Please help me

[themalteser]

Hi,

I'm from the UK, last October I had a major panic attack and incurred severe chest pain, pressure like feeling. Hospital conducted a variety of tests, including ECG's, blood tests etc and all back normal, except from the echocardiogram.

The echo revield a functionally bicuspid aortic valve, with no stenosis and only a trivial regurgitation, and a 4.5cm aortic root enlargement at the sinus of valsalva, and 4.0cm at the sinotubular junction, there is also some sinus effacement. Ascending aorta is normal at 3.3cm, and rest looks ok.

I've seen 4 cardiologists, 1 in a different country and all of them said that my condition is fairly stable, and unlikely to change for several years-if at all.

Because of my current generalized anxiety disorder, I just can't beleive them, I feel that I'm just gonna collapse, or that my dilation is enormous that it needs an op now!, and then I start getting really scared, my chest starts aching, and get really worried. My cardiologists said that the enlargement, as it is at the sinus of valsalva, and by it's nature it's already bulged, then my enlargement is only slight, and could just stay like that, he told me no precautions is necessarily apart from very heavy weight lifting.

I'm 27 years old, have a love wife and 3 children(twins and a 5 year old) and feel that I'm loosing everything I got! I check my blood pressure 100 times a day, I check my pulse every second. Don't know whom to beleive, whether the cardilogists or the Internet. P.S. Aortic annulus is normal aswell at 25mm.

 

[Ross]

Well welcome to the forum. It sounds like your suffering extreme anxiety more so then heart problems. How big of a person are you? The only thing that concerns me is the size of the aortic root. Have they done a CATscan on you?

 

[Julieaka]

I agree with Ross -the root is the number to watch as 4.5cm is considered a concern by most major heart centers. And, while I am by no means any kind of medical expert I just wanted you to know you are not alone AND in fact if you "google" the topic - there is some connection between valvular issues and anxiety particularly panic attacks. I had SEVERE panic attacks that I now have down to a modest paranoid fear LOL and frankly the beta blockers to help with the valve and aneurysm issues also helped the panic attacks - get a good general doc who understands you to go along with the cardiologist and then work on your "self talk" ! P.s. Started my panic attacks and watching my cardiac issues around 25-27 yrs old and am just now going in for surgery at 43 don't rush into OHS (but my aneurysm has held at 4cm for a long time)

 

[themalteser]

Hi don't know if my previous reply has been posted, but can't see it here. This is exactly what worries me, the aortic root, but all cardiologists including doctors agreed that the enlargement is only mild as it's at the sinus of valsalva. One cardilogists said that the enlargement is 4.5cm the other one said it's 4.2cm, then I seemed opinion from 2 other excellent cardiologists and all said nothing to worry about, just repeat yearly echos.

I am 5'11" and weigh 84kg

 

[Ross]

Doctors never get alarmed until it reaches 5.0 and some even larger. I've heard of them leaving them go as far as 6.5, which in my opinion, is very foolish. Anything larger then 5.0 needs to be dealt with, even if the valve isn't the issue at the time. Your not terribly big, so I would think they'd be in surgery mode at 5.5.

With these things, you can never tell whats going to happen. Some don't do a thing for many years, others bare watching every 6 to 12 months. Have they recommended checking every 12 months?

In any event, don't drive yourself crazy. It's repairable. I'm living proof of that as well as many others here.

 

[Maryka]

Yow! That enlargement sounds large to ME! (I am not a doctor, of course, and my aneurysm was watched carefully at that size.) I hope you are taking some beta blockers to try to slow the growth of that enlargement! Six months is probably an OK amount of time to wait between evaluations. Just take it easy, in all regards, and you might be able to stay at that level for a long time. On the other hand, remember that pain between the shoulder blades is also a sign of aortic dissection.

 

[themalteser]

Hi,

ok I just asked another cardiologist opinion, and here is his reply:

I realise that having an abnormal valve can be distressing, but this is a very common condition.* A bicuspid aortic valve with minimal regurgitation and mild root dilatation are no cause for concern.* I agree with the comments of the cardiologist, that the risk on untoward events is extremely rare.
*
I assume you are under follow-up by the cardiologist – this is all that is required at this stage.
*

Furthermore he states:

A degree of root dilatation is expected with a bicuspid aortic valve. This may not dilate any further, or could do so but usually very slowly – enough time for it to be detected on yearly echo.

I am not in any betablockers, cardiologists don't want me to take any, my bp is usually around 125/80 unless I'm
anxious which goes up to 150.

 

[surfsparky]

Hi,
Welcome to the site.
My hubby is now 37 years old and had the Ross Procedure for his bicuspid aortic valve 7 years ago. He now has an enlarged aortic root (4.5) which they are monitoring annually. It was diagnosed 4.5cm 3 years ago and hasn't changed. The only time we worry is when it is time for his annual check up (wondering what the tests uncover!), but other than that, choose to enjoy our life with our three kidlets. Chris leads an active lifestyle (surfing at the beach while I type!), while taking all the necessary precautions. I think that when you know you have heart issues, you become so much acutely aware of things not feeling right and feeling different. It took chris a long time not to dwell on every heart beat that sounded strange/ or irregular. He is on a beta blocker which I think (just my humble opinion) assists in the slowing the progression of the aortic root enlarging. It's similar to a bulge in a car tyre - you want to keep the pressures stable so that it doesn't not increase the size of the bulge.

Hang in there...and try (I know it's easier said than done) to replace the worry with good things...family time, times with friends, movies, day trips...all of the good things in life that you enjoy.

And this site is great for ranting, sharing anxiousness etc...we're all here to listen!

Cheers,
Yolanda

 

[kfay]

Have you seen all these Dr's in person, or are you asking Dr's on the internet? You can't believe everything you read on the internet and for some people, especially people who are prone to having anxiety issues, it's probably best that you stay away from it. I went through a phase after my surgery where I was basically obsessed with all of this stuff...I went to see a psychologist who specialized in dealing with people with health issues. She had me make deals with her about how much time I would spend daily, and then weekly, on the internet looking stuff up. It took me a couple of months, but eventually, I lost interest and just moved on with my life. Don't be afraid to seek professional help if you haven't already.

By the way, I have a 4.0 "slight" dilation of my sinus of valsalva that my Dr's have barely made mention of. I don't even really know what it means and haven't spent any energy worrying about it.


Kim

 

[skeptic49]

Hi,

ok I just asked another cardiologist opinion, and here is his reply:

I realise that having an abnormal valve can be distressing, but this is a very common condition.* A bicuspid aortic valve with minimal regurgitation and mild root dilatation are no cause for concern.* I agree with the comments of the cardiologist, that the risk on untoward events is extremely rare.
*
I assume you are under follow-up by the cardiologist – this is all that is required at this stage.
*

This seems like it's about right. You have bicuspid aortic valve disease (you have a BAV)..but no stenosis, minimal regurgitation and a degree of root dilation but your ascending aorta is normal. You need to keep an eye on it and try not to get stressed out about it. BAV is often accompanied by a dilated aorta, etc., indicative of a connective tissue disorder. However, you could be stable for years or decades. My BAV didn't begin to gum up until I was in my 50s. Like you I'm not on BP meds (yet) since my cardio doesn't feel I need to be on them at his point. Take a breather and you should be fine!

Best wishes,

Jim

 

[themalteser]

Honestly, thank you, thank you, thank you so much for all your re-assurance! , I know, I just need to get a grip, get my thoughts together and focus on my wife and children, before I loose my mind, I need to stop checking my pulse every minute, and blood pressure every hour!!!!!!!! All product of anxiety......

 

[Ross]

Hey dude, no sense killing yourself with worry. This is one thing you cannot control no matter how hard you try, so take a big breath, relax and enjoy what life offers.

 

[themalteser]

Hi all, just an update for those interested, I had a 24hr ambulatory blood pressure reading, and result was normal, it peaks to around 140/80 but at night it goes right down to 110/70, which cardiologist said it's absolutely great, in view of this, they do not want me to be put on any betablockers. Having asked to confirm measurement again ,The aortic root measurement have been confirmed at 4.2 cm at level of the sinus if valsalva, and 4.0cm at sinotubular junction and 3.3cm ascending aorta, my body frame is 2.04m2. None of the top surgeon and cardiologist I've asked about my condition, including Dr Miller at Stanford, Dr David Tirone (David Procedure) , Dr Pepper UK, Professor Sir Bruce Keogh(top surgeon and medical director) are worried about my condition, all of them highly agree that this takes many many years to progress, usually late middle age or older, and even sometimes, this never progress at all, especially that I'm fairly tall and fairly large body frame, and have no known family history of such condition. I must not lift extreme heavy weights, apart from that, just carry on living normal life!

However, despite all reassurance I'm getting, I still can't settle my mind, so now hospital has referred me to a psychiatrist!!!!! 27 year old and I'm just killing my life, Im even seeing my wife getting tired and bored of my constant worrying from dawn to dusk! Cant plan anything for the future, cos Im too scared, and people who tells me to live day by day, makes me worried even more. I ain't trying to drum up attention, but I really need help and your experiences, example, some of those who discovered BAV some time ago (20 years+) was your root a little bit dilated aswell?

Sorry guys, any help is highly appreciated.

 

[ShezaGirlie]

My heart murmur (BAV) was diagnosed 37 years before my valve was replaced. The doctor told me to go on and live your life and I did while never giving it a second thought - think about that, I had 37 years and never gave it a thought. Trust your doctors and digest what they are telling you - trust your wife, trust your friends and be sure to trust your psychiatrist! I see where you have 3 children - do you realize how lucky you are? We can sit here and give you our experiences and advice until the cows come home, but it won't do any good if you don't learn to trust the good things in life that you have now. You wouldn't want to lose them, would you?

 

[Superbob]

My heart murmur and aortic regurgitation were diagnosed when I was in my 20s by a very alert internist. (No other doctors detected the murmur.) He said I would eventually have to have replacement surgery.

I went on to have a very busy career (battling Beltway traffic in DC in latter part of it), played industrial league softball, coached my kids soccer and baseball teams, and ran marathons and 10Ks.

I was occasionally monitored, with stress tests etc.

Finally, in my early 60s, the docs found that my aortic valve was leaking pretty badly and that my ascending aorta was approaching 5.0 cm. I had a combined valve and root replacement at age 63.

Thus it was nearly 40 years between initial diagnosis and time for corrective surgery.

I am not saying that your surgery is that far off, but if you have a quartet of outstanding docs saying that you are many years off from needing surgery, I would do my best to relax and enjoy life. I hope you can ease your mind and find other things to think about.

(P.S.: I'm not sure echo technology was as advanced in my youth as it is now, but I do remember a number of times over the years docs/cardios advising me I had a somewhat enlarged heart. So in answer to your question, yes, I assume I did have a moderate amount of dilation over the years.)

 

[dick0236]

However, despite all reassurance I'm getting, I still can't settle my mind, so now hospital has referred me to a psychiatrist!!!!! 27 year old and I'm just killing my life, Im even seeing my wife getting tired and bored of my constant worrying from dawn to dusk! Cant plan anything for the future, cos Im too scared, and people who tells me to live day by day, makes me worried even more. I ain't trying to drum up attention, but I really need help and your experiences, example, some of those who discovered BAV some time ago (20 years+) was your root a little bit dilated aswell?

Sorry guys, any help is highly appreciated.

If your current medical professionals are telling you "not too worry".....why worry? If, and when, the time comes, you will have whatever surgery is needed to correct the problem......and then you can join the "zipper club". Although this is serious surgery, it is NOT serious enough to allow it to drastically affect your life....or the lives of the people around you. Take the advice of the hospital and spend some time with a mental health professional. Many people find the anticipation to be far worse than the reality of heart surgery:wink2:.

 

[Rebecca]

Stop worrying, your wife and children need you!! You are lucky to know that you do have a heart with bicuped valve and your doctor will monitor you for the rest of your life. Shaun White had open heart surgery when he was a infant and Arnold Schwarzenegger twice had open heart surgery. I have been in the waiting room for more than fifteen years. Ten years ago I was told it was time and than three years ago I was told it was time. After each time being told it was time I had more test done and I am still in the waiting room. Let your doctor do the worrying for you and he will let you know when it is time for surgery. I do think it is alway good to get a second opinion.

 

[tobagotwo]

Beta blockers are not preferred by doctors in Europe and the United Kingdom because they can cause issues of their own, including autoimmune disorders and diabetes (my wife, among others here, wound up with psoriasis from a beta blocker). UK physicians tend to prefer ACE inhibitors to start with.

At any rate, the function of a beta blocker in this case would be to soften the beat of the heart. However, it's not a definitive measure, and often doesn't seem to affect the outcome either way. Given its lackluster effect for this purpose and attendant risks, I would be happier not to be on one, were it me.

Not everyone with a bicuspid valve has an enlarged aortic root, but it's not uncommon. Please be aware that the vast majority of people with bicuspid aortic valves never need to have anything done for them or their aortic roots. Yours would never have been noticed, except that you had a wide battery of tests done for a scare.

The sensible thing is to have annual echoes and otherwise ignore it. You can spend your time worrying, but the chances are very good that you will be disappointed year after year as your valve and root remain pretty much the same, and nothing needs to be done. What a waste of your life that would be.

It would appear that you've had enough medical opinions for now, as you choose to ignore them. I really would suggest you focus on your life for a while instead. After a year, when you get your next echo, you will be able to put it into perspective.

Be well,

 

[Michelle D]

Don't fight your anxiety with anxiety. Acknowledge your anxiety and then get to a therapist. Your fears may or may not come to pass but your anxiety is real. I was a hypochondriac who would lie awake for hours every night before I ever had any health problems worrying that one day I'd have to have surgery one day or god forbid spend a night in a hospital. Now fresh out of surgery I obsess over every little medication side effect and every complication. Let me tell you that the anxiety has been the most disabling part of all of this. So please go to a therapist if it was recommended to you. Good luck.

 

[Marguerite53]

However, despite all reassurance I'm getting, I still can't settle my mind, so now hospital has referred me to a psychiatrist!!!!! 27 year old and I'm just killing my life,

.

I think a psychiatrist sounds like a very good idea. You need some coping skills. That is what those professionals can help you with. How to cope. They can't take the physical problems away, but they can identify why it is that you are not able to accept them and move through your day to day life. You need some training. But of course, you have to be willing to take direction once you are in their office and under their care. You have to find someone to trust. This whole predicament is a lot about letting go. You cannot be a control freak. It is out of your hands (I mean, you cannot do this surgery, or fix things yourself). This is often the hardest lesson we heart patients must learn. Let someone professional guide you through the learning.

Best wishes.

Marguerite