Sil,
Sorry to read of your daughter's troubles. Decisions about health care can be extremely confusing and frustrating when doctors disagree.
The fact that both the Cardiologist and the pediatric cardiologist agree on a "wait and see" approach is reassuring to me that your daughter can avoid immediate operation. At our institution, the cardiologists generally decide which patients get evaluated for surgery -- the surgeons always have the right to refuse surgery of course. Internists and neurologists opinions would be considered only under special circumstances; their opinion would not generally be sought.
I would strongly recommend seeking an additional opinion from a large center with specialty in pediatric cardiology and cardiothoracic surgery. Be sure to take echos,
ekgsAtrioventricular block, ekg tracing
Ecg
Exercise stress test with you when you go.
Hope that helps.
My wife is asymptomatic, so we're currently in a holding pattern. It sounds like your daughter is suffering mild symptoms, so your situation might be different.
For what it's worth, we're basing our decision on the chance of a successful valve repair, and have asked our surgeon to analyze the valve in that light. The same strategy might be relevant to you and your daughter. If there's a high likelihood that your daughter's valve can be repaired, you may want to consider earlier surgery. If not, you may want to hold off. That piece of the puzzle might make your decision a little more clear.
If she is asymptomatic under mild exercise, close to the ideal weight/height for her age and manages her life to exclude heavy lefting and exhaustion, physical or mental, she could postpone surgery for a very long time. Her Weight, blood pressure and
other vitals being normal, she could go quite some time before requiring surgery.
Even with opinions that are unanimous, "timing" is a tough call to make. We who have had it for decades waited till technology provided more assured options, in many cases because we had only risky choices.
If she is a very active, athletic, high energy teenager with a desire to lead a very active life, the regurg valve might put a bit of a damper on her lifestyle choices. She is likely still in growth stages and in a few years when she is fully matured she may then be a better, more stable candidate for replacement or repair.
Mitral Valve replacements and repair subject the patient to A-fibrillation risks post-op. Perhaps by waiting a few years the techniques for truly minimally invasive mitral valve surgery to will give her the best possible chances to get it done with less risk of that event.
If a third cardiologist recommends putting off surgery till later, I'd stick with that recommendation to buy more time, to 'allow the heart to tell' when IT needs surgery.
As long as their is no permanent damage being done to the atrium as it increases in size due to the leak, most cardiologists will likely postpone surgery.
You have time to look into the various options open to her and it will be time well spent checking into the experiences and methods of others.
Anothe site you might want to visit is:
http://www.valvereplacement.com/forums/index.php
Hope this helps a bit.