Mended Hearts Open Forum

Hello.  A 4.2 cm dialation of my ascending aorta was found incidentally on a CT calcium scan. This was back in June. Doc sent me for an echo because he thought the CT was 'overstated' and the echo measured 3.9. I went to a cardiologist last week who said to trust the CT as Being the most accurate. I am so sad and upset over this finding. I don't have high BP (at least that has ever been noticed), I am overweight but not obese, I have high triglycerides, my calcium score was zero,  no family history or connective tissue's diseases. I'm 63. The cardiologist put me on a low dose beta blocker and referred me to an aortic surgeon for follow up. cardiologist says mine is considered mild to moderate. I keep hoping someone has made a mistake and I'm a little in shock over this. Does anyone have any words of encouragement or advice? I'm having a tough time focusing on anything. I'm retired and want to enjoy my life but I'm so worried of dropping dead. 

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Cindy M
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Hi Cindy,

I think everybody here who was told they had some kind of aneurysm was at first freaked out. I know I was. I was around 60. As you will soon find out, as you hear from others in this forum – and you will – people of all ages have found they had aneurysms. Some have had to have them repaired. Some haven't (yet, and may never need to!) Nobody can say with certainty how fast or slowly YOURS will grow. 

I HIGHLY recommend you watch this video by Dr. Roselli at the Cleveland Clinic. It goes into detail about when surgery is required. It's the best video on the subject I've seen. He explains it calmly and well.

To show you how tricky this is: I had been getting echos for around 40 years to watch my valve, which was leaky. During much of that time my ascending aorta was in the 4.0-4.2 range, based on the echos. In 2013 a cardiologist recommended I get a baseline CT for my aorta. It turns out it was around 4.5.

At that time I thought "aneurysm" meant the hose was about to burst. That's not the case. I started getting alternating my annual echos with MRIs (as opposed to CTs, b/c of less radiation.) I also was able to find a machine that would get "close enough" measurements without contrast. (You have to ask for this; mine were done here in San Diego at Scripps.) As my aneurysm expanded, I went to 2x annual scans, alternating echo/CT. Then 4x, before we figured it was time to get serious.

In my case, in more recent years, I double-consulted with Dr. Svensson at Cleveland. After a few years of consultation, he said it was time to get MORE serious.

Here's the interesting part: In the end, while my aneurysm was about 4.9cm, it was the level of deterioration of my valve that dictated surgery. Dr. Svensson, who is widely regarded as one of the best, said specifically that if it had been based on my aorta alone he would not have done the surgery. The important message for you is that your aorta can be nonsurgical for years. And if it's just the aorta, it may be possible to repair without actual surgery. The key is to get your annual scans. 

I had my surgery a little less than two years ago at 67: Valve, root, ascending aorta, CABGx1 (single bypass.) My scar is rapidly disappearing. If it wasn't there I wouldn't know anything had been done. 

Trust me when I can say: You didn't just get a death sentence. You have actually been given a new lease on life. You are among the lucky people who found it before it found you.

Cheers,
Herb


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Herb Greenberg
San Diego CA
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Cindy,

Back in 2018, I was diagnosed with a 5.1 cm aneurism on my ascending aorta. I had a cough that led me into get a chest x Ray. They found the aneurism on the x Ray. The cough was a blessing from God. Had I not had the cough, I would have knew I had the aneurism, and may not be here today. I was very surprised, as I was in good health, and didn't have any symptoms. I was exercising frequently. Once I found out I needed surgery to repair it, I was struck by fear of having to go through the surgery, and not knowing the outcome, or how recovery would be. So, I ended up putting the surgery off a couple times. I finally realized that if I wanted to be here for my family along with those care about me, that I should fix the problem when I have the opportunity to do so. So I had the surgery back on October 30th 2021. The surgery went well. I was out of the hospital in three days, and recovery went well. I'm almost 11 months post surgery, and was back to lifting weights 3 months after surgery. I exercise 6 days a week now. I can understand your sense of shock over this. I felt the same way when diagnosed. You will get through this. I'll pray for you as well. If you have a good team of doctors, you will be in good hands. It's good they found this now, when it's still smaller. So now they can monitor you up until the time surgery is needed which may be awhile away.

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Scott Woodward
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Original Message:
Sent: 08-28-2021 10:02
From: Herb Greenberg
Subject: Dilation of the Ascending Aorta

Hi Cindy,

I think everybody here who was told they had some kind of aneurysm was at first freaked out. I know I was. I was around 60. As you will soon find out, as you hear from others in this forum – and you will – people of all ages have found they had aneurysms. Some have had to have them repaired. Some haven't (yet, and may never need to!) Nobody can say with certainty how fast or slowly YOURS will grow.

I HIGHLY recommend you watch this video by Dr. Roselli at the Cleveland Clinic. It goes into detail about when surgery is required. It's the best video on the subject I've seen. He explains it calmly and well.

To show you how tricky this is: I had been getting echos for around 40 years to watch my valve, which was leaky. During much of that time my ascending aorta was in the 4.0-4.2 range, based on the echos. In 2013 a cardiologist recommended I get a baseline CT for my aorta. It turns out it was around 4.5.

At that time I thought "aneurysm" meant the hose was about to burst. That's not the case. I started getting alternating my annual echos with MRIs (as opposed to CTs, b/c of less radiation.) I also was able to find a machine that would get "close enough" measurements without contrast. (You have to ask for this; mine were done here in San Diego at Scripps.) As my aneurysm expanded, I went to 2x annual scans, alternating echo/CT. Then 4x, before we figured it was time to get serious.

In my case, in more recent years, I double-consulted with Dr. Svensson at Cleveland. After a few years of consultation, he said it was time to get MORE serious.

Here's the interesting part: In the end, while my aneurysm was about 4.9cm, it was the level of deterioration of my valve that dictated surgery. Dr. Svensson, who is widely regarded as one of the best, said specifically that if it had been based on my aorta alone he would not have done the surgery. The important message for you is that your aorta can be nonsurgical for years. And if it's just the aorta, it may be possible to repair without actual surgery. The key is to get your annual scans.

I had my surgery a little less than two years ago at 67: Valve, root, ascending aorta, CABGx1 (single bypass.) My scar is rapidly disappearing. If it wasn't there I wouldn't know anything had been done.

Trust me when I can say: You didn't just get a death sentence. You have actually been given a new lease on life. You are among the lucky people who found it before it found you.

Cheers,
Herb


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Herb Greenberg
San Diego CA
------------------------------

I agree with Herb, Cindy.  The initial shock of the diagnosis will subside as you learn more, hear from people, and gain trust in your medical team. Don't be shy about asking questions.

 If anxiety persists, talk about a mild  drug to help you over any rough patches. And don't be embarrassed about it. Meditate, dive into your favorite music, keep up with family and friends. Dropping dead is highly unlikely.  Rather, you've been given an invitation to live each day more fully.

I am a year out from a CABG with complications and areas of poor perfusion that can't be stented. I'm being followed at Cleveland Clinic and trust their skills with medications for this.  I rarely think about my heart these days.

Stay in touch. Being under observation is a blessing; you can relax and be grateful to know about it and have experts follow you.

Peace and be of good cheer, 
DE

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Doris Edwards
Retired RN
Dublin, Ohio
------------------------------

Original Message:
Sent: 08-28-2021 10:02
From: Herb Greenberg
Subject: Dilation of the Ascending Aorta

Hi Cindy,

I think everybody here who was told they had some kind of aneurysm was at first freaked out. I know I was. I was around 60. As you will soon find out, as you hear from others in this forum – and you will – people of all ages have found they had aneurysms. Some have had to have them repaired. Some haven't (yet, and may never need to!) Nobody can say with certainty how fast or slowly YOURS will grow.

I HIGHLY recommend you watch this video by Dr. Roselli at the Cleveland Clinic. It goes into detail about when surgery is required. It's the best video on the subject I've seen. He explains it calmly and well.

To show you how tricky this is: I had been getting echos for around 40 years to watch my valve, which was leaky. During much of that time my ascending aorta was in the 4.0-4.2 range, based on the echos. In 2013 a cardiologist recommended I get a baseline CT for my aorta. It turns out it was around 4.5.

At that time I thought "aneurysm" meant the hose was about to burst. That's not the case. I started getting alternating my annual echos with MRIs (as opposed to CTs, b/c of less radiation.) I also was able to find a machine that would get "close enough" measurements without contrast. (You have to ask for this; mine were done here in San Diego at Scripps.) As my aneurysm expanded, I went to 2x annual scans, alternating echo/CT. Then 4x, before we figured it was time to get serious.

In my case, in more recent years, I double-consulted with Dr. Svensson at Cleveland. After a few years of consultation, he said it was time to get MORE serious.

Here's the interesting part: In the end, while my aneurysm was about 4.9cm, it was the level of deterioration of my valve that dictated surgery. Dr. Svensson, who is widely regarded as one of the best, said specifically that if it had been based on my aorta alone he would not have done the surgery. The important message for you is that your aorta can be nonsurgical for years. And if it's just the aorta, it may be possible to repair without actual surgery. The key is to get your annual scans.

I had my surgery a little less than two years ago at 67: Valve, root, ascending aorta, CABGx1 (single bypass.) My scar is rapidly disappearing. If it wasn't there I wouldn't know anything had been done.

Trust me when I can say: You didn't just get a death sentence. You have actually been given a new lease on life. You are among the lucky people who found it before it found you.

Cheers,
Herb


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Herb Greenberg
San Diego CA
------------------------------

Herb, 
Thank you so much for posting your journey. It's really helpful and feels hopeful. 
 ~ Lisa

------------------------------
Lisa Malmar
------------------------------

Original Message:
Sent: 08-28-2021 10:02
From: Herb Greenberg
Subject: Dilation of the Ascending Aorta

Hi Cindy,

I think everybody here who was told they had some kind of aneurysm was at first freaked out. I know I was. I was around 60. As you will soon find out, as you hear from others in this forum – and you will – people of all ages have found they had aneurysms. Some have had to have them repaired. Some haven't (yet, and may never need to!) Nobody can say with certainty how fast or slowly YOURS will grow.

I HIGHLY recommend you watch this video by Dr. Roselli at the Cleveland Clinic. It goes into detail about when surgery is required. It's the best video on the subject I've seen. He explains it calmly and well.

To show you how tricky this is: I had been getting echos for around 40 years to watch my valve, which was leaky. During much of that time my ascending aorta was in the 4.0-4.2 range, based on the echos. In 2013 a cardiologist recommended I get a baseline CT for my aorta. It turns out it was around 4.5.

At that time I thought "aneurysm" meant the hose was about to burst. That's not the case. I started getting alternating my annual echos with MRIs (as opposed to CTs, b/c of less radiation.) I also was able to find a machine that would get "close enough" measurements without contrast. (You have to ask for this; mine were done here in San Diego at Scripps.) As my aneurysm expanded, I went to 2x annual scans, alternating echo/CT. Then 4x, before we figured it was time to get serious.

In my case, in more recent years, I double-consulted with Dr. Svensson at Cleveland. After a few years of consultation, he said it was time to get MORE serious.

Here's the interesting part: In the end, while my aneurysm was about 4.9cm, it was the level of deterioration of my valve that dictated surgery. Dr. Svensson, who is widely regarded as one of the best, said specifically that if it had been based on my aorta alone he would not have done the surgery. The important message for you is that your aorta can be nonsurgical for years. And if it's just the aorta, it may be possible to repair without actual surgery. The key is to get your annual scans.

I had my surgery a little less than two years ago at 67: Valve, root, ascending aorta, CABGx1 (single bypass.) My scar is rapidly disappearing. If it wasn't there I wouldn't know anything had been done.

Trust me when I can say: You didn't just get a death sentence. You have actually been given a new lease on life. You are among the lucky people who found it before it found you.

Cheers,
Herb


------------------------------
Herb Greenberg
San Diego CA
------------------------------

Hi Cindy, I'm a Cindy too and also found an aortic aneurysm 4.3 just last week while checking a spot out in my lung which was fine.  I started bp meds and statin I also take Xanax because I'm terribly anxious. Reading the responses has actually helped calm me down some. I'm 50 and our last child has moved out and my husband and I were ready for our time I'm struggling focusing on anything else too.  Prayers for you!

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cindy jones
self employed
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Hello Cindy Jones

It's a kick in the teeth to learn you have to deal with a scary health problem just as you and your husband are entering a new phase of your lives. It's understandable to be angry as well as anxious. I'm glad you have the Xanax to take the edge off and you will smooth out. I have with a small dose of clonazapam. 

Stay in touch. There's an old saying: "Forewarned is forearmed." You'll be ok

DE

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Doris Edwards
Retired RN
Dublin, Ohio
------------------------------

Original Message:
Sent: 08-29-2021 22:43
From: cindy jones
Subject: Dilation of the Ascending Aorta

Hi Cindy, I'm a Cindy too and also found an aortic aneurysm 4.3 just last week while checking a spot out in my lung which was fine.  I started bp meds and statin I also take Xanax because I'm terribly anxious. Reading the responses has actually helped calm me down some. I'm 50 and our last child has moved out and my husband and I were ready for our time I'm struggling focusing on anything else too.  Prayers for you!

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cindy jones
self employed
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Thank you Doris!

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cindy jones
self employed
------------------------------

Original Message:
Sent: 08-31-2021 09:40
From: Doris Edwards
Subject: Dilation of the Ascending Aorta

Hello Cindy Jones

It's a kick in the teeth to learn you have to deal with a scary health problem just as you and your husband are entering a new phase of your lives. It's understandable to be angry as well as anxious. I'm glad you have the Xanax to take the edge off and you will smooth out. I have with a small dose of clonazapam.

Stay in touch. There's an old saying: "Forewarned is forearmed." You'll be ok

DE

------------------------------
Doris Edwards
Retired RN
Dublin, Ohio
------------------------------


Original Message:
Sent: 08-29-2021 22:43
From: cindy jones
Subject: Dilation of the Ascending Aorta

Hi Cindy, I'm a Cindy too and also found an aortic aneurysm 4.3 just last week while checking a spot out in my lung which was fine.  I started bp meds and statin I also take Xanax because I'm terribly anxious. Reading the responses has actually helped calm me down some. I'm 50 and our last child has moved out and my husband and I were ready for our time I'm struggling focusing on anything else too.  Prayers for you!

------------------------------
cindy jones
self employed

Hi, Cindy.

Hang in there! I had the same "rock my world" moment when I learned I had an ascending aortic aneurysm (4.3 cm), aortic root aneurysm, and bicuspid aortic valve. Talking to former patients and cardiologists who have an expertise with aortic aneurysms helped me a lot. A cardiologist who is a coauthor on national guidance for when to do surgery explained to me that growth often is slow and that annual monitoring would be important to reassess when the best time for surgery would be. He said it might be 5 to 7 years -- turned out he was right. I had it done two years ago and am happy it's behind me.

For more on my story, see https://mendedhearts.org/my-heart-journey-so-far/

Take care,
Peter

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Peter Eglinton
Portland ME
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Hello Cindy - You are not alone. I just got a similar finding. I was having some chest pain and an "abnormal" EKG so my Dr. sent me to a cardiologist that sent me for an echo and echo-stress test. Everything looked good except that I have a dilation of my ascending aorta that's at 4.03 - I haven't had the follow up CT yet. I'm 58, overweight, high cholesterol but good triglycerides, no high BP, no connective tissue disease or family history. Yet, here I am (and you are) and I'm feeling devastated and really, really scared. I feel exactly as you do and I'm not sure what to do. Found this forum in hopes it would provide me both hope and piece of mind. Big hugs to you and everyone going through this...

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Lisa Malmar
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