Newbie with a couple questions

[debcroom]

I have been diagnosed with MVP since I was 3 or 4 yrs old. Never really a big deal. The last year I have been getting really short of breath and fatigued, so I went in and had an echo and a stress echo. Showed mod mitral regurgitation. Thickened mitral leaflets and calcium deposits on the leaflets that may be due from scarlet fever when I was younger. ( I am 32 now). Mildy dilated left atrium and mildy dilated left ventricle. My EF is 55%.
My resting heart rate has been around 100 and the holter moniter showed sinus arrhythmias.

My current doctor is a hypertension specialist but is not a cardiologist he is a nephrologist, so I am going to a new dr. next month.

Does this sound like I will be a candidate for a future valve replacement? Everything that I have read seems like you want to replace the valve before you have perm. damage to the heart and with the enlarging already taking place with mine I don't want to wait too much longer.

Also I was going over my number from the echo and I was reading my regurgitation volumes to be severe not moderate so I am not sure why it was read as moderate?

Any help is greatly appreciated!!!

 

[dick0236]

Does this sound like I will be a candidate for a future valve replacement? Everything that I have read seems like you want to replace the valve before you have perm. damage to the heart and with the enlarging already taking place with mine I don't want to wait too much longer.

Welcome debcroom, you will find this forum invaluable if, or when, surgery is indicated. Your current questions will be best answered when you see the cardiologist. My situation was similar to yours.....had scarlet fever(rheumatic fever??) at age 7, no problems 'til I was 30. Was diagnosed with aortic stenosis with enlarged heart....had surgery within nine months of testing(put it off as long as I could). Enlargement was reversed and I have had no additional problems. I agree that "sooner is better than later". These kinds of problems seldom improve on their own.

 

[Fundy]

Quite often it seems that the mitral valve can be repaired rather than replaced. I believe the operation risk is about half of an actual replacement and usually won't require lifelong anticoagultion treatment. As dick mentioned your cardiologist should be able to give you a good assessment of what your condition is.

 

[Mom2izzy]

I was diagnosed with MVP at age 7. I had the valve repaired at age 40 (8 months ago). I had severe regurg for several years, but no symptoms. I was being monitored closely, but probably should have seen the surgeon sooner. There is a point where the valve could have gotten bad enough to require a replacement rather than a repair. With the repair, I should never require a re-op and do not require anticoagulants. It's really just like being "good as new". I would recommend at least speaking to a surgeon...cardiologists can have a more "wait and see" approach, whereas the surgeons seem to be more proactive. I am so glad my surgery is done...my heart is "normal" now...that is something I never expected to hear! Even my enlarged chamber has shrunken (remodeled) itself right into the normal range.

I have been posting here ever since I was in the process of picking my surgeon. You could look through my history to track every step of the way. I would also be more than happy to answer any questions by whatever communication medium you prefer (forum, email, phone, etc.) My surgeon was Dr. Stephen Bolling at the University of Michigan. He has several great YouTube videos about mitral valve repair.

Good luck on your journey!
~Lisa

 

[debcroom]

Thanks for the replies. That was another question I had. If the enlarged areas would actually shrink back to normal, so that's great news to hear that they actually can!!

Do you know what the criteria are that prevents from doing a repair and having to do a replacement? I had the impression since the leaflets are thickened and calcified that they couldn't be repaired but i guess there is hope after all!! Yay! So glad I found this forum.

 

[Fundy]

There's a fairly detailed book available online "Cardiac Surgery in the Adult"
http://cardiacsurgery.ctsnetbooks.org/

that has a section on Mitral Valve Repair. It may be good reading for you in terms of what you might want to ask a cardiologist or surgeon.
Mitral Valve Repair section link:
http://cardiacsurgery.ctsnetbooks.org/cgi/content/full/3/2008/1013

 

[Mom2izzy]

I'm not sure about thickening of the valve, but my surgeon said he had to take out calcification the size of the fingernail on his pinky.

My surgeon's research (published) indicates that the factor that makes the biggest difference between repair and replacement is the experience level of the surgeon. In one of his YouTube videos, he says somewhat jokingly, "If your surgeon recommends replacement, you should replace your surgeon." (Something like that...)

 

[Mom2izzy]

Note: The post above is regarding mitral valve surgeries only...not aortic.

 

[debcroom]

I'm not sure about thickening of the valve, but my surgeon said he had to take out calcification the size of the fingernail on his pinky.

My surgeon's research (published) indicates that the factor that makes the biggest difference between repair and replacement is the experience level of the surgeon. In one of his YouTube videos, he says somewhat jokingly, "If your surgeon recommends replacement, you should replace your surgeon." (Something like that...)

Yeah, the more I look into it the more that statement seems true! Seems like they can repair just about anything now with great success rates. I think the Cleveland CLinic had even said up to 90-95% of cases could be repaired.