Mitral Valve Prolapse – How many second opinions should I get?

Posted by nolalady1 @nolalady1, Thu, Aug 29 11:15am

Hi all, first post for me. Long story, try to make as short as possible. I had gastric bypass surgery in 1978 and lost 100+ lbs. Four years ago, in 2015, I had a very fast heart rate and wound up in the hospital for a week. Prior to that, had a heart murmur but nothing else. Dr put me on Xarelto for a-fib, metropol for blood pressure, and a diuretic. Diagnosed with mitral valve prolapse. In 2017 my cardio dr advised surgery to repair/replace the valve but I refused surgery at that time as our 42 year old son was very sick with kidney failure and my husband and I were helping out with taking care of his family. He got a kidney last year and I told my cardio dr that I was ready to have the heart surgery. Went to Barnes in St. Louis (we live 100 miles away) and my dr there was going to to minimally invasive surgery). Surgery was aborted mid-procedure because he could not advance the catheter (or whatever is used, not familiar with the medical terms) because of surgical clips being in the way from my gastric bypass done in 1978! So I spent 4 days recovering at Barnes (from tubes being put in, etc..) As my nurse said, I got all of the pain and none of the results. My dr at Barnes wanted me to reschedule for regular open heart surgery with him after a few months, but I have put it off. My only reason for going to Barnes was for the minimally invasive technique. If I have to go through open heart surgery, I will have it done here in my town (Springfield IL) where we have excellent heart surgeons for open heart surgery.

So my regular cardio dr moved to a different state in March, and I have a new cardio dr. Like him very much. He looked at my records, listened to my heart, had me have an EKG…and told me that he didn’t think that my heart issue was very significant, right now anyway. But, he wanted me to see a surgeon for another opinion. Well, I had met this surgeon a few years ago (he was the one that I told that I would wait on surgery because of my son being sick, and I didn’t really care much for him). I went to see him, waited almost 2 hours for him to spend 2 minutes with me. He listened to my heart, looked at my chart…and said he didn’t think I needed surgery right now – this is the same surgeon that told me 2 years ago that I need open heart surgery! So,both my cardiologist and a cardiac surgeon have told me that they don’t think that my heart issue right now is serious enough to require surgery at this time.

Today the nurse at the surgeon’s office calls to set up my open heart surgery! I was flabbergasted and told her I was under the impression that it wasn’t necessary at this time. She said that my cardio dr and the surgeon looked at my echo results and decided that the valve is bad enough that it needs to be replaced…after telling me a month ago that surgery isn’t necessary as of right now.

I am totally lost on what to do. I have zero confidence in the surgeon, although I like my new cardiologist. Seriously considering coming to Mayo for another opinion since I am being told ‘you don’t need surgery now, ‘you need surgery now’…

If I do need surgery, I am willing to do it and start the recovery process. But, if it isn’t necessary, I sure don’t want to have my chest cut open, endure a lot of pain, and spend months recovering because of a procedure that wasn’t actually necessary.

Thanks for letting me rant!!!

Welcome to Connect, @nolalady1. Here’s what I found –
In many instances, having mitral valve prolapse (MVP) will not impact your health and requires no treatment. When MVP is severe enough to cause significant valve leakage, it can lead to serious complications like stroke.
If your doctor suggests surgery, he/she may suggest repairing or replacing the valve. Valve repair and replacement may be performed using open-heart surgery or minimally invasive surgery. https://www.mayoclinic.org/diseases-conditions/mitral-valve-prolapse/diagnosis-treatment/drc-20355452

If you’d like a second opinion from Mayo Clinic, please call one of our appointment offices – you can also request an appointment online. The contact information for all 3 Mayo Clinic locations (Minnesota, Arizona, Florida) can be found here: http://mayocl.in/1mtmR63

Here are a few conversations you may find useful:
– Mitral valve prolapse/regurgitation https://connect.mayoclinic.org/discussion/mitroh-valve-prolapse-regergitation/
– Mitral Valve – Repair or Replace https://connect.mayoclinic.org/discussion/mitral-valve-repair-or-replace/

I’d also like to introduce you to a few Connect members who may have some thoughts on mitral valve prolapse; please meet @windwalker @jannyw @frande @sdann777 @lamborama @cyndiblaw @yoanne @petersen73 @redtri @courtneycara19. Mentors @predictable @hopeful33250 may also have insights to share to help you figure things out.

@nolalady1, have you experienced any worsening of symptoms? Has the surgeon offered an explanation as regards to what has caused, "the valve is bad enough that it needs to be replaced?"

Liked by yoanne

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@kanaazpereira

Welcome to Connect, @nolalady1. Here’s what I found –
In many instances, having mitral valve prolapse (MVP) will not impact your health and requires no treatment. When MVP is severe enough to cause significant valve leakage, it can lead to serious complications like stroke.
If your doctor suggests surgery, he/she may suggest repairing or replacing the valve. Valve repair and replacement may be performed using open-heart surgery or minimally invasive surgery. https://www.mayoclinic.org/diseases-conditions/mitral-valve-prolapse/diagnosis-treatment/drc-20355452

If you’d like a second opinion from Mayo Clinic, please call one of our appointment offices – you can also request an appointment online. The contact information for all 3 Mayo Clinic locations (Minnesota, Arizona, Florida) can be found here: http://mayocl.in/1mtmR63

Here are a few conversations you may find useful:
– Mitral valve prolapse/regurgitation https://connect.mayoclinic.org/discussion/mitroh-valve-prolapse-regergitation/
– Mitral Valve – Repair or Replace https://connect.mayoclinic.org/discussion/mitral-valve-repair-or-replace/

I’d also like to introduce you to a few Connect members who may have some thoughts on mitral valve prolapse; please meet @windwalker @jannyw @frande @sdann777 @lamborama @cyndiblaw @yoanne @petersen73 @redtri @courtneycara19. Mentors @predictable @hopeful33250 may also have insights to share to help you figure things out.

@nolalady1, have you experienced any worsening of symptoms? Has the surgeon offered an explanation as regards to what has caused, "the valve is bad enough that it needs to be replaced?"

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hello,
well, you were flabbergasted, but I was also flabbergasted, reading your medical history. I had my mitral valve repair 2016,. I asked for a second opinion in an other hospital, because of the increase of A-fib's. they did an TEE. and unexpectabel they diagnosed a severe mitral insufficieny, although I had NO symptoms . They offered me a check of my lung function every three months, I decided not to wait, maybe the damage to the structure of my heart wall due to the backward failure would disappear (they call it "remodelling".)
I decided to have this minimal invasive valve repair/reconstruction,
I am sure my decision was right. advices of the cardiologists are based on the degree of the backward failure, especially the increase of the pressure in the lung vene is very important.
I wish you all the best, yoanne

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