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

[Roxx_yer_Soxx]

Again,
I would like to thank you all for making me feel welcome here.

This morning, before I made my first post......

I was convinced if you have BAV or a abnormal TAV.... you might as well
schedule the surgery now.

I now realize that is not always the case.

There is no doubt that someone who sufferes from high anxiety like
me would be much better off not knowing......

It is my hope that my body has taken me the first 31 years with no
problems whatsoever.... I will continue to take care of it the best I can
to try to get at least another 40 years.

My one concerning thing is the Aortic Root.... I am 3.4, which is still in the window of "normal".... but does everyones grow with age?

I mean.... if ALL roots grow 2/10th's every year..... then I will need surgery at some point for sure.

But is it humanly possible for a root to stay approx. the same size through one's adult life?

Thanks,
Scott

 

[traveler]

[snip ...]
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."

[snip ...]

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).

[snip ...]

My wife has been in the space you are in for more than 30 years. In 1979 she was diagnosed with aortic insufficiency had a bunch of tests and was told she would likely need surgery in the few years. We moved and got a new cardiologist and he gave her the best advice she got. That was get test every two years and don't worry about it. About 10 years ago she was at the point where her cardiologist said it was time for surgery ( we had moved several times and didn't really like or trust him). Second and third opinions at a major university hospital said -- not yet. She was told that she probably had another 10 years with medication and careful management - and to wait as long as possible since the surgery was getting better and better. At that point she was told to not do strenuous weight lifting but she can still carry a 50 pound pack at high elevation with her doctors blessing. (She weighs 110 pounds so she's carrying almost half her weight.) Her aortic valve condition is "moderate" and two other valves have mild leakage. We're told she'll probably have surgery sometime in the next 5 years, maybe sooner. Our current cardiologist says that things often fall apart in your fifties. But the results of her tests haven't changed very much in the past 10 years and so we're hoping she avoids surgery completely.

In any event in the past 10 years the surgery has gotten better and the options are better. She continues to travel and climb and live without the concerns of coumadin. She's at the point where a tissue valve starts making sense. So waiting and being patient have been well worth it for her.

I should mention - while she was waiting. I suddenly and unexpectedly became the patient and had a repair of an aneurysm and a quadricuspid aortic valve in February 2007. That has not been as easy and straight forward as it would seem and there a number of issues that arise before and after surgery. So you can't always delay the surgery and the surgery doesn't make everything just as new. So don't be too eager for surgery -- trust your doctors and be grateful.

Traveler

 

[Roxx_yer_Soxx]

I should mention - while she was waiting. I suddenly and unexpectedly became the patient and had a repair of an aneurysm and a quadricuspid aortic valve in February 2007. That has not been as easy and straight forward as it would seem and there a number of issues that arise before and after surgery. So you can't always delay the surgery and the surgery doesn't make everything just as new. So don't be too eager for surgery -- trust your doctors and be grateful.

Traveler

Well said Traveler,
Today...after this forum made me feel better..... I did a high intensity weight lifting workout for 90 straight minutes..... I hardly ever sweat, and I hardly ever get winded..... I have a lot to be thankful for.

My 2 cardio's have both stated that no surgery now or in the future will make me any better than I am right now.

My one cardio was a coroner asst. for 12 years..... he told me 2 things that always make me feel better:

1) Most people find out about their bicuspid at their autopsies.
2) While every medical journal says .5 to 2% of the population have a bicuspid, he said he feels like it is more like 5 to 8% in reality..... and he told me that a full 10% probably have some sort of deformity of the aortic valve if you were to be technical.

 

[river-wear]

So you can't always delay the surgery and the surgery doesn't make everything just as new.

Sad but true. And exactly why the longer you can safely wait, the better.

Michele

 

[Marguerite53]

Hi and welcome to our wonderful community.

I like that line from the coroner turned cardio.... "most people find out about their bicuspids at their autopsy". My guess is that most of those people were also very old!!! The point is; knowledge is power. You have been given a gift of knowledge. You know that you can have an echo done every 12-24 months and they can keep a careful eye on that root measure. YOU DON'T HAVE TO WORRY ABOUT IT. You know that you will have it looked at every 2 years at least. You know you have a specialist whom you can call during each 2 year waiting period if you have any questions.

I found out about mine by murmur just after I'd gotten married. I'm a worrier, and anyone who knows me will tell you that I'm anxious. But for some reason I actually believed my cardio when he told me that I wasn't in any danger. I was told to get an echo every 5 years, which I did. I was told what to watch out for ( shortness of breath; like at the top of the stairs; feeling like an elephant was sitting on my chest; dizziness, etc..). So, almost 25 years later, and after having easily borne 3 children (6 pounds, 8 pounds and 10+ pounds ) when that moment came when I thought, hey, I am out of breath these days; I scheduled an echo and sure enough, things were closing up. But I waited 3 more years after that for my AVR (aortic valve replacement) because it took that long for my heart to be seriously enough impaired to warrant a serious surgery.

Be happy that your aortic root is not so enlarged as to warrant concern!!! That is fantastic news!! You've been given the best kind of "hall pass". You can live your life without restriction!! AND you have the information to keep tabs on a potential problem Lucky guy!!!!!

So go find a good psychologist or counselor and get some coping skills in place. Are you able to consider alternative methods? Have you thought of acupuncture? Massage? Naturopathics? Look into these things if you have any available in your area.

Please stay with us and wrestle these feelings for awhile. But then, go back to your family. Those children need you. We are a group of mended hearts here. Yours is such a long way off. You shouldn't give it much thought at all as you go through your days. Choose Valentine's day (or therabouts) to schedule your echo every year. I mean all we see are hearts everywhere anyway that time of year. And then for the rest of the year -- forget about it!!

We know this stuff is daunting. We really do. I am not trying to belittle your feelings at all. I just really want to have you hear me (us) when we say you really need to let this worry go once you have satiated your need for understanding and information. Really.

Best wishes!

Marguerite

 

[Roxx_yer_Soxx]

So go find a good psychologist or counselor and get some coping skills in place. Are you able to consider alternative methods? Have you thought of acupuncture? Massage? Naturopathics? Look into these things if you have any available in your area.

Please stay with us and wrestle these feelings for awhile. But then, go back to your family. Those children need you. We are a group of mended hearts here. Yours is such a long way off. You shouldn't give it much thought at all as you go through your days. Choose Valentine's day (or therabouts) to schedule your echo every year. I mean all we see are hearts everywhere anyway that time of year. And then for the rest of the year -- forget about it!!


Best wishes!

Marguerite

Excellent advice and post. I have just started seeing a psychologist, and hopefully I can get my anxiety under control.

 

[MarkU]

I was first diagnosed at five years old, but lived an active life without restrictions or symptoms for 41 years.

I always had annual checkups, including a couple of catherizations along the way. My doctors always mentioned the possibility of needing a replacement down the road, but also said it might not ever be a problem.

I was always active in sports in school and wrestled and played varsity tennis for a couple of years in college.

After college I continued to play tennis, run and became an avid weightlifter.

I eventually started to develop symptoms (shortness of breath, chronic fatigue, fluid in the lungs) at age 47. My symptoms came on very rapidly and soon were having a major impact on my activity and lifestyle. At that point my cardiologist recommended that I have the surgery within three months. I felt bad enough that I scheduled the surgery as soon as I could.

That was nine years ago, and still feeling fine with my mechanical valve.

My advice would be to just keep getting checked regularly and not worry about it until the doctors see something or you start to develop any symptoms.

Good luck,
Mark

 

[Roxx_yer_Soxx]

Also guys, as you read through my posts, you will see where
I have stated where my Cardio was not going to tell me about
my BAV or abnormal TAV..... I do not fault him for this.

I have had 6 or 7 appts. with him....
and I get too nervous and panicky to
even do the appointment in a room.

We either do the appointment in the lunch room, the lobby....or one time: in my car..... I am not joking. (It's not easy to get a 61 year old Cleveland Clinic doctor to sit in your car for 25 minutes and answer questions)

And that's where I stand now.... I believe the cardio when he says it may be 35 years before this issue needs addressed.... or ever.

The problem today is the dizziness, and eyes being unable to focus.... and the panic attacks..... etc..

My doc's tell me a BAV or malformed TAV that is functioning perfectly, with no insufficency, or stenosis..... cannot be the cause of these symptoms.

That's why I have started to see a psychologist.
And this is why I am so appreciative of your comments

Thanks

 

[Ross]

Yeah well I almost require Versed to even walk into a hospital now a days.

 

[Nupur]

Welcome to the forum! Looks like you will be in the waiting room for a LONG time, and hopefully never get out of the waiting room into surgery. I totally understand about the panic and anxiety part. There are days when I wish I was never diagnosed until I was ready for surgery. I had numerous panic attacks in the months following my diagnosis, but of course, in my case, the surgery is a "when" not "if" : ) I still go into major anxiety mode whenever I have some symptoms.

Try to relax and get the thought that you have a "heart condition" out of your head. I know it is easier said than done. But you have to live your life, and count your blessings. The fact that now you will be monitored is a big blessing.

Here are some lines that I keep in front of me at work and home and has helped
me (well, there's always Xanax : )

I must not fear.
Fear is the mind killer.
Fear is the little death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where fear has gone there will be nothing.
Only I will remain.

 

[Roxx_yer_Soxx]

Hey everyone!
Hope everyone is having a good day.

I am sooooo newbie.... i have a few more questions if you nice folks don't mind:

1) A 1.34 max aortic velocity..... is that number ok?
2) 2.5 valve cusp sep...... is this ok?
3) "Trace Pulmonic Insuffiecency"....... another finding I obsess over. Is this a problem?

I would be lying if I said I haven't spent the last few days obsessing over my Echo results.

I just wish I knew if I had a true Bicuspid, or a abnormal trileaflet? Maybe it doesn't matter.

Every dizzy spell, or PVC, or hard to focus vision moment I have..... my panic disorder (which I have been dx'd with) gets the best of me....and I blame this "bicuspid" on.

My docs say it's 99.9% impossible for me to have any symptoms from a possible BAV given my test results.

This is the one time gang that I wish someone WOULD tell me I am losing my mind.

 

[river-wear]

I just wish I knew if I had a true Bicuspid, or a abnormal trileaflet? Maybe it doesn't matter.

Doesn't matter. Honest.

I recently asked the same question about "trace" insufficiency. My last report said my three "good" valves had the same issue. The folks here (Al Capshaw in particular) said that's just fine and completely normal.

If it helps: you're losing your mind.

 

[Roxx_yer_Soxx]

If it helps: you're losing your mind.

Thanks..... and you are probably right.
What about the other numbers?

12 months ago.... I knew of none of this..... had no symptoms....etc

Now.... I am either experiencing symptoms, or my mind is creating them....

My family doc said 1.34 max velocity is probably better than 99.9% of the population....so I take it in this catagory a low number is good.

I know I am a nusance....my apologies.

 

[Bill B]

Your cardio is right (you probably have another 31 years before anything significant happens with your valve). Come back in 30 years and let us know how you are doing. In the meantime, try to enjoy life.

 

[river-wear]

I don't know about the other numbers. But I am 99% sure that if they were a concern your "big mouth" cardiologist ( ) would have said something.

 

[jjay32]

Your numbers look great. I have had a stable aortic root at 4.0 to 4.4 (up and down) for the last 10 years. Half of BAV valves have no problems, getting an echo every couple of years seems right on the money.

 

[Kathy McCain]

Hi Scott,

Your current problem is ANXIETY. You have to somehow control it, not the other way around. I sometimes have problems with this. From my understanding anxiety is quiet common though.
I was diagnosed with a small murmur when I was twenty three. I was born with a bicuspid valve. It wasn't until six years ago, (52) I was diagnosed with aortic stenosis. After that it was regular echos, until at age 56 my cardio said, "I think we need to have this surgery". That's quiet a long time to sit around worrying and waiting! I believe it will be quiet a few years, if ever, before you need the surgery!

My advise to you, although I know at times it's tough, is to just go on living your life as you used to. Forget about this. In the meantime go for your echos. Just don't, what if yourself crazy!

Your Dr's are right. Sounds like your in excellent hands.


Enjoy your life!

 

[Roxx_yer_Soxx]

Thanks to the people on this forum.
I just had probably the best, most relaxed weekend that I have had
in over a year.

Essentially, this forum is filling in the missing pieces of the puzzle between
what my doctors tell me and what my worried ridden mind concludes.

Thanks to this forum, I am pretty sure that I have learned that:

1) Even if I have BAV, not all BAV's cause problems.
2) My numbers look good for 31, if I ever need surgery, it will likely be several
decades from now.
3) The weird sensations I feel are likely more due to anxiety than they
are a from a BAV or odd shaped TAV which has no stenosis or regurge.
4) If you guys are echoing the advice of my doc's.... there must be a reason.
5) I wish Al Capshaw would clean out his inbox so i can send him a PM.

 

[ShezaGirlie]

Hi Scott,
I don't know anything about anxiety, but I thought I'd give you my little experience. At age 18 I had to have a college physical and a "heart murmur" was detected. I went to the best heart doctor in San Antonio, he did a couple of tests and told me to "go and live your life".

I did and never once during the next 37 years thought about my heart until age 55 when it hit like a ton of bricks and I landed in the ER, had OHS 4 days later and went home a few days later.

So I hereby grant you another 37 worry-free years..!! Go enjoy life..

 

[Jeanie]

Roxx (Scott?) this is a crazy question, but how much caffeine do you consume per day? Do you ever drink those super caffeinated drinks like (can't think of names right now)? My Mom used to get panic attacks until she stopped consuming caffeine. Although I agree that you seriously need to get some help with the anxiety (either medical, take up yoga or develop strong religious faith or?), there may still be some physical reason for the anxiety but it may just be something you are drinking, caffeine, guarana laced energy drinks or perhaps you just are hyperventilating? Aspartame also can mess with body/brain chemistry.

This next part might at first appear to be 'mean' but please consider it as some tough love type of advice from someone old enough to be your Mother. A little background on me, I have had a murmur since early childhood, and first diagnostic indication that it was anything other than 'functional' was an echo done in 2005 when I had my appendix out. Previous determiniations were 'not to worry'. At that time in 2005, some aortic stenosis was found, more diagnostics were recommended (that I never got around to) and I was told what symptoms would tell me that the time for further diagnostics and/or intervention had arrived and could no longer be postponed. That time has arrived. I called for a cardiologist appointment just before mid December and the earliest appointment I could get is mid January. So, that brings me to the point of, if there are others like you, who have been reassured that they are 'fine' who still persist in taking up valuable cardiologist time with hypochondriacal issues whilst people such as myself who really, really need to see a cardiologist are waiting, that makes me mad. So, put on your big boy pants, stop wasting time on this anxiety crap and go play with your children.

Jeanie (have no clue what kind of aortic valve I have other than stenosed and getting worse, diagnostics coming up, and believe me - if you start having an aortic valve that is really malfunctioning, you will know it)