Mitral Valve Prolapse- Please talk me down

[Koolau]

I disagree , We've used quit a few cardios in the same system and get varied viewpoints from several of them. If you have a good cardio practice/clinic it's insulting to think they talk in unison or all have the same opinions.

We had to change cardiologists within our same system. The "old" one retired. They are so different in the way they approach things, what they do and say during an exam and what they prescribe. It actually gave me pause, thinking one of them must be wrong - maybe both of them are wrong. Not a good feeling. I think it's the "art vs science" issue of medicine. Throw in a bit of luck, and I just might make it to a ripe old age. I guess we'll see.

Now, oddly enough, I had to change ophthalmologists 4 times. I could scarcely tell the difference. The testing was the same as were the drugs used to treat conditions. I guess eyes are a bit more "standard" than hearts. YMMV

 

[eyenitnoy]

An update: first of all, thanks to everyone who posted with anecdotes and resources. I knew in my heart that I really wanted a second opinion but I'm a terrible people-pleaser and worried I'd offend my current cardiologist. I finally called that practice and asked for a referral, explaining that I understood there were no cookbook answers as to how this would progress and I'd like to get a second educated opinion. The nurse who got back to me was so nice- she said I could use another doc in their practice or they could suggest someone in another hospital system in their chain (Healthcare of America). I'm going with the one in their practice. They're going to call me back to schedule an appointment. Having done more research I have more questions, but I'm VERY relieved.

My concern is not so much that you are getting a second opinion from a cardiologist in the same group. While one might have some concerns, reasonably, that there would be a conflict of interest I doubt this would actually be an issue. These are professionals and they do this sort of thing every day and it's just not a big deal.

My concern is that your second opinion is from a cardiologist. The basic question here is "is this a cardiac issue at all." If the operating assumption is that it is your heart, seeing another cardiologist does nothing to challenge this basic assumption.

Go see a pulmonologist for a second opinion, or a good general internist or someone other than a cardiologist. My "keyboard warrior" opinion is that it is not mitral valve prolapse at all that is giving you your symptoms. So really challenge whether or not it is the heart at all.

Good luck.

 

[athena53]

You’d mentioned possible pulmonary issues before and I did think about it. Two reasons I don’t think that’s it. First of all, I breathe deeply and easily. No change from how it was at 30, from what can tell. Second- I once participated in a study on mitral valve prolapse in seniors. They sent a tech to my house with a portable unit. (Hey, I got a gift card.). A few weeks later I got a large envelope with a letter signed by a doctor in the study telling me I had severe mitral valve prolapse and should see a doctor. Expert opinion from someone who had nothing to gain from an ongoing relationship.

Still, I appreciate input that makes me consider other factored.

 

[ivinsfan]

Thank you. As I noted, due to my own hangups I preferred to start with the same practice. It's better than letting my mental blocks keep me from getting a second opinion at all. I plan to ask Doc #2 what exactly he reviewed, with specifics. Has he checked the echos over time (7/2021, 1/2022, 2/2023, 1/2024)? What changes did he look for and what did he see/not see? What factors drove his recommendation, whatever that is?

If his answer is "I looked at Doc #1's notes and I agree with him"- yeah, I'd get a third opinion from a different practice even if I had to pay for it myself.

Mitral valves are an odd condition. IMHO after reading your comments since '21 you don't feel comfortable with the mindset behind saying lets wait until it gets worse before we fix it. MY DH was/is very active,didn't feel tired and we basically just accepted the get back to us if anything changes instructions. This was over 10 years ago. The end result is he has permanent afib. So he went from let's wait and see, to oh dear we better get that fixed pronto, no in between.



Do you know the most interesting detail about a MV repair is that on average the repair lasts around 10 years? But in fact due to DH being only 65 at his first surgery he was never offered a replacement instead of a repair. When his repair didn't do the job anymore the cardio doc casually mentioned that they expect 10+ years give or take on a repair. DH ended up on the short side of that timeline.



As to finding a cardio and or surgeon willing to repair or replace, that can be tricky. We had a good relationship with our cardio and when seeing the decreased function of DH first repair started debating the timeline for an actual replacement valve. The cardio wanted the older, in his mind better surgeon to do the procedure and with us in his office started making notes for charting. He literally wanted to get down on paper that this was a symptom based decision not just a I wanted it fixed decision. In fact he did some coaching, saying Doc surgeon isn't really keen on doing valves unless something is actually worsening.



So if you feel you want it fixed more on your timeline these are the questions you want to ask at your 2nd opinion. The tests are tests and the end result will be a surgery, it's the timing that can cause a difference of opinion. You are in a tricky spot but knowledge is power.

 

[athena53]

A HUGE thank you to the people who nudged me to get a second opinion. I saw another guy today- same practice but more interested in intervention. Since my main symptom is breathlessness on exertion he wants to do an exercise echocardiogram to see what happens with the valves when I'm active. If that confirms his suspicions he thinks I'm a candidate for valve repair- cutting a triangular slice from the valves which have grown too big and floppy, and sewing them back up. It will be open-heart surgery, unfortunately, but I would LOVE to feel better again.

When I mentioned my concern about this getting worse and developing symptoms that valve repair couldn't fix, he cheerfully rattled off a list including permanent lung damage and a-fib. Yeah, it's time.

So, the next stop is the echo- they'll call to schedule. I'm nervous but optimistic.

 

[Teacher Terry]

That’s good news because I know how active you are and not feeling good is terrible. A friend of mine just got a pacemaker at 89 and it’s changed her life for the better.

 

[ivinsfan]

Good on you, Athena...like I posted before, knowledge is power.