Conflicting Stories = Anxiety & Panic for a new "possible" BAV-er

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I just ran across something mind-blowing, which could mean that Roxx's anxiety may have a physical not mental cause. Take a look via search engine at something called Dysautonomia. (My apologies for not knowing before that there is such a thing.)
Jeanie

Yes....
I have known of this condition for awhile
MVP, Irritible Bowel syndrome, Epstein Barr, Chronic Fatigue Syndrome, and Fiber Mialiga all fall under this category.

In fact.... mitral valve prolapse is classified at the cleveland clinic as a anxiety issue...not heart.

Fun Stuff
 
I was a "waiter". I waited a long time to get my valve replaced and my 5.5 acending aortic aneursym fixed. I found out I had the aneursym in 2000 and also the bad valve. I had a TON of excuses, my son was getting married, then my son and his wife were expecting, etc etc. Then we moved back to our home state of Ohio and I got my disability. When I would look my my family and then realize how hard it was to keep up with my very active grandson, I decided it was time. I now wish I had done it 10 yrs ago when I was younger. But as they say hindsight is 20/20 and now it is over and I am still here. With your 3.4 root I would make sure to stay in touch with your dr every 6 months for check ups to make sure it is not growing. And as far as the BAV is concerned, that is what I had and when my sx started really getting to me is when I started thinking more and more about surgery. Good luck to you. :)
 
So....

If I got something this defective in my body.... lets fix the damn thing and get it over with. If this is nothing more than an "incidental" finding that people find out about at their autopsies.... then why am i messing with a yearly Echo??

IMHO, it's not that simple; however I will say it's this simple: if it's not broken, don't fix it. Something can be defective and still serve you well.

Luana
 
I think you are experiencing the panic and fear that all of us experienced when first diagnosed and trying to get used to the idea. You are doing the right thing to get all of the information you can.
The bottom line is everyone is different and will progress at different rates, so there are no black and white answers and monitoring is required. When I was first diagnosed 13 years ago, I was so anxious but started to relax as I got more info and realized how COMMON this issue. I was also grateful not to need immediate surgery because I felt that the longer I could wait the better it is because technology is improving. If you jump to have your valve replaced before it's time, you are only replacing one potential issue wiht a definite issue.
When it finally is time, there is comfort in the wonderful technology that is there to fix you up.
 
I found out at age 61 that I had BAV. I'm glad no one diagnosed it any earlier, but it was sure good it was diagnosed when it was and not overlooked. Despite this congenital defect, I led a perfectly active and care-free life right up until the diagnosis. I ran track in high school and was a VERY fast 10K and marathon runner later in life.

Once the diagnosis is made, follow-up exams and echo studies are important, especially if there are any symptoms (shortness of breath with daily activities, any chest pain). I never had any symptoms but echos showed my valve had finally started to stenose down rather rapidly, going from 1.1cm to 0.7cm in 9 months. My aortic root was 3.6 ("borderline") on echo, but a CAT scan showed more diffuse enlargement, and despite my lack of symptoms, surgery was indicated due to the appearance of my aorta and the rapidity with which my valve was closing down and the associated rising pressures were having an effect on my heart.

I certainly experienced a lot of anxiety and loss of sleep after I received the diagnosis. That's understandable. Unless you have information to the contrary I would not change my lifestyle just because you discovered you have had a congenital defect. These valves can operate very well for many decades, as mine did. If the degree of stenosis and regurgitation is minimal and the pressures and left ventricular function are normal, things should go on normally until those change. They may never deteriorate enough to justify repair or replacement. Somewhere between 1 and 2 per cent of the population have BAV and a good share of these never have surgery.

So, if BAV is confirmed, yearly echos are important to monitor the status of the valve and your heart muscle's response to it. If it is essentially stable and you have no symptoms, carry on.

There is no benefit to repairing/replacing this if it is stable and asymptomatic. However, if the valve (or aorta) is unstable, like mine was, getting it repaired early before there are significant changes to the heart muscle is reasonable even without specific symptoms. So, mine ended up getting fixed only a year after diagnosis. Had it been stable, I would have postponed the surgery as long as my active lifestyle was unaffected and I felt perfectly healthy. Exactly when to get the surgery is a judgment call. Traditionally surgeons waited for SOME symptoms, but more and more surgery is being done earlier before the heart muscle has accumulated significant damage. Also, my surgeon was more aggressive than many in pursuing the aortopathy of BAV. The "traditional" approach uses an arbitrary dimension of 5 cm where the risk of aneurysm becomes much higher, but this is a continuum, and my surgeon felt the risk of surgery is less than the risk of "wait and watch" with smaller but abnormal aortas.

If you are young and the condition is stable, take advantage of the early warning you received to become more familiar with the condition and research various approaches that might be taken, but be sure not to let it affect your enjoyment of life in the interim. I'm glad I didn't. 61 years of ignorance worked in my favor, but that last year scrambling to deal with rapidly progressive BAV was not a lot of fun.
 
Since I originally posted this thread, I think I have calmed down some about the situation.

All of our cases are different.

I am one of the few that volunteered for the Echo & Holter originally..... it was not ordered by a doctor.

At this point... I have no murmur, no stenosis, and no regurge.....it's not even clear if I have a Bicuspid or a dodgy Tri.... either way, at the moment it appears to be working fine.

My Aortic Root is shown currently at 3.4, I am 5"11, 190lbs..... this doesn't seem to concern my doc in the least.....so perhaps I should stop fretting so much as well?

Sometimes I feel dizzy & faint....but my doc tells me this can't be heart related given my numbers. I have panic and anxiety disorder (although very much under control) so perhaps these feelings stem more from that then anything.

Sometimes I have a funny feeling in my chest for days.....usually when I am thinking about all this...... but then I will go 2 weeks and feel nothing.

Sometimes when I am on the phone & pacing the floor i feel out of breath..... but I talk fast anyway, and probably breathe all wrong. When I workout (almost daily) I hardly ever feel winded.

If and when my time comes, I'll just do the best I can..... as of right now, I don't think there is any surgery that would make me any better than I am right now....and from what i understand, as long as a BAV is working properly....its not a problem.
 
Yes....
I have known of this condition for awhile
MVP, Irritible Bowel syndrome, Epstein Barr, Chronic Fatigue Syndrome, and Fiber Mialiga all fall under this category.

In fact.... mitral valve prolapse is classified at the cleveland clinic as a anxiety issue...not heart.

Fun Stuff
Whether it's true or not, I have read before [here] that it is not uncommon for anxiety issues to go hand in hand with mitral valve prolapse.

Another one of those issues where you scratch your head and wonder whether the chicken or the egg came first. And maybe "cluck" for good measure ;) .
 
Since I originally posted this thread, I think I have calmed down some about the situation.

All of our cases are different.

I am one of the few that volunteered for the Echo & Holter originally..... it was not ordered by a doctor.

At this point... I have no murmur, no stenosis, and no regurge.....it's not even clear if I have a Bicuspid or a dodgy Tri.... either way, at the moment it appears to be working fine.

My Aortic Root is shown currently at 3.4, I am 5"11, 190lbs..... this doesn't seem to concern my doc in the least.....so perhaps I should stop fretting so much as well?

Sometimes I feel dizzy & faint....but my doc tells me this can't be heart related given my numbers. I have panic and anxiety disorder (although very much under control) so perhaps these feelings stem more from that then anything.

Sometimes I have a funny feeling in my chest for days.....usually when I am thinking about all this...... but then I will go 2 weeks and feel nothing.

Sometimes when I am on the phone & pacing the floor i feel out of breath..... but I talk fast anyway, and probably breathe all wrong. When I workout (almost daily) I hardly ever feel winded.

If and when my time comes, I'll just do the best I can..... as of right now, I don't think there is any surgery that would make me any better than I am right now....and from what i understand, as long as a BAV is working properly....its not a problem.

I think you've pretty much nailed it down. Maybe some day you'll need something done, but for now, your on the "your fine" side of life and that's a very good place to be!

Anxiety is evil. I have it too, to a degree and yes, it can make a difference. I have just about everything wrong with me as far as heart and lungs go. If my oxygen saturation falls a bit low, I panic and it makes everything 2 times worse. Heart rate increases, saturation drops further, ........well you get the picture. Another reason I avoid going to events. It's very embarrassing to have one of these attacks in front of someone. Doctors naturally bring on an anxiety attack for me. Just going to their office is enough to set me off. Try explaining what's going on with you when that happens. They aren't sure whether they should admit you to the hospital or wait for you to calm down and then see what your like. I hate it.
 
I think you've pretty much nailed it down. Maybe some day you'll need something done, but for now, your on the "your fine" side of life and that's a very good place to be!

Another person with AS seconding that - Mine is maybe BAV to and while it'd be nice to know, they don't and probably won't until it's time to go in and fix the problem. It is what it is. Most important thing is to find a good cardiologist and then follow their advice. In the meantime live your life. I've known of my AS for over 10 years now and it is just now - at age 56 that it is moving from moderate towards severe - so I go a little more frequently now for echos. He told me I can start worrying when he does and he wasn't worried yet.

I dinstinctly remember being in your shoes though the first time I was diagnosed (gyno heard murmur) and after following -up with cardiologist and being told that one day I would have to have that valve replaced. It did freak me out in a big way. The shock wears off and you go back to living life as normal. Just find a good cardio and follow his advice. You will eventually get used to the idea and actually rarely think about it until its time to go get it checked again. Usually less frequently at your age - every 2 to 5 years and then eventually annually and now I'm down to every 6 months - but it took me over 10 years to get here. While I'd love to have it over with too - there are a multitude of reasons for waiting (besides the surgeon's won't touch it till it is time) There could be advances in the medical science, - in fact at your stage if you ever have to have anything done - you may have the luxury of avoiding OHS completely and getting a new valve placed via transcatheter. Now that will be a major advancement that is already giving good results in patients too frail to survive open heart surgery. It is looking very promising.
 
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