart surgery on a business trip in San Diego). If I had known what I was in for, I would have done the surgery well in advance of the ultimate dissection. If you catch it early LIKE YOU HAVE, your chance of full recovery is excellent. You're going to be okay. Call me if you want to chat. I am a non-medical expert on aortic dissections. I can tell you things that the doctors can't because they have never suffered and survived a complete dissection. Peace.

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2 replies
awrupska | @awrupska | Aug 13 3:05pm
In reply to @moonboy "Relax. You're going to be okay. You're ahead of 99.9% of all aortic dissection patients because..." + (show)
@moonboy

Relax. You're going to be okay. You're ahead of 99.9% of all aortic dissection patients because you KNOW. I suffered a complete dissection at age 50 in 2015. I am hear to tell that story. You are going to be okay. The CT will alert them to changes. If your doc says have surgery, have surgery. You can do this. I did it and it was a nightmare to have a sudden and complete Type A1 aortic dissection. BUT: You know in advance. That's the difference between having a blowout at 75MPH on your front right tire vs. making a plan to go into the mechanic's shop and having the tire replaced when you see that it has a bulge. Don't panic. You're not alone. My contact information is attached to my name. Feel free to call or email me directly if you want to talk. I knew nothing about my aorta until it blew and then it was an all-hands-on-deck nightmare scenario (42 minutes from the start of the dissection to undergoing open heart surgery on a business trip in San Diego). If I had known what I was in for, I would have done the surgery well in advance of the ultimate dissection. If you catch it early LIKE YOU HAVE, your chance of full recovery is excellent. You're going to be okay. Call me if you want to chat. I am a non-medical expert on aortic dissections. I can tell you things that the doctors can't because they have never suffered and survived a complete dissection. Peace.

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Thank you so much. It is a great Blessing from GOD to hear you and your positive story and not just think of all the negative things.

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pamela78 | @pamela78 | Aug 14 8:41am
In reply to @moonboy "Relax. You're going to be okay. You're ahead of 99.9% of all aortic dissection patients because..." + (show)
@moonboy

Relax. You're going to be okay. You're ahead of 99.9% of all aortic dissection patients because you KNOW. I suffered a complete dissection at age 50 in 2015. I am hear to tell that story. You are going to be okay. The CT will alert them to changes. If your doc says have surgery, have surgery. You can do this. I did it and it was a nightmare to have a sudden and complete Type A1 aortic dissection. BUT: You know in advance. That's the difference between having a blowout at 75MPH on your front right tire vs. making a plan to go into the mechanic's shop and having the tire replaced when you see that it has a bulge. Don't panic. You're not alone. My contact information is attached to my name. Feel free to call or email me directly if you want to talk. I knew nothing about my aorta until it blew and then it was an all-hands-on-deck nightmare scenario (42 minutes from the start of the dissection to undergoing open heart surgery on a business trip in San Diego). If I had known what I was in for, I would have done the surgery well in advance of the ultimate dissection. If you catch it early LIKE YOU HAVE, your chance of full recovery is excellent. You're going to be okay. Call me if you want to chat. I am a non-medical expert on aortic dissections. I can tell you things that the doctors can't because they have never suffered and survived a complete dissection. Peace.

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Thank you so much for your encouraging posts. It's good to know you're available. That's very kind of you.

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pamela78 | @pamela78 | Aug 14 8:45am
In reply to @awrupska "Hello, my name is Andy and I am a 53 y/o white male who just recently..." + (show)
@awrupska

Hello, my name is Andy and I am a 53 y/o white male who just recently (this week) found out that I have a 4.7 cm Ascending Aortic Aneurysm. I am 6'2, 225 lbs and have been active all my life. I happened to find this on a routine CT screening for a Cardiac Calcium Score. The only reason why I even asked for the test to be done was for peace of mind. Well, my Calcium score was only 51 but what they did find was the aneurysm (Totally shocked). I have battled my entire life with Anxiety (Probably because I have been a nurse for more than 30 years in ER and my mind goes to the worst situations possible). Now this- How does one cope? Is this a death sentence? My Cardio Vascular Surgeon wants to watch it for 6 months and re-do the CTA to see if it has gotten worse. He stated surgery (Open Heart) is the only way to correct it and that usually is not needed until at least 5.5 or 6 cm, when the risk of not doing the corrective surgery outweighs the risk of surgery. I am sorry I am rambling, but my mind just spins in all of this yuck. Has anyone else been here? Are there people who have lived with this for a while? Can we live a normal life with just some moderation changes? Looking for positives through all of this.

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You're not alone. I find it so helpful to know that others are in the same boat as I am. This is scary but I think of it as a wake-up call or a jolt to remind me to pay attention to how I spend my time and live my life to the fullest. We're all going to go someday, but this time can be all the sweeter for this new perspective.

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awrupska | @awrupska | Aug 14 11:08am

Thank you both so much for reaching out and you both are 100% correct. We are ahead of the game and this is a wake up call for me. Appreciate everyday, look at things a little differently and adjust how I choose to spend my time.

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pittsburghdad | @pittsburghdad | Aug 14 1:58pm
In reply to @awrupska "Hello, my name is Andy and I am a 53 y/o white male who just recently..." + (show)
@awrupska

Hello, my name is Andy and I am a 53 y/o white male who just recently (this week) found out that I have a 4.7 cm Ascending Aortic Aneurysm. I am 6'2, 225 lbs and have been active all my life. I happened to find this on a routine CT screening for a Cardiac Calcium Score. The only reason why I even asked for the test to be done was for peace of mind. Well, my Calcium score was only 51 but what they did find was the aneurysm (Totally shocked). I have battled my entire life with Anxiety (Probably because I have been a nurse for more than 30 years in ER and my mind goes to the worst situations possible). Now this- How does one cope? Is this a death sentence? My Cardio Vascular Surgeon wants to watch it for 6 months and re-do the CTA to see if it has gotten worse. He stated surgery (Open Heart) is the only way to correct it and that usually is not needed until at least 5.5 or 6 cm, when the risk of not doing the corrective surgery outweighs the risk of surgery. I am sorry I am rambling, but my mind just spins in all of this yuck. Has anyone else been here? Are there people who have lived with this for a while? Can we live a normal life with just some moderation changes? Looking for positives through all of this.

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Andy,
My situation is pretty similar to yours. I am 5 years older, a little taller, and about 20 pounds lighter than you and have been a competitive marathoner and rower for a good portion of my adult life. Also found via a precautionary CT scan for a calcium score. I'm at 5.0. Found out less than 6 months ago and am heading back for 6 month follow-up scan in a little over a month. It's been an adjustment in a number of ways and has taken me some time, so you should expect the mental sorting out process to take you some time as well (I've read studies that depression amongst people who were newly-diagnosed is not uncommon). For me, exercise has been a stress reliever and learning to dial back on the intensity of exercise while still exercising has been an adjustment. It's also been challenging because doctors tend not to give you objective guidelines for these things (I use a heart monitor to generally keep in a "zone 2" level of intensity and don't do any heavy lifting). My doc told me at 5.0 I am in a "gray" zone where most insurance will cover surgery, but I have some discretion about whether to wait until it hits 5.5 (which will likely be sometime in the next five years based on an average annual progression of 0.1) or elect to have it done now. Initially, I was leaning toward a wait and see approach, but more recently have been thinking about just having the procedure done later this year since I would be a decent candidate for successful surgery and for peace of mind. Good luck to you. The stories of others who have gone through this does help.

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