Newbie ascending aorta aneurysm

[deancass2000]

Hello,
Recently diagnosed with 4.2cm dilated ascending aorta. Im a 55 yr old male.
Doc says “watch and wait”, ct scans every 6 mths and NO Lifting!!! Possible valve replacement when doing surgery on the aorta. Watch and wait is killing me!
How do you guys cope with the watch and wait phase? Driving me nuts. After surgery, do patients normally have any restrictions or not?

 

[Unicusp]

Hello,
Recently diagnosed with 4.2cm dilated ascending aorta. Im a 55 yr old male.
Doc says “watch and wait”, ct scans every 6 mths and NO Lifting!!! Possible valve replacement when doing surgery on the aorta. Watch and wait is killing me!
How do you guys cope with the watch and wait phase? Driving me nuts. After surgery, do patients normally have any restrictions or not?

Hello. Do you have a CT from a previous time to look at change? How tall are you? 4.2 is not significantly large, especially if you are tall. Need to look at rate of change and future increases in size which may not happen. Mine was 5.4 when I went for surgery, and I monitored mine for 2 years. My brother has been monitoring his for 10 years now, and his is holding at 4.2. Do you have a BAV? What is your valve issue? Hang in there. It's not that bad.

 

[gpr100rs]

Unicusp has it right. I was at 4.5 for several years, but with a steadily deteriorating bicuspid valve. I had no restrictions, I continued to play squash and was relatively active but for the COVID lockdown thru 2020. About a year ago, I had my valve replaced along with a dacron ascending aorta graft, but the aneurysm was still 4.5, which is generally the cut off point to do the repair. I have no cardiac restrictions and feel fine. There is an association between ascending aortic aneurysms and BAV and, while serious, don't appear to have the same complication rate compared with aneurysms associated with other issues like marfans. So, if you have a BAV, it is likely that will drive you to surgery before the aneurysm. I had my regular yearly echo; CT every 6 months seems a little aggressive.

 

[Cmf2p]

I had AVR at age 12 and 15 for endocarditis and have been doing good since then, now 38. Last year in April it was discovered that I had a 4.3 Ascending Aneurysm and they said the same thing as your dr did. No lifting and ct every 6 months. Now it has been almost a year and luckily it seems to be stable at 4.3.

I have seen drs at Cleveland Clinic and Vanderbilt and they all have said a yearly echo should be fine and to just do my normal activity but dont do exercises that force you too hold your breath and exert heavily. I was just like you with the watch and wait, and still have days where I worry. Nothing you can really do about it other than live your life and be cautious in your activity.

They did put me on low dose metoprolol er which has lowered my bp a little and actually has helped me with the anxiety around the whole situation.

 

[deancass2000]

Hello. Do you have a CT from a previous time to look at change? How tall are you? 4.2 is not significantly large, especially if you are tall. Need to look at rate of change and future increases in size which may not happen. Mine was 5.4 when I went for surgery, and I monitored mine for 2 years. My brother has been monitoring his for 10 years now, and his is holding at 4.2. Do you have a BAV? What is your valve issue? Hang in there. It's not that bad.

They found it in May of 2021 when i had covid. It showed up on a ct scan they did for my lungs for pneumonia. The ER dr told me to immediately seek out a cardiologist to address it. I had been seeing a dr already for high blood pressure. So i went to a cardiologist a few months later and they did another ct scan in October 2021. The result of the 2nd scan was “no change from 4.2 cm”. I have a 3rd scan coming up in April. Im worried because it was only at my last visit did the cardiologist say “no lifting”. Im a car guy so always doing lifting! ive lifted car doors, transmissions, heavy car ramps, pushed cars in my driveway etc, all between October thru last monday. i had no idea i wasn’t supposed to be doing these things!

Anyway, im 5’10” overweight at 295 but still very physically active.

As far as the valve, the dr just mentioned it in passing but i remember him saying they would start testing it as we get closer to what he said was 5.5 cm for surgery.

Im super worried because my brother, 17 yrs ago at age 43, died from this!

Again, thanks for the replies guys! First forum i found this responsive! Thank you!

 

[pellicle]

Hi

well I was diagnosed with a 5.6cm aorta dilation (can't be sure if it was 5.3 or 5.6 but one of them) and was told that I needed surgery as soon as possible. Turned out to be a few months.

Watch and wait is killing me!
How do you guys cope with the watch and wait phase?

I am certain that it was my wife who is the most worried.

So, just be aware that 'no lifting' is not "no lifting" its really "no heavy lifting". I would urge you to seek clarification on that because your dilation is not in the panic region based on medical guidelines.

Eg

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC5497177/
As of today, it is recommended to offer prophylactic ascending aorta repair to patients without predisposing conditions other than hypertension when the aorta reaches 5.5 cm or if the growth rate exceeds 0.5 cm per year or if patient is undergoing another major cardiac surgery with an ascending aorta over 4.5 cm


The newest American guidelines recommend prophylactic surgery for patients with Marfan syndrome in 6 settings [46]:

• When the aorta reaches a diameter of 4.5 cm with either a positive family history of complications.
  When the aorta reaches a diameter of 5.0 cm.
• Associated significant aortic valve regurgitation, if the aorta exceeds 4.5 cm.
  When the patient is undergoing aortic valve replacement, if the aorta exceeds 4.5 cm.
• When the annual rate growth exceeds 0.5 cm.

note the last point ... again I recommend you seek clarification because it could well be years before surgery.

How I've always coped is by ignoring the problem that I can't do anything about other than to remember my guidelines. Just like I have to remember different and new safety guidelines when working on site.

Some words of advice that date back thousands of years now

and

So do just what you did before you knew, but be aware that you shouldn't lift and strain ... (which you shouldn't do anyway).

Normal cardio work is fine ... keep up your fitness and focus on whats important in life (and its not the surgery, because that's not something you can control. Another one from Marcus Aurelius:

Best Wishes

 

[deancass2000]

Hi

well I was diagnosed with a 5.6cm aorta dilation (can't be sure if it was 5.3 or 5.6 but one of them) and was told that I needed surgery as soon as possible. Turned out to be a few months.



I am certain that it was my wife who is the most worried.

So, just be aware that 'no lifting' is not "no lifting" its really "no heavy lifting". I would urge you to seek clarification on that because your dilation is not in the panic region based on medical guidelines.

Eg

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC5497177/
As of today, it is recommended to offer prophylactic ascending aorta repair to patients without predisposing conditions other than hypertension when the aorta reaches 5.5 cm or if the growth rate exceeds 0.5 cm per year or if patient is undergoing another major cardiac surgery with an ascending aorta over 4.5 cm


The newest American guidelines recommend prophylactic surgery for patients with Marfan syndrome in 6 settings [46]:

• When the aorta reaches a diameter of 4.5 cm with either a positive family history of complications.
  When the aorta reaches a diameter of 5.0 cm.
• Associated significant aortic valve regurgitation, if the aorta exceeds 4.5 cm.
  When the patient is undergoing aortic valve replacement, if the aorta exceeds 4.5 cm.
• When the annual rate growth exceeds 0.5 cm.

note the last point ... again I recommend you seek clarification because it could well be years before surgery.

How I've always coped is by ignoring the problem that I can't do anything about other than to remember my guidelines. Just like I have to remember different and new safety guidelines when working on site.

Some words of advice that date back thousands of years now
View attachment 888459

and

View attachment 888460

So do just what you did before you knew, but be aware that you shouldn't lift and strain ... (which you shouldn't do anyway).

Normal cardio work is fine ... keep up your fitness and focus on whats important in life (and its not the surgery, because that's not something you can control. Another one from Marcus Aurelius:

View attachment 888461

Best Wishes

thanks for the input, much appreciated. ive been watching videos, studying, researching and reading all the info i can find. I made a drastic change to my diet and went all plant based. Its actually been pretty easy and satisfying so far.
I think the dr might be approaching it a little more cautiously since i had a brother that died from this when he was 43 years old 17 yrs ago.

I wish i could ignore it but man thats a tough one! I guess as time goes on it might get easier but for now its very tough!

Thanks again for the input!

 

[pellicle]

think the dr might be approaching it a little more cautiously since i had a brother that died from this...

I'm betting this was undiagnosed and undetected ... No?

 

[deancass2000]

I'm betting this was undiagnosed and undetected ... No?

exactly, he was in his bathroom and just died in the middle of the floor. Autopsy said his heart had “exploded” (his wifes words at the time) Later, i talked with the dr who did the autopsy and he said it was an aneurysm that had burst.

 

[pellicle]

exactly, he was in his bathroom and just died in the middle of the floor. Autopsy said his heart had “exploded” (his wifes words at the time) Later, i talked with the dr who did the autopsy and he said it was an aneurysm that had burst.

Which means it was not being tracked or known its size at dissection.

Completely different to your situation...

 

[deancass2000]

Which means it was not being tracked or known its size at dissection.

Completely different to your situation...

very true. i actually told my wife i was glad i got covid because had i not they may not have found mine in time without the lung ct scan.

 

[pellicle]

very true. i actually told my wife i was glad i got covid because had i not they may not have found mine in time without the lung ct scan.

lucky break.

I found mine because I was sus about my valve, turned out I was correct that there was a little bit of leakage, but then found the aneurysm during those scans. So if I'd delayed another year and or gone on the ski trip we were planning (hard core stuff) I'd have probably died in the fields in Norway.

 

[carolinemc]

Hello,
Recently diagnosed with 4.2cm dilated ascending aorta. Im a 55 yr old male.
Doc says “watch and wait”, ct scans every 6 mths and NO Lifting!!! Possible valve replacement when doing surgery on the aorta. Watch and wait is killing me!
How do you guys cope with the watch and wait phase? Driving me nuts. After surgery, do patients normally have any restrictions or not?

I was born with my defective aortic valve, it was replaced with a St. Judes' aortic valve in 2001. Never had a CT, only echos and as a child had x-ray. You just keep doing what the doctor wants you to do. After my bypass, was restricted from picking up no more than 5 pounds of weight and no pulling for 8 weeks. Off work for 8 weeks.

 

[Lex Luther]

Hello,
Recently diagnosed with 4.2cm dilated ascending aorta. Im a 55 yr old male.
Doc says “watch and wait”, ct scans every 6 mths and NO Lifting!!! Possible valve replacement when doing surgery on the aorta. Watch and wait is killing me!
How do you guys cope with the watch and wait phase? Driving me nuts. After surgery, do patients normally have any restrictions or not?

I was diagnosed with an ascending aortic aneurysm of 4.7 for my 60th birthday. Since then, I receive an MRI and echo annually until recently. At 68 the size increased slowly over the years and when it enlarged to 4.9, echoes every 6 months were added. Now at 5.0, but cardio states no surgery necessary at this time and will continue to monitor. Like you, when I was first diagnosed and was referred to a heart surgeon I expected it to be repaired quickly, as he performed surgery on my younger sister when hers was 4.7, but she was symptomatic, and I was not (and 3inches taller at 6.1). Had already decided on mechanical valve, because I have afib, and have been self monitoring warfarin for several years. Now at 70, starting to review vale choices again, but because I doubt there is no guarantee of cure of the afib which brougt me to warfarin, mechanical still seems to be at the top of the list, although my guess is that surgeon will lean towards tissue. I no longer seem to have the initial high anxiety I did at 60, finding out about the aneurysm and need for potential replacement of my tricuspid valve. Then I wanted it done immediately. That said, I have been greatful over the years of being able to travel, continue to work, cycle, workout, etc. with life as usual (afib notwithstanding). No doubt, if/when surgery comes, extreme anxiety will be back, wondering if I will ever regain my physical/mental capablities - but not a question for now.

 

[ATHENS1964]

Height alone, rather than body surface area, suffices for risk estimation in ascending aortic aneurysm
https://www.jtcvs.org/article/S0022-5223(17)32769-1/fulltext

 

[deancass2000]

I was diagnosed with an ascending aortic aneurysm of 4.7 for my 60th birthday. Since then, I receive an MRI and echo annually until recently. At 68 the size increased slowly over the years and when it enlarged to 4.9, echoes every 6 months were added. Now at 5.0, but cardio states no surgery necessary at this time and will continue to monitor. Like you, when I was first diagnosed and was referred to a heart surgeon I expected it to be repaired quickly, as he performed surgery on my younger sister when hers was 4.7, but she was symptomatic, and I was not (and 3inches taller at 6.1). Had already decided on mechanical valve, because I have afib, and have been self monitoring warfarin for several years. Now at 70, starting to review vale choices again, but because I doubt there is no guarantee of cure of the afib which brougt me to warfarin, mechanical still seems to be at the top of the list, although my guess is that surgeon will lean towards tissue. I no longer seem to have the initial high anxiety I did at 60, finding out about the aneurysm and need for potential replacement of my tricuspid valve. Then I wanted it done immediately. That said, I have been greatful over the years of being able to travel, continue to work, cycle, workout, etc. with life as usual (afib notwithstanding). No doubt, if/when surgery comes, extreme anxiety will be back, wondering if I will ever regain my physical/mental capablities - but not a question for now.

When you say your sister was symptomatic, what symptoms did she have? I’m curious because on certain days of physical activity i feel a dull deep pain under my left chest area, and it does let me know it’s there.
Wow, 10 years later and no surgery on you? I wonder why they have people wait so long? I would think a younger patient would be better to handle the stress of the surgery.
This is what scares me. I found this comment from someone on a youtube video i watched and i hope this doesnt happen to me! Thank you for your comments and good luck to you.

 

[cldlhd]

Hello,
Recently diagnosed with 4.2cm dilated ascending aorta. Im a 55 yr old male.
Doc says “watch and wait”, ct scans every 6 mths and NO Lifting!!! Possible valve replacement when doing surgery on the aorta. Watch and wait is killing me!
How do you guys cope with the watch and wait phase? Driving me nuts. After surgery, do patients normally have any restrictions or not?

I can definitely come miserate. "Fortunately", sounds weird saying that, when My aneurysm was discovered back in 2014 It was estimated to be 4.7 to 4.8 cm, my cardiologist wanted me to watch and wait and just don't lift anything heavy and all that and put me on blood pressure medication even though I never had high blood pressure etc. Seeing as to how big it was, my surgeon said I was on the cusp and he could warrant surgery if I wanted it. Of course I asked him if I waited, 5 to 10 years at most, did he think they would be any major surgical improvements. That or the obvious fear of a bad surgical outcome but I decided to get it over with. I lived for 11 months with the aneurysm and afterwards I have no restrictions at all. Can speak for anybody else but my surgery was in February 2015 and I barely think about it

 

[Lex Luther]

My sisters symptoms were primarily lack of energy and breathing issues on exertion. She did not have a habit of any regular aerobic exercise which I suspect made a difference. The surgeon at Texas Heart-Houston repaired the aneurysm as well as the valve -no replacement. She recovered quickly from the surgery at age 57 and her valve appears to be posing no problem today. Never knew of the amount of her valve leakage at the time. I have enjoyed aerobic exercise all of my adult life, which I hope has and is making a difference. The surgeon I saw years ago instructed me to keep my weight down, avoid lifting over 20lb, and avoid constipation which I have done (weight limit lifting sometime exceeded by necessity). Unlike my cardio, he did not prohibt me from cycling which I have continued. I have kept stats of my exercise progress and note I have gotten slower through the years - heart condition or just overall aging process? Apple watch has helped my monitoring.

 

[bizinsider]

Hello,
Recently diagnosed with 4.2cm dilated ascending aorta. Im a 55 yr old male.
Doc says “watch and wait”, ct scans every 6 mths and NO Lifting!!! Possible valve replacement when doing surgery on the aorta. Watch and wait is killing me!
How do you guys cope with the watch and wait phase? Driving me nuts. After surgery, do patients normally have any restrictions or not?

Well, you can get multiple opinions. I was on the 2x a year scan plan (alternating echo w/an MRI, no contrast) and then the 4x a year scan plan, as I was getting into the high 4s. Finally, my cardiologist told me to come back in three months and check it again. My valve was continuing to deteriorate but I felt fine, and I had been consulting for the prior two years with Dr. Svensson at Cleveland. Each time he said (via email) we should revisit in a year.

Finally, I said to my cardiologist - I need to get on with my life... and THIS time Svensson said - you should come in. I did and THIS time he said I should have surgery sooner rather than later.

The kicker - while my AA was just under 5, it was the valve's condition - and the risk that it would damage my heart - that forced the surgery. He specifically said that if the valve had been ok he wouldn't have pushed for the surgery at that time (two yrs ago.)

So, the watchful waiting.... I had limits on the amount I could lift - I think it was under 50 lbs. I say just get on with your life but make sure you stay with it and, if you are concerned, get a second opinion... maybe from a top center, which can do it virtually.

Best of luck with it.

Herb

 

[deancass2000]

Well, you can get multiple opinions. I was on the 2x a year scan plan (alternating echo w/an MRI, no contrast) and then the 4x a year scan plan, as I was getting into the high 4s. Finally, my cardiologist told me to come back in three months and check it again. My valve was continuing to deteriorate but I felt fine, and I had been consulting for the prior two years with Dr. Svensson at Cleveland. Each time he said (via email) we should revisit in a year.

Finally, I said to my cardiologist - I need to get on with my life... and THIS time Svensson said - you should come in. I did and THIS time he said I should have surgery sooner rather than later.

The kicker - while my AA was just under 5, it was the valve's condition - and the risk that it would damage my heart - that forced the surgery. He specifically said that if the valve had been ok he wouldn't have pushed for the surgery at that time (two yrs ago.)

So, the watchful waiting.... I had limits on the amount I could lift - I think it was under 50 lbs. I say just get on with your life but make sure you stay with it and, if you are concerned, get a second opinion... maybe from a top center, which can do it virtually.

Best of luck with it.

Herb

And i have done that. I have scheduled an appt for April 5th with a top surgeon at Missouri Baptist in St Louis. The first question the nurse asked me is why hasn’t your current cardiologist requested and echocardiogram? I said, now you know why i’m calling you guys. I just felt like my current cardiologist wasn’t doing enough.

And she said it was very important to mention my brother who died 17 yrs ago from an aorta aneurysm. She stressed that emphatically.

So i guess i’ll see what the surgeon has to say on April 5th