New, scared contributor with BAV, 3.6 aortic root and arrhythmias

[Guest]

Hi! I have BAV but hadn’t seen a cardiologist in almost 10 years(I’m 27) I recently returned for testing and was told my regurgitation is mild to moderate and my aortic root is 3.6. Having a really hard time with this and looking to find some re-assurance. Been having panic attacks and it’s starting to affect me at work despit having all of these things since I was a young kid.


Again, I have BAV(mild to moderate), 3.6 aortic stem, arrhythmias(we think it’s superventricular Tachycardia), and high blood pressure(120s/130s)

I am getting a CT scan later this month for further details, and the cardiologist told me after echo, monitor and stress test that this isn’t anything to cause panic or put me in immediate danger and surgery isn’t likely needed till much further down the road(50s or 60s)...


I was hoping someone could help me understand a little about the stage of these things and risks/statistics associated with both valve replacement and root procedures. Any helpful stats or info to help with my anxiety would be greatly appreciated.

1. Is a 3.6 aortic root considered an aneurism? I found online that it isn’t officially an aneurism until 5.0. Also, is there a risk for rupture or dissection at this stage?
2. Is is still likely I won’t need surgery until 50s/60s? I know nothing is certain but my doctor said this is still the case.
3. Are the aortic root and valve surgeries done with a high success rate? Are there any encouraging statistics or forums you could refer me to?
4. This is something that needs long term monitoring, but I’m not in any immediate danger correct? I don’t need to quit my job or anything right?
5. The CT scan, ekg, echo, stress test and heart monitor would show if I was in danger of cardiac arrest, heart attack, heart failure, etc..correct? It rules these out as an immediate concern right? (Sure hope so)
6. There is a chance my aortic anuerism never grows past 3.6 right? Or at least it only moves very very slowly?
7. What will the CT scan be able to rule out, or what should I be looking for asking about with my cardiologist?
8. How long does it typically take regurgitation to advance from mild/moderate to something needing intervention?
9. I keep having shortness of breath—but it’s gotta be from my anxiety and not my BAV right? Before I went back to the cardiologist I was running 3 miles a day and totally fine. Also, if it had progressed to the point of shortness of breath, it would have showed in the testing? Using this logic to move past the psychological barrier so please let me know if it makes sense!

Blah! I’m a mess!!! Any help would be SO APPRECIATED.



Thank you!
Josh

 

[dornole]

Well, I've been at mod-severe regurgitation (like a level 4, you are at level 2 of 5) for 15 years now and they are totally disinterested in me. They do an echo yearly and tell me to get lost.

It doesn't sound like you have high blood pressure? (140/90)

Yes you can totally have shortness of breath from anxiety, even with all my experience I freaked myself out this summer and had an expensive stress echo done and was proclaimed fine. Yes it would show on tests.

Others I'm sure will chime in re BAV and aneurysm. It does seem that many people go about life for decades with this without any impact whatsoever on their lifestyle other than yearly appointments. And by the time your 50 or 60 you will have way more life experience to deal with it, even you even need to.

My doc says do whatever I want for exercise. Some have restrictions. Ask if you're not clear. They will tell you.

Hang in there buddy. Don't be afraid to talk to a therapist if the worry gets to you. It's natural. Or talk to older people who are not your relatives. Young people just get agitated. Older ones will help you take it in stride.

 

[Superman]

I think not going in for so long has magnified your news / concerns.

3.6 is not an "aneurysm" to my understanding. What you might want to do is consult with your medical records from 10 years ago and see what your root measured at that time. It's possible there has been no change. Even if you were under 3 cm's - in 10 years and going from a teenager to an adult, growth can account for some of that. If your doctor is telling you 25 - 30 years out, I'd feel pretty good about that.

Even if they weren't, and they said time to meet with a surgeon, you will likely be in very good hands. I wouldn't go so far as to call this "routine" - but it is a frequently done operation with a high success rate.

I had my valve replaced at 17 years old and an aneurysm repair at 36 (which included a shiny new valve). Both open heart. Both successful. I can run 5 miles at a stretch today. I have five great kids. I've been married for years to an amazing woman. Life is just goes on, and unless I tell people, they wouldn't know I've had two heart surgeries. I'm in better shape right now than most of them anyway, and better than I've been in years. I'm currently 45.

 

[tom in MO]

I don't know anyting about aneurysms, but a few things about BAV but will give a stab at a few of your concerns:

I have BAV(mild to moderate), 3.6 aortic stem, arrhythmias(we think it’s superventricular Tachycardia), and high blood pressure(120s/130s).

120/130 is not high blood pressure. Don't worry about it. BAV (mild to moderate) is not something to worry about either. In a study of untreated BAV where the people passed away, the average age of death was about 50. You should have many more years before you will need treatment for the BAV.

Are the aortic root and valve surgeries done with a high success rate?

Yes. Once detected and monitored, there is a high success rate. For valve replacement <1% fatality and those are in people with other complications. This forum has many success cases.

This is something that needs long term monitoring, but I’m not in any immediate danger correct? I don’t need to quit my job or anything right?

No need to push the panic button. I lived with mine from birth to age 55. You do need to keep a job that has decent health insurance and follow through with your cardiologist.

The CT scan, ekg, echo, stress test and heart monitor would show if I was in danger of cardiac arrest, heart attack, heart failure, etc..correct? It rules these out as an immediate concern right? (Sure hope so)

You're OK. You would be in surgery if there was an immediate concern.

I keep having shortness of breath—but it’s gotta be from my anxiety and not my BAV right? Before I went back to the cardiologist I was running 3 miles a day and totally fine. Also, if it had progressed to the point of shortness of breath, it would have showed in the testing? Using this logic to move past the psychological barrier so please let me know if it makes sense!

Many people get the symptoms of their diagnosis. If your cardiologist did all those tests and you were fine before, I'd say it's the anxiety. I always have high blood pressure in the Drs office. Now I practice relaxation therapy in the waiting room and have dropped by BP by at least 10 points, but it's still higher than at home

 

[Paleowoman]

Hi Josh - you certainly sound like you're in a panic. My BAV was discovered when I was 25 but I never had surgery until I was 60. 3.6 isn't anyeurism - mine is 3.5 and on CT it certainly looks 'big', twice as big as my descending aorta, but it's nothing to worry about. Your blood pressure isn't high - and remember you're anxious which will definitley raise it. No danger of heart attack ! BAV doesn't lead to heart attack, atherosclerotic plaque leads to heart attack and no one has suggested that to you have that have they - that would be highly unusual in a person of your age.

Try to live your life as heathily as possible. Eat healthily and keep fit. Arnold Swarzenegger (spelling?) had BAV and carired on wieght lifting till he had his valve replaced - then carried on after !

Get your checks from your cardiologist as often as he/she advises and then just get on with your life !

 

[DachsieMom]

Hi! I was 42 at the time of my surgery almost three years ago. First, try to relax. Sounds like you are being monitored. I had ascending aortic aneurysm and aortic root aneurysm. I still run now and do everything I want - and have two young children. It is possible that it may continue to grow, but you are being monitored and the6 tend to grow slowly until reaching a certain point. People with BAV should have surgery earlier than others but I agree with others - it is routine for the surgeons. I would try to get to the bottom of shortness of breath if you have it. It could certainly be related to fear and not the aneurysm. I had a little of that - but symptoms always trump size. I am not saying that to scare you at all - just repeating what I was told. In any event- doesn’t sound like an emergency requiring you to make life changes such as your job. Plus, technology always improves with time. Just rest assured that if you do need surgery, you look back on it as a blip.

 

[gatorbait]

Hi Josh,

I recently went through a lot of what you're going through now, so maybe I can help out:

I'm only a year younger than you and was diagnosed incidentally with BAV a few months ago. My only difference in diagnosis is no signs of aortic root dilation. At first, I was extremely panicked, but I've come to realize that I'm in no immediate danger.

I've seen 2 cardios now with neither seeming particularly concerned. The first suggested not going crazy with weightlifting (didn't really give much useful info about what that meant) while the second said no restrictions whatsoever. The first said something might need to be done 5, 10, 15 years down the line and the second estimated 10 to 25 years. My best friend's dad is an excellent doctor and told me i won't have to worry about it until I'm older than him. My best friend also has his MD and going through residency at a top 10 program and agrees with his dad's assessment. Nobody knows for sure but you likely have many years before intervention is necessary.

I don't want to provide false information, but I don't think dissection is much of a concern without an aneurysm. As others have said, I don't think your measurement of 3.6 is considered an aneurysm. I think 4.0 is the starting mark. If I'm wrong about that, I'd appreciate if somebody could correct me.

Something I've learned is that anxiety can cause many alarming symptoms that can make you think something much more serious is going on. If you have an anxiety attack, focus on your breathing and take some nice slow deep breaths. Try to remind yourself that you're okay and it's just a thought.

By the time you and I need intervention, the technology and methods of today will likely be obsolete. Hopefully there will be less invasive procedures by then with more robust valve replacements.

I hope this helps somewhat. Take the time to sift through the forums here, search Google for studies, and learn about others who have gone through this. It might encourage you to know that Arnold Schwarzenegger, Aaron Boone (Yankees manager and former player), and John Fox (NFL head coach and former player) have all had valve replacements and have gone on to live successful lives.

 

[Jmprosser.lab]

Hi Josh - you certainly sound like you're in a panic. My BAV was discovered when I was 25 but I never had surgery until I was 60. 3.6 isn't anyeurism - mine is 3.5 and on CT it certainly looks 'big', twice as big as my descending aorta, but it's nothing to worry about. Your blood pressure isn't high - and remember you're anxious which will definitley raise it. No danger of heart attack ! BAV doesn't lead to heart attack, atherosclerotic plaque leads to heart attack and no one has suggested that to you have that have they - that would be highly unusual in a person of your age.

Try to live your life as heathily as possible. Eat healthily and keep fit. Arnold Swarzenegger (spelling?) had BAV and carired on wieght lifting till he had his valve replaced - then carried on after !

Get your checks from your cardiologist as often as he/she advises and then just get on with your life !

Thank you SO much. You have no clue how much this means to me. I really appreciate it and look forward to further conversation in the future. Best,
Josh.

 

[Jmprosser.lab]

Hang in there buddy. Don't be afraid to talk to a therapist if the worry gets to you. It's natural. Or talk to older people who are not your relatives. Young people just get agitated. Older ones will help you take it in stride.

I really appreciate the feedback. I'm much more encouraged that i'm at stage 2 of 5. Wasn't aware of that. My Dr. doesn't do great at instilling confidence. Hope to talk again soon.

 

[Jmprosser.lab]

I had my valve replaced at 17 years old and an aneurysm repair at 36 (which included a shiny new valve). Both open heart. Both successful. I can run 5 miles at a stretch today. I have five great kids. I've been married for years to an amazing woman. Life is just goes on, and unless I tell people, they wouldn't know I've had two heart surgeries. I'm in better shape right now than most of them anyway, and better than I've been in years. I'm currently 45.

this was extremely encouraging. I can't possibly thank you enough for sharing your info with me. All of this feedback is helping me get past this psychological stuff. Hope to talk more in the future!

 

[Jmprosser.lab]

I don't know anyting about aneurysms, but a few things about BAV but will give a stab at a few of your concerns:

I have BAV(mild to moderate), 3.6 aortic stem, arrhythmias(we think it’s superventricular Tachycardia), and high blood pressure(120s/130s).

120/130 is not high blood pressure. Don't worry about it. BAV (mild to moderate) is not something to worry about either. In a study of untreated BAV where the people passed away, the average age of death was about 50. You should have many more years before you will need treatment for the BAV.

Are the aortic root and valve surgeries done with a high success rate?

WOW!! This was seariously SOOO helpful. Made me feel so much better. I really appreciate you taking the time to share some of your story with me!!

 

[Jmprosser.lab]

HI am not saying that to scare you at all - just repeating what I was told. In any event- doesn’t sound like an emergency requiring you to make life changes such as your job. Plus, technology always improves with time. Just rest assured that if you do need surgery, you look back on it as a blip.

Thanks for your post!! i am trying to get to the root and treat my anxiety/panic attacks so I can be clear about any symptoms. Up until I went to the doctor i was hiking every day and running 2/4 miles multiple times a week. So i'm pretty sure nothing just randomly progressed. Hope to talk again in the future

 

[Jmprosser.lab]

Does anybody have any advice in terms of arrythmias? Or is there another part of this site/forum related to such things. I've had them since I was a kid and only recently started to worry about them. They occur mostly at night and sound almost identical to superventricular tachycardia. Since ive never had an "episode" while going through testing, it hasnt been officially classified. My dr said it's not AFIB, cause she would see signs on my 24hr monitor. She seems un'interested in classifying it and doesn't seem to worry unless it gets worse. Does this sound logical?

Also, Will the CT scan I'm getting at the end of the month be able to show a more clear picture of my aortic root dialated? Will it also show if my regurgitation is the same as it was about 8 months ago? Just want to be clear what it will show me and what I should be asking about.

THANKS SO MUCH!!

 

[jjay32]

Hi Josh, a heart murmur was detected in me when I was in high school. Found out in 2008 that it was due to a BAV and mild aortic stenosis. Had a CT scan done and it showed mildly dilated aortic root and dilated ascending aorta (around 4.6). Fast forward 10 years and the aneurysm is around 4.7 but the valve is in the severe range. So the aneurysm was very slow growing. I am scheduled for surgery in February due to the valve and not the aneurysm (although they will fix that while they are in the neighborhood. Just like you i stressed about the aneurysm until I figured out that it was a large waste of my energy. I was following my doctors orders, and I was being monitored. Knowledge is power, you now are aware of the potential problem and are being monitored, because of this you are in control. (no sudden surprises!) Just like me, I figure that you will be in the waiting room for years to come (bring a good book)

 

[Superman]

Does anybody have any advice in terms of arrythmias? Or is there another part of this site/forum related to such things. I've had them since I was a kid and only recently started to worry about them. They occur mostly at night and sound almost identical to superventricular tachycardia. Since ive never had an "episode" while going through testing, it hasnt been officially classified. My dr said it's not AFIB, cause she would see signs on my 24hr monitor. She seems un'interested in classifying it and doesn't seem to worry unless it gets worse. Does this sound logical?

Also, Will the CT scan I'm getting at the end of the month be able to show a more clear picture of my aortic root dialated? Will it also show if my regurgitation is the same as it was about 8 months ago? Just want to be clear what it will show me and what I should be asking about.

THANKS SO MUCH!!

I used to call it butterflies or flip-flops when I was a kid. Palpitations I assume you're talking about, but you're probably more technically accurate. I've had them my whole life. I've done three 24 hour monitors. None yielded much in the way of need for follow up/intervention. I have had two times where my heart did not find its own rhythm again. I had to go in to the ER and get cardio-verted (zapped, shocked) to get back in rhythm. Worst case scenario, some day I need a pacemaker. Plenty of members here have them. I don't really think about it too much day-to-day. More worried about getting kids where they need to be, work, and taking care of the house. Normal stuff.

 

[pellicle]

Also, Will the CT scan I'm getting at the end of the month be able to show a more clear picture of my aortic root dialated?

​​​​​​

Yes, its a much more accurate measure of this.

As others have said, take it slow and gather the information. My dilation was 5.6cm before surgery. They were anxious about that

 

[Dan Williams 88]

I was looking for the answer to this! I didn't understand I had aortopathy-- and was progressing towards dilatation--until I had a MRI showing 4.4 in 2018. Yet I was being watched for a decade. I did 6 years between MRAs because of echo's sucking and under-counting my measurements After suddenly 'jumping' to 4.4 I did one MRA every 6 months, alternating with an Echo and the Echo had a median of .4cm below MRA. It's comparable because the MRA was the same three times in a row over 2 years with equal spans between MRA and Echo. Take a look at this spread (I changed docs so some tests are missing pre-2012 and for an inexplicable reason, in 2014. On the 4.1 Echo from last year my cardio remarked: "they got good images of this one." The year before, nested between two 4.4 on a consistent MRA is 3.7--which is quite the spread:


Year Diagnostic Sinus of Valsalva
2020 MRI 4.4 cm
2019 Echo 4.1 cm
2019 MRI 4.4 cm
2018 Echo 3.7 cm
2018 MRI 4.4 cm
2017 Echo 4.0 cm
2016 Echo 3.7 cm
2015 Echo 3.8 cm
2012 MRI 3.8 cm




I had been followed for a decade and despite some decent research in the beginning ON THE VALVE and understanding that (the VALVE has remained exactly the same, things were going great I thought) I had no clue that the aortic dilatation was separate or growing. No one bothered to go into detail until I jumped 4cm. At that point, it crossed a clinical line, hence the mention, but it would have been nice to know that they presumed it was going there (or there was a likely chance. So for anyone in my shoes 10 years ago, or BAV, think about the ascending aorta.

 

[Warrick]

I like to reference this site, its written by a surgeon and is an easy read for the layman-

https://badaorta.com/double-trouble-bicuspid-aortic-valve-bav/

 

[Dan Williams 88]

I saw that! It's well explained there and wish I had read that back when I was first diagnosed in my early 20s. I had done some considerable research when first diagnosed a decade ago and I have no idea how I didn't come across aortopathy--until I crossed 4.0 and it was made clear to me. Maybe I didn't understand it initially? * Sighs * Live and learn. I am for taking the emotional IQ from nurses and implanting them into Docs.