Hello everybody, I'm new here. First post. Here's my story...
I've had MVP for a long time; first diagnosed in 2000. There’s a family history of it. Over the past 13 years, the MR from my MVP has been called “severe” and “moderate” and “moderate to severe.” My cardiologist took a watchful waiting approach. He would do an annual surface echo (TTE) and an occasional transesophageal echo (TEE). I was pretty much asymptomatic. If I had any symptoms, they were hard to recognize.
On 02/04/10 a surface echo showed moderate MR, end systolic flow reversal in the pulmonary veins, an end systolic dimension of 41 mm, a moderately dilated LV, a 60% EF, and "further LV dilatation" compared to the 2009 echo. My cardiologist was concerned and did a TEE on 02/16/10 which showed moderate MR, normal LV size, a 40% EF, and mild/moderate diffuse LV hypokinesis. The plan was to continue to watch and wait rather than MV surgery. Sadly, my cardiologist died of cancer that year.
About a year and a half later, on 08/05/11 a surface echo showed moderate to severe MR, an end systolic dimension of 40 mm, a mildly dilated LV, a 60% EF, LV impaired relaxation, and no appreciable change compared to prior studies. My new cardiologist recommended monitoring because he felt I did not meet the criteria for valve surgery.
About a year and a half later, on 04/05/13 a surface echo showed probable moderate MR, an end systolic dimension of 49 mm, a dilated LV, a 45% EF, LV impaired relaxation, mild systolic dysfunction, and global hypokinesis. This time my cardiologist recommended MV surgery as soon as possible. He did a bilateral heart catheterization on 05-21-13 which was normal. Severe MR was documented as the indication for this procedure.
I went to a well-known valve surgeon who got a TEE on 06-11-13 which showed a moderately dilated LV, a severely depressed LV systolic function, and a 30% EF. It also showed mild MR. The surgeon diagnosed nonischemic dilated cardiomyopathy, likely due to years of MR. He said I did not need MV surgery, and even if I did my heart was too weak to survive it. Neither he nor any subsequent doctor could explain why my previously severe MR was now mild.
Since June 2013, I have undergone many tests. I am on Carvedilol, Lisinopril, Atorvastatin and Spironolactone. I recently spoke w/ a cardiologist who strongly suggested that I get an opinion from the Cleveland Clinic. He is not convinced that my MV should be left unrepaired.
I have to tell you, more than one doctor has questioned why I was not referred for MV surgery in 2010 or 2011. They say that valve repair performed before LV dysfunction leads to a MUCH better prognosis and, in my case, could have prevented cardiomyopathy. They believe that I met the criteria for surgery according to the echo findings. They referred me to a number of medical journal articles on the management of MR and timing of MV surgery. For instance, a 2008 article in the Journal of the American College of Cardiology says, "Severe MR by itself is considered an indication for repair in many centers, and mitral surgery should take place when even mild symptoms appear or when EF approaches 60% or end systolic dimension approaches 40 mm." I had both in 2010 and 2011. I also had severe MR.
And I just can't help but wonder what might have been.
In any event, I'm glad I found this website. I plan to get smarter because of it.