Diagnosed with a Bicuspid Valve....need opinions.

[PeteCrev]

Hello-
I’m a 38 yr old male that was diagnosed with a Bicuspid Valve a year ago. Had an ECHO and Stress Test done and said I had a 1.5 opening….I believe the norm is a 4.0. Doc told me nothing really to worry about probably about 10yrs till I need any kind of surgery. But when I do need surgery they said perhaps the ROSS Procedure.
Now just went for my annual ECHO and changed doctors and now it reads I have a 1.0 opening and now leaking. I read online that between .7 and 1.0 is severe?? I’m confused…
My Symptoms are:
Dizziness
Headaches
Heart Palpitations
Shortness of breath when I make sudden movements.
But all these systems I just realized when I was diagnosed and not really sure if it’s all in my head.
The Doc wants me to go back in November for yet another ECHO…and maybe tell me my options….Not sure. I’m hoping he clears me for surgery. I would like the ROSS. I just feel like I’m a ticking time bomb.
I’m all new to this….would like some advice from you all.
Thank you

 

[Heart Of The Sunrise]

If you are near Philadelphia, go to the University Of Pennsylvania and make an appointment with Dr. Bavaria. He is fantastic! I was asymptomatic. You have significant symptoms.
I personally would not wait until November. If your ascending aorta is dialated near 5.0 cm, you may be a ticking timebomb.

 

[Cooker]

Pete, welcome to VR.org. Great place to get info... I would get a second look from another cardio doc ... you want to get this fixed before you have any lasting damage to your heart. Try not to worry too much.

 

[neo]

Diagnosed with a Bicuspid Valve....need opinions.

If you're going to get a Ross Procedure, save your time researching it and call Dr. Paul Stelzer at Mt. Sinai Hospital in NYC. He has done more Ross's than anyone and is a really great person as well.

 

[PeteCrev]

Thank you for your referral. I also heard about Dr. Stelzer in Manhattan that specializes in the ROSS. Still very confused why is the cardio waiting????

 

[PeteCrev]

Can I just call the Surgeon or do I have to wait for the Cardio Doc to make the call? I feel like things are not moving fast enough and I have great insurance....I don't get it!!

 

[pellicle]

Hi

Just wondering why a ROSS and not a replacement. All the prosthetic valves are good these days.

But no matter, don't panic , its all treatable and you get to keep doing what you were doing before

Can you explain a little more?

 

[PeteCrev]

Pellicle-
Wanted the Ross so I would have to be on blood thinners forever and so I wouldn't need surgery in 10 years when the valve goes bad again....and I know the ROSS is no guarrantee.

 

[knotguilty]

I know my symptoms seemed to get worse once I was told I may need surgery. You do have to get yourself educated and this is a great place. At 1.0 opening you are probably in need. In my case, I was at or less than 1.0 and they wanted to replace the valve early while my heart was healthy. In my case I had no other issues with my heart or blockages and therefore my prognosis is better down the road, at least that is what I was told. When they took the old valve out it was severely stenosed. All your symptoms you describe are typical symptoms, and you do need to get checked out promptly. They will want to do a cardiac cath to ultimately know for sure and confirm what is going on, and there is nothing to that. I know everybody is recomending doctors, mine is in the signature below. The Heart House did a very good job of checking me out and making me feel confident. I was originally going to go to the University of Penn but I knew of a couple people who had their valves replaced at Cooper and decided to go there because of their recomendations. Glad I did. It helps to be able to talk to someone and we are all here for you, don't worry, you will be fine. I am from South Jersey if you need me.

 

[PeteCrev]

knotguilty-
Thank you....just scary...2 kids under 6 and want to take care of this while i'm young and healthy except for this. I know the ROSS is tricky and only a handful of doctors in the world can pull it off.....i'm just torn. Not sure what I want to do....all i know is I want to do something about it now.

 

[knotguilty]

It is important to be proactive. It is your life and if you feel the need to call the doctors, do it. Time waits for no man. I too have kids, three of them, all home. And everyone here completely understands how scary it is. The worst part is what you are going through now and the wait for the surgery day. Keep us posted on your progress.

 

[PeteCrev]

Thank you for the kind words....and will keep you posted.

 

[Duffey]

I'd call Dr. Stelzer's office myself. You don't have to have a cardio referral. Stelzer will want a copy of your Echo and stress test. It's possible that the latest echo report is showing a smaller opening due to a difference in equipment or techs which might explain why the new cardio is taking a wait and see approach.
Anyway, Dr. Stelzer can help you sort it out. I contacted him before my 2005 replacement. He's a wonderful surgeon and a great human being.
Good luck!
Mary

 

[neo]

Diagnosed with a Bicuspid Valve....need opinions.

I second what Duffey said. Call Stelzer yourself. Send him a copy of the echo and/or MRI (send actual cd). He'll analyze it and talk you through it.

Here's his number:

(212) 659-6871

 

[Tirone]

I'm 10 years younger than you are and was in a similar situation a couple of months ago. After I was told about may severely leaking aortic valve I suddenly felt symptomatic with shortness of breath and dizziness. This disappeared pretty fast and now I'm back to normal doing sports and working like before. The only thing that changed is that I'm enjoying (and appreciating) my life much more. If your doc wants you to go back in November he is very sure that you will make it till the next appointment without any emergency procedures and that there is plenty of time left to make a decision about surgery... The indication for AVR depends on many different factors and not only on the echo. Your cardiologist can decide best, when it's time to see the surgeon. Don't worry too much, enjoy your life!

 

[Mork]

Hi Pete,
I basically was in the same boat as you. I'm a year younger and I've known about my BAV since birth. I started getting symptomatic, so they had me do a stress test. I didn't do well, but my echo showed a 1.4 opening. Fortunately, my cardio was aggressive and had me get a cardiac cath. That showed the opening as 0.8. I'm scheduled for surgery on the 27th. All I can recommend is be proactive and be your own advocate. Good luck.

 

[epstns]

Pete - Your cardio is probably waiting because he/she is following the standard protocol. They have ways of estimating the odds of your death in your present condition. They also can estimate the odds of your death during or immediately following surgery. As long as your odds of death in your present condition are less than the odds of death during surgery (which is about 1 or 2%), they wait. Once you develop any of the "cardinal" symptoms (shortness of breath, fainting, chest pain), your odds of death in your present condition increase beyond the odds of death in the OR and they proceed to surgery. Many insurance plans require this approach, although yours may not. You could check with your insurance company, and if their decision factor is related to empirical measurements (valve opening, etc.), then they may allow you to choose the schedule. It is also worth the call to see if they require that a cardio or primary care physician refer you to a surgeon or not. If so, guess you stay the course; if not, proceed on your own schedule. A surgeon will certainly review your case and state whether or not they would operate now.

 

[PeteCrev]

Thank you all…..I’m so happy I found this chat site with wonderful people and advise.
Can I ask all of you why you didn’t pursue the ROSS Procedure? I think that’s what I’m leaning towards….only because I don’t want o be on blood thinners forever….and the chance of surgery is less than having a routine AVR……Thoughts???

 

[Duffey]

Thank you all…..I’m so happy I found this chat site with wonderful people and advise.
Can I ask all of you why you didn’t pursue the ROSS Procedure? I think that’s what I’m leaning towards….only because I don’t want o be on blood thinners forever….and the chance of surgery is less than having a routine AVR……Thoughts???

I intended to have Dr. Stelzer perform the Ross procedure, but I suffered a significant TIA and it was decided that I should consult a cardiothoracic surgeon closer to home. At that meeting, it was recommended that I immediately schedule the surgery, and three weeks later, I underwent standard aortic valve replacement. Basically Dr. Stelzer was the only surgeon I would have perform the Ross and when circumstances intervened, time and distance became the determining factors.

 

[PeteCrev]

I intended to have Dr. Stelzer perform the Ross procedure, but I suffered a significant TIA and it was decided that I should consult a cardiothoracic surgeon closer to home. At that meeting, it was recommended that I immediately schedule the surgery, and three weeks later, I underwent standard aortic valve replacement. Basically Dr. Stelzer was the only surgeon I would have perform the Ross and when circumstances intervened, time and distance became the determining factors.

I’m leaning towards Dr. Stelzer also….I hear there’s only a handful of docs in the world that can pull it off and him being in Manhattan it’s pretty close. And only heard positive things about him.