On April 20, 2012...

Hey Vel.

Don't have a journal. Just lurk in the guestbooks. Like THE Tiger says, a phantom.

I just did some Googling - always a dangerous thing, but useful to generate questions to ask of the experts. So what follows is from that plus info I've gleaned over the last year or so of my "adventure".

Disclaimer: I am not a medical doctor and this is not medical advice. I do offer peer advice though: get second opinions, do lots of research, ask questions all the time, and figure out what is best for you.

Over the years literally thousands of lives have been the price of the collective learning curve on how to treat valve disease. A little grim perhaps, but each of us that's been under the knife has made it easier for the next patient. The flip side of that is that you don't want to be on the steep part of somebody's learning curve if you can help it.

At the Mt. Sinai site (www.mitralvalve.org) there are videos on mitral valve repair in the setting of rheumatic heart disease. A video there advocates that every mitral valve where surgery is considered should have a repair attempted as long as the surgeon is willing to give it a go. In other words, the surgeon spends the first 45 minutes or so of the surgery working to repair the valve instead of going straight for replacement. Because long term outcomes for repair are significantly better.

What outcomes? Valve repair gives patients back their natural longevity once clear of the operation (30 days or so, during which there is sadly a non-zero loss rate). Looking at the survival curves, valve replacement patients suffer a 2-3x increase in risk of death over time. (For example see figure 3 in http://circ.ahajournals.org/content/108/10_suppl_1/II-90.full) That's roughly the same risk increase you'd get from smoking 2 packs a day. Ouch.

The teams that have the best outcomes are the ones at centers of excellence (like NY Mt. Sinai, the Cleveland Clinic, etc., or a major university teaching hospital like UCLA). There are several reasons. First, they do a dozens to hundreds of surgeries a year, have continuous improvement processes in place, have rigorous training programs, and so are generally the most experienced. That all makes them highly proficient. Second, they have a high repair fraction, typically greater than 90%, which in itself improves outcomes.

The American College of Cardiologists' guidelines state, "MV (mitral valve) replacement in which the MV apparatus is resected should almost never be performed. It should only be performed in those circumstances in which the native valve and apparatus are so distorted by the preoperative pathology (rheumatic disease, for example) that the mitral apparatus cannot be spared. As noted previously (Section 3.4.9), artificial chordal reconstruction does extend the opportunities for repair in some such patients with rheumatic MR." These guidelines are available online at the URL

http://circ.ahajournals.org/content/118/15/e523.extract

Have the guidelines in hand for conversations with your cardiologist and surgeon and when going for a second opinion. When discussing treatment, go through the decision trees with him or her. If they are following the guidelines they will be generating data from tests that rigorously support the decision points. Ask to see that data and have them explain their thinking. They should be happy to do so.

Given that the guidelines state that valve replacement should almost never be it strikes me as wise to seek a second opinion. If the second opinion concurs, you'll have confidence that you're on the right path. That in itself is huge. If they don't concur you may suddenly have a better option available. Both outcomes are good. Insurances usually cover second opinions. Lots of folks on this site have gone for second opinions so it is totally ordinary.

Probably wrote too much. Keep the beat bro -- DVB