Total Newbie to Bicuspid would like some advice.....

[Roxx_yer_Soxx]

First off.... I am so happy to find this website, and tell all of you how much I appreciate your stories and candidness when talking about this.

I will try to keep this as short as I can, and thanks in advance for any feedback.

I am a 31 year old, male, father of 2, very active (workout 4 days a week since 1996). 5 foot 11, 183lbs, less than 8% bodyfat.

I have always had a bit of health anxiety, and over the summer of 2009 (when our son was born) my health anxiety got the best of me. A panic attack in early June landed me in ER.

They sent me home with a Ativan & Zoloft prescription, and that was that...supposedly...

Over the next few weeks I volunteered for every test under the sun.
This included Brain Cat scans, extensive blood work...etc..

Like most anxiety people.... I ended up going down the road of "heart problems"..... now mind you: I had never had any chest pains, or signs their was a heart issue, but as a hypochondriac.... it seemed like the right thing to do. (Mistake)

So here's what happened:
A wore a Holter..... the Holter came back squeaky clean, except for a 13 beat run of non-sustained v-tach

Had to now see a Cardio... he said to lose the Zoloft.... but wasnt concerned

Holter #2 - Pefect

Holter #3- Anxiety levels rose again... this holter showed a lot of PAC's and PVC's

Had an Echo done...... the results:

Right Ventricle - Diastole 2.0
Inter ventricular septum 1.2
Left Ventricle end diastole 4.9
Left Ventricle posterior wall 0.7
Left Ventricle - End slope 1.2mm/sec
MV excursion 2.2
Aortic Root Diameter 3.4
Aortic Root Valve cusp sep 2.5
Left Atrial Dimension 2.5
Fractional shortening 37%
Aortic Valve Max Velocity 1.34 m/sec
Aortic Valve LVOT Velocity .78 m/sec
Mitral Valve E Velocity ,89m/sec
Mitral Valve A Velocity .66m/sec
Tricuspid Valve E Velocity .76m/sec
Tricuspid Valve A Velocity .41 m/sec
Pulmonic Valve .67m/sec

Findings: The left ventricle was normal in size and systolic function with a calculated overall ejection fraction of 66%. Left ventricle wall thickness and wall appeared grossly normal. The right ventricle appeared grossly normal in size and function as well. Both left and right atriums were normal in size. The mitral valve appeared grossly normal. Some views were suggestive of mild systolic prolapse of the anterior mitral valve leaflet. The aortic valve appeared congenially abnormal. It was difficult to distinguish between a congenially bicuspid aortic valve, or a deformed trileaflet with large right and left cornary cusps, and a very small noncoronary cusp. The aortic valve did not demonstrate eccentric closure by M-mode study. The tricuspid and pulmonic valves were not were visualized, but appeared grossly normal. There was no evidence of pericardial effusion. The vena cava and aortic arch were not well-visualized.

Color Flow Doppler- Color Flow Dopper demonstrated trace pulmonic insufficiency. Flow velocity across the aortic valve was normal. There was no evidence of aortic insufficiency. The mitral valve spectral Dopplar study was normal. There was no evidence of pulmonary hypertension.

My cardiologist says I have nothing to worry about, and that I may just want to have a Echo done every year or 2.... other than that, he says I need to get with a caring psychologist and get my anxiety under control.

My cardio says I am 31, I have no click, no murmur, no stenosis, no regurgitation, and no aortic insufficientcy. He said that whether I have a true bicuspid, or a abnormal shaped trileaflet, there is nothing here that concerns him, and in his words "I would almost bet money that your heart system will last you another 31 years before any intervention is needed.... if ever. Just to be on the conservative side, I want you to have a Echo done every 12-24 months."

I said "what if I want surgery now?" He chuckled and said...."there is not a surgeon in the country that would touch you.... try to worry, and just go live your life."

Does this sound right to you guys?

Several things worry me..... especially Enlarged Aortic Root (mine is 3.4).....

In your guesstimation, would you say I have a bicuspid, or a deformed tri?

Do you think there is a good chance I will need surgery in the future?

The cardio (neither one, I saw 2) gave me any restrictions..... in your opinion, am I pressing my luck lifting weights? (I am not a power lifter, just moderate weight).

Thanks so much everyone!!
Scott

 

[rckrzy1]

well my bicuspid worked ok till I hit 40 . So you should or could have a ways to go but be prepared.

 

[Duffey]

Hi, Scott.

I wouldn't consider a 3.4 root to be enlarged.
It's certainly within the realm of possibility that you will need valve replacement as you age, but your results indicate it is likely to be far in the future.

I was 49 before my BAV presented with a murmur, and then another four years before I underwent surgery for aortic stenosis.

I think the plan to have periodic echo's to check any progression is a good one.

 

[Lynlw]

We of course don't know everything your doctors do, but from what you've said their advice seems about right to me. Honestly if they were looking at your valve and couldn't tell what it was, I wouldn't even try to guess, however that is not that uncommon, many time people don't know if they have BAV or not until the surgeon in in there. A root of 3.4 would be something I would just keep an eye on and TRY not to worry about, especially since you will be having echos every year or 2. Try to remember about 2% of the population have bicuspid valves and the majority (2/3s ?) go their entire lives with out a problem and many don't even know they have them.

 

[Roxx_yer_Soxx]

Try to remember about 2% of the population have bicuspid valves and the majority (2/3s ?) go their entire lives with out a problem and many don't even know they have them.

This is exactly what one of the cardios tell me..... He said that it's very well possible that I would have been better off not have volunteering for these heart tests, as I had no problems.... and it's very well possible that I have a tri-leaflet with different size leaflets.

Now, I can't stopping thinking about it.... dream about surgeries..... constantly aware of my breathing and heartbeat.... now I always think I am dizzy & short of breath.

Both cardio's tell me that whatever "heart condition" I may (or may not have).... none of the symptoms I am describing can be heart related based on their findings.

I wish I had their confidence.

 

[Ross]

Sorry to say, but it sounds like pure anxiety to me. By the numbers, your no where near needing surgery, though that could change down the road a ways. No telling how long, maybe even never.

 

[ALCapshaw2]

Whether you have a congenital BAV or a Tricuspid Aortic Valve with 2 leaflets fused together (or malformed) makes NO difference. The fact that your heart and valves are Functioning NORMALLY tells me that NO Surgeon would operate on you just because you 'might have' a BAV or malformed tricuspid valve.

Waiting and Watching (through regular Echocardiograms) is Exactly the Right thing to do at this point. IF and When your Aortic Valve begins to show signs of deterioration, it WILL show up on the EchoCardiograms and your Cardiologist can then decide if you should consult with a surgeon. At this point, I see NOTHING to be concerned about other than your obcessive fear which is probably best managed by someone in the Social Sciences side of medicine.

Given your anxiety issues, I agree with the Cardio that suggested you would probably have been better off NOT knowing that you "might have" a BAV or malformed tricuspid valve. At this stage, it would be best if you could find a way to "put that genie back in the bottle".

While I do not have BAV, I became interested / intrigued with this issue after reading a few compelling stories here on VR.com some time ago. I read most of the BAV posts and suspect / believe that I have a fairly good non-professional 'feel' for the subject. The advice your Cardiologists have given you is consistent with the advice given to others who present with NO measurable abnormalities.

Bottom Line: Wait and Watch and Get On with your Life

'AL Capshaw'

 

[Danny]

I wish my aortic root would have been 3.4, then i wouldnt have needed surgery. Like everyone else is saying, go on and live your life. I do understand the anxiety, but it will get the best of you if you let it. Go workout again, and dont sweat this.

 

[river-wear]

I would kill for echo results like yours. (Just kidding, but really, your heart is damn near normal!) Even with "moderate to severe aortic regurgitation" I only had echo's every two years for a couple of decades before they shortened the interval.

I'd follow up with the psych side with some talk therapy and try not to rely on the drugs for more than a short term aid.

It's good that you aren't "power lifting" heavy weights though. I guess there are theories that indicate it could contribute to any predisposition to an aneurysm. Keep exercising - it's great for your heart.

Michele

 

[Roxx_yer_Soxx]

Sorry to say, but it sounds like pure anxiety to me. By the numbers, your no where near needing surgery, though that could change down the road a ways. No telling how long, maybe even never.

Ross,
You may be 100% right.
It's hard for me to picture this is all
in my head.... but it's possible.

It appears that everyone's body is a little different.
What's abnormal for one person, may be perfectly normal
for another.....ie: I have 2 doctors who were both born
with just one kidney.

Here is what I wish: If only 30-35% of those with BAV ever need any
intervention.... hows come it seems like everyone who has it, eventually
gets intervention?

 

[Johan]

Scott, I was diagnosed with a heart murmer when I was 6 years old. The stenosed aortic valve was only replaced 60 years later. My forester father ensured that the murmer story never interferred with my life. I was like you a serious body builder in my 30's.

When echo machines became available in my forties I had regular updates on the progression of the stenosis. Up to my first catherization 5 years ago (to place a stent after a mild heart attack) we were never sure whether I had a BAV or a dodgy tricuspid valve, it turned out to be the latter (this was finally confirmed during surgery), but made no difference to the way my whole AV situation played out.

Looking at my own echo readings over the years and comparing it with yours, it would seem to me that you are perfectly normal at this stage and that you have many years to go before surgery becomes necessary, if ever.

I emphasise with your anxieties...listening to your heartbeat... worrying about breathing...strange chest pains, I had them all for a month or two after my heart attack, but then I managed to take back control of my life. If you cannot do it on your own please see a professional in that field.

As others have said, the thing to do is to follow your cardiologist's advice and do those echocardiograms at the intervals he suggested and try to forget about it during the intervals.

 

[Roxx_yer_Soxx]

By the way: You guys don't know how much I appreciate your comments everyone. It makes me feel a whole lot better.

My main Cardio guy said "I am 61, and I will be long dead before you ever need a valve replaced."

I guess what I am saying is this: everyone tells me that 60-65% of BAV's & Abnormal Tri's never need intervention. My main Cardio guy tells me that in most people who need intervention, 95% of those show at least mild to moderate symptoms by age 30 in at least 1 or 2 of the catagories that need surveillence. I don't even have a trace of regurg, stenosis, murmur, click, or insufficiency at age 31.5..... which leads him to speculate that even if I do have a BAV vs. a Tri with various shaped leaflets.... I may have a good chance of falling into the 60% that never need intervention.

I do have bad anxiety.... that's true.
But it centers around having a wonderful wife, a 4 year old daughter, and
a 5 month old son. I want to be the best dad/husband I can be.

While surgery of course scares me...I would do it in a second for my family.

But again.... my Cardio says I don't have enough of a condition to give
medication to, or give restrictions.... much less have surgery.

I hope as time goes on, this burden lifts off my mind so I can get back to
to enjoying time with friends & family.

Thank you all for your expert opinions and experiences....it means so much to me.

 

[Lynlw]

Ross,
You may be 100% right.
It's hard for me to picture this is all
in my head.... but it's possible.

It appears that everyone's body is a little different.
What's abnormal for one person, may be perfectly normal
for another.....ie: I have 2 doctors who were both born
with just one kidney.

Here is what I wish: If only 30-35% of those with BAV ever need any
intervention.... hows come it seems like everyone who has it, eventually
gets intervention?

IF you are going by many of the people that are members here are having /anticipate having intervention, my guess is because most people start searching for information when their doctors tell them surgery will be sooner than later, and the majority either aren't even aware of their BAV or they figure they will start joining groups when or IF they are told surgery will definately be needed in the future. So it would seem that everyone who has it needs intervention, if you are going by the members who post here.

 

[river-wear]

I do have bad anxiety.... that's true.
But it centers around having a wonderful wife, a 4 year old daughter, and
a 5 month old son. I want to be the best dad/husband I can be.

Then enjoy them instead of fretting about the remote possibility of needing surgery in 30+ years. Also take comfort in the knowledge that even if your valve did start to leak or develop stenosis, it takes awhile before you get serious symptoms, much less need to get it fixed. I'm older than you, with severe leakage, and STILL don't have any discernible symptoms at all. (They first heard my murmur when I was 4, and back then said I'd need surgery by the time I was in high school!) Don't let this distract you from your young kids.

Oh yeah, one more thing - I just heard I "might" have a bicuspid valve about two months ago. Not that it changes anything.

Michele

 

[skeptic49]

Yea, Scott...your fine except you need your head fixed

I'll be 61 next month and even with a dilated aorta and aortic stenosis I'm good to go for the time being.

Quit worrying and live life....have fun!

Jim

 

[Ross]

Never ever get caught up in the statistics game. That is the largest misleading factor for deciding things in my opinion. There are so many variables that fit into the equation that no matter what study you look at, not every single variable will be part of that study. In other words, your chasing your tail nearly all of the time.

 

[Roxx_yer_Soxx]

So wonderful to get such great support from all of you.
You all truly have made this a much brighter day!

I have the day off work, and my wife took the kids to her sisters for
a jewelry party with some other women.

So here I sit feeling sorry for myself...

Thanks to all of you, I am going to get off my butt... go workout...
then go Christmas shopping for my family....

It is my prayer that with the support of this forum, along with the reassurance of my doctors, I will realize that even if I have complications in the future.... it is just that...in the future..... and I shouldn't waste today worrying about it.

Peace & Love to all of you,
Scott

 

[Danny]

Scott, you can still come around and visit us here!

 

[Roxx_yer_Soxx]

Scott, you can still come around and visit us here!

Oh Danny,
I sure will.
I don't plan on leaving the forum.
This is a wonderful place I can tell.

I have simply got to train my mind to
stop obsessing on the "what if's"

I was acting like I needed to plan a funeral, when
my doctors were acting like I had a hangnail!!

The truth is...anyone can go get a head to toe body
scan done, and something slightly abnormal is bound to come
up on anyone.

It's what they do with this info that seems to make all
the difference. I was told I have a slightly abnormal aortic valve.
Maybe it's BAV? maybe it's a odd shaped trileaflet?
Most people when told what I (that nothing concerns either Cardio)
would forget about it....

I on the other hand freaked out, and spent the last 6 months on Benzo's
& SSRI's because I was so freaked out by this.

I was irrational, I overeacted, and it will take the support of caring people
like those on this website to help me get my mental health in order.

I plan on staying!
Scott

 

[Ross]

Scott the worst thing that can happen is you'll need it replaced. Now if this were 1940, that might be a problem, but not so today.