Severe MVP with Regurgitation. Timing of surgery in a young patient.

[barry70]

I am 34 years old.  When I was about 20, I was diagnossed with MVP.  I was having panic attcks at the time associated with very fast heartbeats.   In the years that followed, those symptoms went away which was nice.  I had echo's every few years in my 20s until about two years ago.   I went for an echo here in NYC where I live and was told I have MVP with regurgitation and it should be followed closely with annual echos and then check ups at six month intervals.  He did tell me I would likely need surgery many years down the road.  

To date, I have no symptoms (except a skipped beat or two maybe three times a week) and my heart is in good shape.  I know my EF was 65% last March.  Anyway, I recently had a child and applied for life insurance and I was flat out rejected twice in a row for "severe mitral valve disease".  That freaked me out and that is when I started digging deeper.  I found out I have 4+ regurgitation.  I saw the head of cardiothorasic at Mt. Sinai in nyc and he is in favor of surgery sooner reather than later.   He says the general thinking keeps leaning more towards operating on young asymptomatic patients before symptoms arise - which he guarantees they will at some point.  Do you agree with this aggressive approach? I believe my cadiologist that I usually see (he is associated with Lenox Hill) is not in favor of this as he thinks the risks of surgery outweigh the risks of my condition in its present state.  I know it is controversial and the Mt Sinai Dr told me I would get different opinions from different doctors.  My next Echo is next month.  Thanks!

[CCF-M.D.-MJM]

Hi Barry,

This is a very good question--the answer is in evolution.  If you ask 10 doctors you are likely to get 2 or 3 different answer.  Here we favor an earlier intervention, much like the surgeon at Mt. Sinai.  The thinking is to do the surgery before damage is done rather than waiting for the initial signs of cardiac dysfuntion.  The operative mortality of a mitral valve repair or replacement (depending on the valve structure) carries a VERY low operative morbity and mortality (risk of complications including death).  

Your cardiologist concerns are valid.  He does not want to put you at risk for complications if you aren't having symptoms yet. Eventually I think the guidelines or standard of care will evolve to earlier surgery, but for now that standard is only practiced at some centers.  

Without seeing the echo and evaluating in person, I can't weigh in on whether I think you need surgery.  Only your doctor can do that.

This is a tough decision.  I hope my answer helps.

[barry70]

To clarify, the subject really should read:  

"MVP with Severe Regurgitation - timing of surgery in a young patient".

[DottyCece]

I just want to share what my experience was in this situation.  I had a MVP which was diagnosed when I was in my 20's.  After childbirth, it was recommended that I get periodic Echos and see a cardiologist.  I did go pretty regularly and the cardiologist never indicated to me that I was in trouble but that things were fine and I should come back next year.  Well, he suddenly left the practice and I never got another cardiologist.  My primary physician never told me that I needed to continue with echos etc.  After about five years, I developed a sudden onset of atrial fibrillation.  Echo showed sever regurgitaiton in the MV and TV.  My atria were enlarged and EF at 55%. I did have some peripheral edema and arrhythmias that persisted.  Surgery was recommended asap.  I waited about five months before I had surgery.  After surgery, I needed a pacemaker and for a year had atrial fib/flutter that didn't respond to ablations so I had about 9 cardioversions over that time.  I had heart failure symptoms but they could figure out why.  It turned out that there was a problem with the prosthetic valve implant.  I then had a redo open heart with maze procedures for the atrial Fib.  I did well after the second surgery for about three months then develop severe heart failure.  My EF had dropped from 50% to 30%  Everyone had ideas about the etiology but there was really no clear thing to point to.  What my cardiologist believes that that I did develop damage during the time that I was not following up with the cardiologist and that I waited too long to have surgery.  If I were in your shoes, I would have the surgery before you get symptoms.  You are young and healthy, I presume, so you should do very well.  The surgery really isn't that bad.  Go to someone who does a lot of them and to a center that sees and does a lot of them.  It is always better, in my opinion, to go to someone and someplace where they have lots of experience.

Good luck to you.

[barry70]

Thanks for the response.  After my next echo next month I will talk to some more doctors and make the right decision.

And thanks Dotty for sharing your story.  I am healthy and young and I live in NYC surrounded by many great hospitals, so in the end, I would choose someone very experienced.

[uptowngirl]

Hi Barry,
I also am a young MVP +2/+3 patient.  I was first diagnosed at age 17, but have been followed well.  Like yourself, I really feel quite well, but I agree with the others who say it's best to be treated,surgical repair BEFORE symptoms arrive.  That is the plan my cardio and my self have in motion.  I also have frequent echos.  

DO you take any meds?  Just curious.  Do they help?  Do you have a family history of MVP?  I do.  

It sounds like you are surrounded by great professionals in your area, so that is a plus.

All the Best,
Uptowngirl

[barry70]

I take Accupril for slightly high BP which my cardio increased in doseage a couple years ago as he thinks it will help slow down the MVP progression somewhat.  I take Lipitor for cholesterol.   And I take Nexium for acid reflux.   As for family history, none that I know of interestingly enough.  I do wonder if a type A personality has anything to do with it...

[Gaspipe]

Just a question and thought ...you seem young for lipitor did you try diet excercise etc?  I just thought with no family hx of CAD you must have had high cholesterol or lipid ratios that were not great?

[Carolina03]

Hi,

ValveReplacement.com is a valuable support community online where you can ask questions about what it's like to go through OHS, etc. The people who frequent the forum are amazingly intelligent and compassionate.

All the best,

Carolina