Parachute Mitral Valve

  My story goes as follows:
  I have rare congenital mitral stenosis (parachute mitral valve). I am a 28 year old female. At age 2 surgery wanted to be performed. My mother said "no" and that was that. I saw a cardiologist once a year to see how I was doing. Then at age 11 they wanted to do surgury again. This time we went for a 2nd opinion and the Dr. told us that I did not need it. So I have been seeing the same guy since without having had surgery.
  Three years ago I had my first atrial fib episode. I was admitted into the hospital and nothing was done for a few days other than trying to convert me medically (unsuccessful) and make me comfortable. Thhey did a transesophogeal (sp?) echo and said they say a small clot in my atruim and could not so the cardioversion unless I was treated with Coumadin for 6 weeks. So they sent me home on Coumadin, in Atrial-Fib. One wekk later I was rushed back wiith CHF and hospitalized for that, then released. ..still in Atrial-Fib. A few weeks later I went back in to be cardioverted and was released after 2 days. I remained free of Atrial-Fib until 1 month ago, it happened again. This time I went into the hospital immediately and was cardioverted two days later.
  Now before all of this I was, to the disbelief of many, many doctors, very active. I did 45 minutes aerobics everyday and bike riding for 30 min. without any problems and was almost capable of doing all that once I recovered from the first bout. I am not sure how small my valve opening is, but three years ago I was told "it was very, very small" and I would definitly have surgery within a year. Well that didn't happen. However, my physician is very alarmed by this second bout and we are considering surgury heavily and considering Dr. Cosgrove at the Cleveland Clinic because of his specialty work with mitral valve REPAIR. We would rather the valve be repaired than replaced.
  Now that you have some history, I guess my question is has this procedure been done before at the Cleveland Clinic with someone with my rare deformity? What was done and how successful was it? I have no other complications of the heart muscle, only the mitral valve. I also want to add that as long I'm in sinus rhythm and my heart rate is controlled and I take all my meds as prescribed, I FEEL GREAT! I was horribly ill in Atrial-Fib. I cannot tolerate it like others can with a normal sized valve. I can't even walk across a room while in Atrial-Fib without stopping to catch my breath. That is hard for someone who is very physically active while in sinus rhythm.
  Please advise as soon as you can about this abnormality, surgical procedures and past patients at the Clinic with the same defect (if any). What is the prognosis for a patient born with congenital mitral stenosis (parachute mitral valve)?
  Much Appreciated,
  Colleen------------------------------------------------------------------
Dear Colleen,
We have done more repairs of mitral valve here at The Cleveland Clinic Foundation than we have replacements in the two years since I came here; Dr.Cosgrove is the chairman of our Cardiothoracic surgery department and very much at the forefront of this surgical repaie idea in order to avoid replacement(especially in a young person such as yourself Colleen.)
From the data you give me you definitely need an evaluation in the near future as well as a potential surgical date; given that Dr.Cosgrove's OR wait list currently goes until August of 1998 I would think the sooner your evaluation better.   If you have your recent echocardiogram and catheterization data from your local hospital and physician with you at presentation that would make the evaluation proceed more quickly.  I can not of course give out names of patients, but I can tell you that there were more than 4,000 open heart surgeries done at The Clevelabd Clinic last year, a significant portion of those were valve cases.
As you may already know, Dr.Cosgrove is one of the few if only surgeon who travel the country and the world to tell other surgeons why and how valve replacement should be performed.  It is in most cases like yours where there is no 'muscle' damage, just a valvular abnormality that these repair only procedures work so well.  Another reason why it is hard for me to give you exact numbers is that The Cleveland Clinic had been at the forefront of mitral valve repair via the minimally invasive technique.  You should seriously thind about getting your evaluation while you are stable(not in atrial fibrillation.)  It may have been a good thing that your mother did not let them operate on you as a child as that might have complicated the current situation; very few children
with congenital heart disease can be cured with surgeries as children, that is to say most surgeries in infancy are palliative an require close follow-up and often re-operations.  Although you have made it this far I do not believe you can go much longer without a repair and not do damage to the heart muscle on the right side of your heart(this is the side that sees all the backed up pressure and volume behind a stenosed mitral valve.  I spoke with Dr.Cosgrove's nurse clinician who said if Coleen plans to be evaluated by Dr.Cosgrove she can just call the cardiology appointment line @[phone] or 1-800-CCF-CARE and ask for Dr.Cosgrove.  I hope that I have been of some help, once evaluated it will be much easier to give you prognostic information as this very much depends on
whether or not a repair will work for you, if you do not need that yet, how the whole heart and other valves look.  Information provided in the Heart Forum is intended for general informational purposes only, actual diagnosis and treatment can only be made by your physician(s).