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Cmf2p

Member
Joined
May 6, 2021
Messages
19
I am a new member and just happened to find this website as I was freaking out about my situation. I am a 37 year old male who had AVR with a St jude at the age of 12, in 1996, due to endocarditis and then again in 1999 cause my heart was bigger and the valve was leaking. I have been relatively healthy since then and I have always done whatever I wanted to within my physical limitations. Recently I learned from an un related ct scan of my lungs that I had a 43mm dilatation of the ascending aorta which has triggered anxiety and panic, making me very upset. I also learned that it seems to have grown between 3 and 5 mm in the last year based on last years echo to my current echo yesterday, which the cardiologist knew but didnt want to worry me because he knew I would freak out, which is what I am doing. Just looking for guidance on how others dealt with a similar situation and how they were able to wait and see 6 months at a time.
 
Last edited:
Cmf2p said:
I am a new member and just happened to find this website as I was freaking out about my situation. I am a 37 year old male who had AVR with a St jude at the age of 12, in 1996, due to endocarditis and then again in 1999 cause my heart was bigger and the valve was leaking. I have been relatively healthy since then and I have always done whatever I wanted to within my physical limitations. Recently I learned from an un realted ct scan of my lungs that I had a 43mm dilatation of the ascending aorta which has triggered anxiety and panic, making me very upset. I also learned that it seems to have grown between 3 and 5 mm in the last year based on last years echo to my current echo yesterday, which the cardiologist knew but didnt want to worry me because he knew I would freak out, which is what I am doing. Just looking for guidance on how others dealt with a similar situation and how they were able to wait and see 6 months at a time.
Click to expand...
Welcome to the forum! You have come to the right place for support for this issue. I can't add much, as I am not a repeat surgery patient, having my first AVR 6 weeks ago.
However, there are several here who have had similar experience as you have and I'm sure they will be along soon to give your their thoughts and support.
What type of valve do you currently have? It looks like you had a St. Jude at age 12- did they put in another St Jude in at age 15? What size? I would guess it is mechanical, is this correct? Where did you have your previous operations?
 
Chuck C said:
Welcome to the forum! You have come to the right place for support for this issue. I can't add much, as I am not a repeat surgery patient, having my first AVR 6 weeks ago.
However, there are several here who have had similar experience as you have and I'm sure they will be along soon to give your their thoughts and support.
What type of valve do you currently have? It looks like you had a St. Jude at age 12- did they put in another St Jude in at age 15? What size? I would guess it is mechanical, is this correct? Where did you have your previous operations?
Click to expand...
The second valve is a 23mm st jude mechanical, I had it done at centennial medical center in Nashville and my first surgery was emergency surgery at Vanderbilt in Nashville. I showed up to the ER about dead with a severly destroyed aortic valve due to endocarditis. I was sick for weeks but the dr's kept saying I had bronchitis and threw pills at me thinking it would work. My dad got fed up and just took me to the hospital because he knew it was more.
 
Cmf2p said:
The second valve is a 23mm st jude mechanical, I had it done at centennial medical center in Nashville and my first surgery was emergency surgery at Vanderbilt in Nashville. I showed up to the ER about dead with a severly destroyed aortic valve due to endocarditis. I was sick for weeks but the dr's kept saying I had bronchitis and threw pills at me thinking it would work. My dad got fed up and just took me to the hospital because he knew it was more.
Click to expand...
Do you happen to know the size of the valve that they put in when you were 12? In that you outgrew it in only 3 years makes me wonder if it was relatively small.
 
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Cmf2p said:
I am a new member and just happened to find this website as I was freaking out about my situation. I am a 37 year old male who had AVR with a St jude at the age of 12, in 1996, due to endocarditis and then again in 1999 cause my heart was bigger and the valve was leaking. I have been relatively healthy since then and I have always done whatever I wanted to within my physical limitations. Recently I learned from an un related ct scan of my lungs that I had a 43mm dilatation of the ascending aorta which has triggered anxiety and panic, making me very upset. I also learned that it seems to have grown between 3 and 5 mm in the last year based on last years echo to my current echo yesterday, which the cardiologist knew but didnt want to worry me because he knew I would freak out, which is what I am doing. Just looking for guidance on how others dealt with a similar situation and how they were able to wait and see 6 months at a time.
Click to expand...

Sounds familiar, except my condition was known and followed in childhood so I was able to delay the replacement until just before I turned 18. At 36, an echo showed a dilated aortic root. No mention of it before. But I had them check old echos and it had grown quite a bit in the prior two years. So they followed that with a CT scan that showed it was almost 5 cm’s. The only plus I’ll say for mine is they went ahead and scheduled surgery to get it taken care of based on the rate of change. So I didn’t have to do the every six months but.

So I guess what I’d recommend is a more precise measurement (CT or MRI) if you can. Then decide how much to freak out. I know the feeling of having that in your chest and just wanting it fixed.
 
Chuck C said:
Do you happen to know the size of the valve that they put in when you were 12? In that you outgrew it in only 3 years makes me wonder if it was relatively small.
Click to expand...
I think it was a 19mm at the age of 12
 
Superman said:
Sounds familiar, except my condition was known and followed in childhood so I was able to delay the replacement until just before I turned 18. At 36, an echo showed a dilated aortic root. No mention of it before. But I had them check old echos and it had grown quite a bit in the prior two years. So they followed that with a CT scan that showed it was almost 5 cm’s. The only plus I’ll say for mine is they went ahead and scheduled surgery to get it taken care of based on the rate of change. So I didn’t have to do the every six months but.

So I guess what I’d recommend is a more precise measurement (CT or MRI) if you can. Then decide how much to freak out. I know the feeling of having that in your chest and just wanting it fixed.
Click to expand...
What procedure did they do and where did you have it done?
 
Cmf2p said:
What procedure did they do and where did you have it done?
Click to expand...

Spectrum Health in Grand Rapids, MI. Bental Procedure. They resized my St Jude so I replaced my first mechanical valve (23mm’s) with a new mechanical valve (25mm’s) / graft one piece to replace the offending section of aorta.

I think my echo showed 4.3 cm’s on the aortic root, but the CT scan revealed a couple weak spots in my aorta from where they connected the bypass for my first surgery. Those areas bulged to 4.9 cm’s, which the echo didn’t show. I didn’t have to wait long. First picked up in late August I think. Surgery by mid-October of 2009. It’ll be 12 years this year. 31 years since my first surgery.
 
Superman said:
Spectrum Health in Grand Rapids, MI. Bental Procedure. They resized my St Jude so I replaced my first mechanical valve (23mm’s) with a new mechanical valve (25mm’s) / graft one piece to replace the offending section of aorta.

I think my echo showed 4.3 cm’s on the aortic root, but the CT scan revealed a couple weak spots in my aorta from where they connected the bypass for my first surgery. Those areas bulged to 4.9 cm’s, which the echo didn’t show. I didn’t have to wait long. First picked up in late August I think. Surgery by mid-October of 2009. It’ll be 12 years this year. 31 years since my first surgery.
Click to expand...
Thats awesome that you are still going strong after 31 years. I have almost 25 years since my first surgery. Thats crazy that they didnt see that in the echo, good thing you had that ct. I just happened to have a ct the other day for a lung test and they noted a 43mm dilatation of the ascending aorta. I asked my cardiologist about it and he seemed a little surprised. He doesnt seem worried but I am and want to have it taken care of. It is crazy how they focus so much on the valve in the echos's, that they can miss other issues.
 
You had endocarditis which motivated the first valve surgery. So the valve may have been an abnormal valve such as a bicuspid aortic valve or it may have not. It is well know that there is an association with progressive dilatation of the ascending aorta with bicuspid valves. So if you did have a bicuspid valve and your aorta is enlarging you will likely need to deal with that. If you didn't have a bicuspid valve and the anatomy of the original valve was normal than the aortic enlargement may not be as progressive. So clearly it needs to be monitored and if it does enlarge than you will need surgery. I had two aortic valve surgeries for a stenotic bicuspid valve first with a tissue valve that failed in 5 1/2 years and then a St. Jude which lasted for 20 years until my aorta was found to be 6.5 cm. I had a third St. Jude with a dacron prosthesis for the ascending aorta at age 58. Now 72 and going out for a 30+ mile bike ride this morning.
Good luck.
 
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Intervention for an aortic aneurysm is generally not done until it reaches 5.5cm, possibly earlier depending on body size and other conditions. As with valve issues follow-up echo's are usually done once a year with a CT every couple years, sooner if it is larger or fast growing. Growth rates are typically 1-2mm per year so yours may be faster but echo measurements can easily be off by a few mm (which may be why the Dr was not so alarmed at the difference), thus the CT scan. Unlike with moderate valve issues, those with aortic aneurysm are usually advised to limit physical activity, particularly heavy weight lifting, contact sports, and even intense aerobic activity while moderate aerobic activity is often recommended. I think that it is considered an aortic aneurysm after 4.5cm and less than that is a dilated aorta which may or may not suggest physical limitations. All things to discuss with your cardiologist or if you are not happy with them, find a good cardiologist or cardio thoracic surgeon for a second opinion. I had a BAV aortic aneurysm repair done and after had moderate valve leakage. The numbers on the echo were worrying to me so I had a 2nd opinion that basically said the same as the first: my heart was functioning better than the numbers imply. It was good to hear this from another source so I knew it wasn't just someone trying to put an optimistic spin on it.
 
Hi and welcome to the form
Cmf2p said:
Recently I learned from an un related ct scan of my lungs that I had a 43mm dilatation of the ascending aorta
Click to expand...
as suggested its simply a watch and wait situation.

I too have had a bental procedure and replaced my valve as well for the third time in 2011

As mentioned by AZ above 55m is normally the time for intervention and it may well be that none will be needed (I've seen that happen)

This page has some good information: RACGP - Aortic aneurysms – screening, surveillance and referral


Abdominal aortic aneurysm (AAA) is rare in people aged less than 50 years, but prevalence then rises sharply with increasing age. Abdominal aortic aneurysm affects approximately 4–7% of men and 1–2% of women over the age of 65 years.2–5 Established risk factors for AAA include advancing age, male gender, smoking and family history (Table 1).2​
​
Table 1. AAA risk factors​
​
  • Advancing age
    • Male gender
    • Smoking
    • Family history
    • Atherosclerosis
    • Hypertension
    • Hypercholesterolaemia
    • Other vascular aneurysm



as well as this page:
https://www.anzsvs.org.au/patient-information/aortic-aneurysm/
When an aneurysm reaches 5.5 cms most surgeons would consider offering surgical intervention. This is because, at this size, the aneurysm has a greater risk of rupture. It then becomes as safe to have an operation to repair the aneurysm, as it is to leave the aneurysm alone. Surgery may also be considered if your aneurysm is rapidly expanding on regular scans or it starts to cause other complications (see above). Rapid expansion means more than 7mm in 6 months or 10mm in one year.​

Remember to keep telling yourself that panic achieves nothing, especially panic over something which is not as risky as driving a car and touching your phone.
Some advice from a philosopher nearly 2000 years ago

1620433205821.png


in particular the points: don't be anxious and fix your eyes on what nature demands you do (monitor it, feed yourself, remain healthy ... the usual stuff).

Hopefully knowledge will bring an end to anxiety
 
pellicle said:
Hi and welcome to the form

as suggested its simply a watch and wait situation.

I too have had a bental procedure and replaced my valve as well for the third time in 2011

As mentioned by AZ above 55m is normally the time for intervention and it may well be that none will be needed (I've seen that happen)

This page has some good information: RACGP - Aortic aneurysms – screening, surveillance and referral


Abdominal aortic aneurysm (AAA) is rare in people aged less than 50 years, but prevalence then rises sharply with increasing age. Abdominal aortic aneurysm affects approximately 4–7% of men and 1–2% of women over the age of 65 years.2–5 Established risk factors for AAA include advancing age, male gender, smoking and family history (Table 1).2​
​
Table 1. AAA risk factors​
​
  • Advancing age
    • Male gender
    • Smoking
    • Family history
    • Atherosclerosis
    • Hypertension
    • Hypercholesterolaemia
    • Other vascular aneurysm



as well as this page:
https://www.anzsvs.org.au/patient-information/aortic-aneurysm/
When an aneurysm reaches 5.5 cms most surgeons would consider offering surgical intervention. This is because, at this size, the aneurysm has a greater risk of rupture. It then becomes as safe to have an operation to repair the aneurysm, as it is to leave the aneurysm alone. Surgery may also be considered if your aneurysm is rapidly expanding on regular scans or it starts to cause other complications (see above). Rapid expansion means more than 7mm in 6 months or 10mm in one year.​

Remember to keep telling yourself that panic achieves nothing, especially panic over something which is not as risky as driving a car and touching your phone.
Some advice from a philosopher nearly 2000 years ago

View attachment 887802

in particular the points: don't be anxious and fix your eyes on what nature demands you do (monitor it, feed yourself, remain healthy ... the usual stuff).

Hopefully knowledge will bring an end to
Click to expand...
 
Thanks for the info. I have been doing my best to cope with the situation it just sucks dealing with an unknown out of anyones control. How long did you have to live with the knowledge of an aneurysm and how did you cope. I just cant shake the worry of having a dissection even though I am trying to do all that I can to limit risk associated with such an event.
 
I was able to get in touch with a surgeon at Vanderbilt and he did a proper CT with 3D modeling and didnt seem to worried about the aneurysm. He officially stated that it was 4.4cm and told me to come back in 6 months. It was helpful in the beginning but as time goes by the worry grows.
 
Cmf2p said:
How long did you have to live with the knowledge of an aneurysm and how did you cope.
Click to expand...
about 4 months IIRC
how I coped was to know that there was absolutely fully 100% nothing I could do about it, so I just went about doing what needed to be done:
  • went to work
  • did projects around the house
  • behaved normally
  • discussed things with my wife
Eg

https://cjeastwd.blogspot.com/2011/07/solar-floor-heating-part-2.html


Anxiety serves no purpose, and many many years ago I developed the view that if I couldn't influence something to not waste my time on it (maybe learn about it if I was interested) and focus on what I could do. Time goes by and if you ignore what needs to be done and don't do it then you pay for that.

It is my observation that people by and large (like >90%) live in a constructed story of how they see themselves. Me, I've been very aware of all my limitations and know "what might happen" but (aside from when I'm doing an assessment of "is that a dumb thing to do") focus on doing and accepting.

Maybe I was lucky to have my own heart condition identified as a child and I grew up fighting against people telling me what I could or could not do and sought to find my own limits.

https://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html
I can only suggest reading and fully grokking the wisdom of the stoics

Marcus Aurelius
1627421943612.png

Seneca
1627422006668.png


and Epictetus
1627421971643.png


Peace (like change) comes from within

I wish you peace
 
Cmf2p said:
was able to get in touch with a surgeon at Vanderbilt and he did a proper CT with 3D modeling and didnt seem to worried about the aneurysm. He officially stated that it was 4.4cm and told me to come back in 6 months.
Click to expand...
this is excellent news ... as watch list means you may never need surgery. Usually 5cm is the point of change.

Just refer to my above post for what I think you should do and find a suitable garbage bin to put your anxiety in ... something which is for "problem or toxic waste"

This video may (or may not) have some helpful ideas


Best Wishes
 
pellicle said:
this is excellent news ... as watch list means you may never need surgery. Usually 5cm is the point of change.

Just refer to my above post for what I think you should do and find a suitable garbage bin to put your anxiety in ... something which is for "problem or toxic waste"

This video may (or may not) have some helpful ideas


Best Wishes
Click to expand...

I appreacite the insight and wisdom. I will check out the video and blogs. Thanks for the help.
 
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