I was born with Ebstein's Anomaly which is a very rare congenital heart condition involving the Tricuspid Valve. I had the valve corrected when I was 62 years old. Maybe you would like to email me so we could start a little dialogue. I think I could be helpful since I really went as far as I could with this disease before correcting it.
DVB has all the facts straight. I would add one more: you are much too young to settle for a replacement. If your surgeon can't give you at least a 90% chance of a repair (Sinai says 90% of mitral valves are repairable if the surgeon has the skill), ask why and if you're not convinced, keep shopping! My surgeon was 98% confident that my valve could be repaired, and it was. Give yourself the best chance you can get. We will be praying for you,
I had my mitral valve repaired at UCLA Ronald Reagan Medical Center in April 2011 - you might want to check them out - google ucla cardiology clinic, they are excellent and (somewhat) local to you. I'd echo Vicki's advice about sooner rather than later - provided your regurgitation is graded as "severe" and the valve is considered repairable. You probably want to take a look at the American College of Cardiologists / American Heart Association "Guidelines for the Management of Patients with Valvular Heart Disease":
Pages e580-1 give the surgical recommendations. You will need to know some of the numbers to place yourself in the right category to see what recommendation(s) apply to you. I'd suggest printing out the guidelines and taking them with to your next consult.
Evidence shows that patients with severe mitral regurgitation who have surgical repair before the onset of symptoms have better outcomes than those who wait for symptoms to develop and then have the surgery.
So sooner is better than later!
Studies published since the guidelines are clear that repair is much better than replacement, both in terms of short and long-term outcomes, so the guideline recommending repair over replacement now stands on significantly better evidence now than in 2008.
Because the surgery is not zero-risk, the guidelines also recommend that asymptomatic patients who consider repair should have the surgery performed at an experienced surgical center. Data shows there is a significant spread (2x-3x) in the surgical risk depending on where the surgery is done as measured by volume of operations (experience). You want to grab this edge on the odds if at all possible. This is why lots of folks on this site will advise to go to a high-volume center of excellence (as opposed to a community hospital).
Another benefit is that successful surgery gives you back your age-matched expected longevity.
Since my surgery I am back to a physical performance significantly better than before: 8 mile runs, 1 mile swims, 2 hrs at a stretch playing field sports, etc.
I was in exactly your situation last April. I am now 59, and was diagnosed with MVP 30 years ago with my first pregnancy. As the doctor then told me, 98% of all MVP cases never need therapy, but I saw a cardiologist every few years just to be sure. 20 years ago the valve began to leak, but again, not a big deal. At my visit in 2010, I asked my cardiologist what was the likelihood that I would get in a crisis (I was moving and wanted to know if being 4 hours away would be dangerous). He assured me that the most likely serious event would be a ruptured chord, which would cause shortness of breath, palpitations, and chest pain, which would prompt me to see him. Well, well.....at my April 2011 visit the echo showed severe regurgitation likely due to a ruprtured chord, and I was totally asymptomatic. What a shock! He strongly recommended aggressive action, like surgery right away. I did some research and in June 2011 had my valve repaired at Cleveland Clinic. I have since found out that cardiologist don't all agree about how long you should let MVR go before surgery. One good resource is Mt. Sinai's website, mitralvalverepair.com. There is alot of technical info and stats there, which I liked because I am a med tech and like data. You might feel differently. But, they say that sooner is better and that 90% of all mitral valves can be repaired, not replaced, if the surgeon is skilled enough. You should have access to some great surgeons where you live. I went to CCF because I live in rural WV where there are no good docs (also why I chose to keep my cardio in DC). Also, check out Gayle Dudley-Cole's journal. She had mitral valve repair at her local hospital, which failed and then she had re-repair at Sinai. She talks about what she learned from her experience and you may find her advice helpful.
All in all, I could have waited until I was sympotatic, but why? As my doc said, once a chord breaks it is not going to get better on its own. A repair before the leak has damaged the heart is less likely to have complications and you will recover quicker too. I am glad I didn't wait. I have no cardiac symptoms at all, and my surgeon says the repair will last the rest of my life. That was welcome news! I will be watching your journal and keeping you in my prayers.
Vicki Pierson mitral valve repair, 6-2-11
Hi Maria, welcome to the journal. You didn't say how recently you saw the doctor, but my advice to you would be let him/her know about your shortness of breath and chest discomfort. It may well just be anxiety, but better safe than sorry. My problem is my aortic valve, a little different but both can cause the same symptoms. I have known for years that I have aortic stenosis, but I went from moderate to severe/critical in only a few months. So it can progress slowly and then take a sudden turn. If you are having these symptoms you need to check it out. Be your own advocate and ALWAYS get a second opinion. There are many people on this site that have been exactly where you are, so take advantage of their advice and tips. I am having surgery to replace my valve in March, you may be able to have repair if it isn't too bad. Just let your doctor know, you know your body, don't hesitate to get another opinion.
Keep us updated and again welcome to the club!