Mitral regurgitation

[Sil]

My 14-year-old daughter has been diagnosed with mitral regurgitation.  I am unsure about what the next step to take is. The Cardiovascular & Thoracic Surgeon wants to replace mitral valve ASAP but pediatric cardiologist states it is not necessary at this time.  A Dr. of internal medicine and Pediatric Neuro. Dr. agrees with Thoracic Surgeon.  A Cardiologist agrees with pedi cardiologist.  All Drs'. above have excellent reputations with more than 10 years practice in their field.  The majority of the Drs. rate her condition as severe while the Pedi Cardiologist who has more than 30 years in his field rates her condition as moderate.  For now I am listening to the pedi Cardiologist and hope I'm not jeopardizing my daughters life.  Some insight would be much appreciated.  She seems to be in no distress at this time, although she gets very tired very easily and needs to stop for frequent breaks.  She in no way looks sick except for her pale complexion.

[CCF-M.D.-RCJ]

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, ekgs with you when you go.

Hope that helps.

[ChristianH]

My wife (29 years old) suffers from mitral regurtitation, and I've noticed a similar trend:  surgeons seem to favor an aggressive approach, while the cardiologists and valve specialists are somewhat conservative.  

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.

[Dr. Erik]

I would heed the advice of the surgeon and have the valve repaired now. Doing it now while there are few symptoms and no permanent damage to the ventricles is the prudent thing to do. If you wait, your daugter may end up with irreversible damage to the heart which could drastically affect her lifespan. Also, waiting would forfeit the chance to repair vs. replace. A person with a repaired valve has an excellent prognosis, while a person with a valve replacement has to take coumadin for the remainder of their life. Your daughter would have an excellent prognosis with a repair now and would be expected to live a normal healthy life.

[Sil]

There is no chance that the valve can be repaired it would have to be replaced by a macanical valve.  That is the only thing that all the doctors can agree on.

[Dr. Erik]

The sooner the better to prevent ireversable damage to the heart. Think of it like this. The surgeon sees all the people who come in for valve replacement. He sees the ones who had it done right away and sees the ones who waited as long as possible before having it done. He's knows that the ones who didn't wait have a better long term prognosis because there was less damage done by the regurgitation prior to the replacement. Best of luck.

[garyr]

Having had Mitral Valve prolapse, mild anterior chordae stenosis and a +2 to regurg leak from the age of 6 till the youngish age of 57, it is possible to live a long time without benefit of surgery, provided the heart is able to withstand the burden of the leak. Particularly the left Atrium.  

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.

[MJR]

Hi this i14 year old daughter i just want to thank you all for teh support and advice...THANKS...MARY  

[Sil]

I would like to take the time to thank you for taking the time to comment on our predicament.  I have felt so unsure of every move I've been making and you all have contributed to my peace of mind.  Thanks to Garyr for the advice about the web site; after visiting it I feel I made the right decision in postponing the surgery.  A million thanks to all of you who responded to a very confused mother.