A congenital defect, in which the valve has two leaflets, vs. three,

[mar148]

My daughter who is 19 complained that she was feeling some stress in her heart.  We had an echocardiolgram completed and the results were, A congenital defect, in which the valve has two leaflets, vs. three.  I will be scheduling an appointment with a doctor when she returns in a month to determine what should be done.  I am frightened and confused about what this means for her in the short run and long run.  Do you have any thoughts?  

[paperprincessj]

Hello. I've been reading all your post and I have to say I have alot to learn about my condition. 5 years ago I was diaganosed with a murmur. I met with several doctors, had EKG's, ultrasounds and dye run to determine WHAT exactly the problem is. I have a 2 flap aortic valve and a aortic valve dilation (anyurism). Here's my questions: Are there any symptoms before an anyurism occurs? If a difibilator is used on me, will it add to my issues? My doctor has put me on Beta-Blockers - will this prolong my need for surgery? He has said that we repair the aortic root first - its at 3.8, is this normal procedure? I'm 47, 125lbs., not really active, will excersice hurt? Help? How much post op downtime are we looking at? Is there anything I can do to prolong the need for surgery. I do no thave hypertension, high cholesterol, or any other health issues. Thank you in advance you for answers.

[milo_1]

Dear Mar148,
Yes the echo will tell you if there is a bicuspid valve. Yes the aortic valve only, makes sense.  I was 37 when I had the Ross procedure done. You asked if having the surgery done at an early age negatively impacted my life. Yes it has. But, and that is a big but, Since I chose the Ross (they take pulmonary valve put in aortic position, give you a donated valve for the pulmonary) a instead of a regular valve replacement, I have had complications such as an aneurysm thoracic ascending of 7.0 cms and severe aortic regurg...again requiring surgery which I am now facing.  BUT THEY DONT DO THE ROSS ANYMORE...but it has not stopped me from living a full life, no. But that is me...everyone is different. Best wishes.
Colleen

[birdlady50]

I have a bicuspid aortic valve same thing as your daughter found in may this year. I have slight chest pain with mine. They will probally do a ecg and ehocardgram once a year to keep a check on it and then if it needs replacing they wil replace it. They have told me that I will need mine replaced at some time . Just keep a eye on her. My g.p has told me to be carefull how much stenous excersise i do. I was born with mine and good luck .

[mar148]

Milo, thanks for answering,

I have a number of questions if you are kind of enough to answer:

1)  Did the echo, which she had, indicate if there is bicuspid valve disease?
2) The valve they are indicating is the aortic valve only, does that make sense?
3)  Before 34 years old before your first surgery, did this negatively impact your life (less excersie, fatigue...)
4)  Did having this impact you ability to get insurance?

Good luck, and you are so kind to write.  Mar

[milo_1]

I was your daughter 26 years ago. They found a murmur on me during a visit to my g.p. for  the flu. Send me to a cardiologist. They said I had "bicuspid valve disease", and that I was born with it. Since I had no symptoms at that time, surgery was not indicated. Finally at age 34, I started to get some shortness of breath, palpitations and intermittent chest pain. They did echo's every year, and then they said that it was time for surgery because the aortic valve was leaking severely and would only get worse if I let it go. At the time, the Ross Procedure was the way to go, with the surgeon taking out my own pulmonic heart valve and putting it in the aortic position...and putting a donated tissue valve (from a cadaver) in the pulmonic position. Flash forward to today...(but don't be alarmed...this won't be your daughter's story)...and I am 45 and facing a replacement of the aortic valve AND a thoracic aneurysm (dangerous bulging of ascending aorta) measuring 7.0cm's.  
This won't be your daughter's story because...1. they found it early 2. they don't recommend the Ross anymore...
Questions to ask the dr....
1.Is this bicuspid valve disease?
2. What does that mean exactly?
3.What valve or valves are involved and what does this mean?
4.Will you be doing regular (yearly or every other year) Echo's to plot the progression?
5.Are any of the valves leaking or regurgitating (blood doesnt go all way thru and comes back into the heart) and if so, what is the course of action.

Make sure you think the cardiologist is on top of his game. If he's not, find another.
In the short run, this means your daughter has a defect that will never go away in one form or another but it can be treated.  In the long run, if she becomes symptomatic with shortness of breath, chest pain (more frequent),she will need surgery. Many of us are living quite well with mechanical and tissue valve replacements. Hope this helps.
Colleen