Severe Mitral Regurgitation - Understanding The Magnitude

Hi All,

this has been an emotional rollercoaster. Everyone here has been extremely helpful with everything,
thank everyone for any and all input and the excellent threads and wealth of information on this forum,
it's very much appreciated. With that said, I'm 48/M and was diagnosed with Afib about a year ago.
It appears I had Afib for quite a while but wasn't aware of the symptoms as unless I got severely worked up
or drank more than a couple of alcoholic drinks I didn't have any symptoms. If I had palpitations I didn't pay much
attention to them.

With that said, my Echo reflects mild mitral valve prolapse with moderate to severe Mitral Regurgitation,
an enlarged Left Atria at 6.5cm, mildly enlarged Left Ventricle, and my right atria, right ventricle and all
other valves are normal. My EF is 50%. The very perplexing aspect to all of this is 4 different Cardiologists/EP's
in the hospital consulted me and NONE of them mentioned a word about my mitral valve regurgitation. Interestingly
enough, only the Hospital PCP mentioned it off my echo but when I brought it to both the hospital Cardiologist and
hospital EP, they both shrugged it off and actually said just worry about the AFIB and an ablation. In my mind 4
cardiologists/EP's couldn't possible eliminate the Mitral Valve Regurgitation without mention if it were so significant.

Fast forward to the last month or so and all of the info and suggestions here on this forum. I posted briefly about
this before and there were differing opinions on the Mitral Valve, especially because over the last 6 months I cut alcohol
down 95%, have eaten clean, exercised more and lost about 50lbs. I also do not have Obstructive Sleep Apnea any
longer. Apparently I was barely over 5 on the AHI scale to begin with and now i'm between 2-3 so losing weight, eating
cleaner and moving more definitely helped. With all of this, however, I am still in AFIB and if I have gotten in Sinus Rhythm,

it isn't often as every time I check my Kardia or smartwatch i've only had it show sinus rhythm twice and I'm not completely
convinced it was true sinus rhythm on those 2 rare occasions. I am currently on the 5th of 14 days wearing a Zio Monitor
and hopefully that will help tell a lot more. With all of this said, thanks to everyone here I did consult with Dr. Natale about
a month ago. He reviewed a current ECHO from two months ago and he deemed my mitral regurgitation as Moderate to
Severe and suggested I get my Mitral Valve looked into deeper before considering an ablation. He said if it gets "SEVERE"
it could be very bad. It appears 40-50% of the blood is flowing "back" and it's an "eccentric" spray. I didn't necessarily feel
rushed on the video call but I definitely didn't have time to ask questions, Dr. Natale was clearly moving quickly and I could
tell he likely had many more patients to attend too. What I wanted to ask is what aspects would make mitral valve
regurgitation potentially fatal? I've read it can lead to heart failure but what signs PRIOR to heart failure can be assessed?
Anything from my ECHO, specifically? If I have to get a Mitral Valve Repair than that is what I will have to do, I just want
to know what specifically would be telling from my Echo that would make this more critical right now than not?

It's definitely very frustrating as being told by so many doctor's to focus on the lifestyle changes and potential ablation and
making so many changes only to be told it may be the Mitral Regurgitation now causing the AFIB is baffling. I can't
imagine how 4 different Cardiologists/EP's could miss this? Thank you very much in advance for any feedback and info
on this.



Edited 6 time(s). Last edit at 09/26/2023 02:20PM by cornerbax.

41M here...had my first Afib episode at 34 and at that time was also diagnosed with MVP. Fast forward to when I turned 38 and had MV repair surgery, together with Maze Procedure for Afib.

Valve was fixed perfectly, but still struggled with PACs so went for an ablation with Natale last month. Jury still out on whether it worked given I am still not out of the blanking period.

Did the MVP cause the Afib? Did the Afib cause the MVP? Are they independent from each other? No one knows and no one will ever know unfortunately.

Mine was moderate btw.

thanks for the response. You did MV repair and a Maze but still had AFIB after the Maze procedure which required
a further ablation? Any specifics on what the surgeon/doctor told you as to why that didn't correct the AFIB? Also,
what type of valve repair did you get done and any reason you didn't consider a minimally invasive robotic valve repair?

In my case the Mitral Valve wasn't mentioned by 4 total cardiologists/EP's which seems unreal. From what I understand,
the mitral valve regurg can exacerbate afib and vice-versa. At the immediate moment i'm looking into all options but would
very much like to know how bad Mitral Regurgitation has to be before heart failure occurs? This is what I can't seem to
find much on? Obviously, for heart failure to occur something drastic would have to happen I would think to other areas
of the heart, the question is which areas should be the biggest concern right now? My Ejection Fraction is 50%, so
low-normal and my Left Atria is enlarged at 6.5cm. From my understanding this is severely enlarged but areas specifically
would dictate a possible cardiac arrest/heart failure?



Edited 2 time(s). Last edit at 09/26/2023 05:42PM by cornerbax.

If your mitral valve is healthy, then all you have to worry about it s weakened left atrium quivering and trying to pump blood through the valve one way. If the valve is also compromised, now you have two defects that work against the desired full volume of the left ventricle. That's a severe deficit. One or the other needs to be addressed, and I think one or the other could be done in any sequence that meets everyone's timetables. You're not in any immediate threat, especially because the horse is already out of the corral; your left sides are already enlarged a fair bit. I can't disagree with the vaunted Dr. Natale, but my own experience with AF would have me pleading to have that fixed first. But, I didn't have a poor ejection fraction from a disorder MV either.

You have to stay on the positive side of your developing relationships with these experts. Natale wants you to address the other problem first, so why not do that?

I am taking Dr. Natale's advice, that's why I essentially TOLD my current Cardiologist to do another echo and see what
they thought on the Mitral Valve since the 4 Hospital Cardiologists completely dismissed it. From my understanding,
if the Afib were corrected it's possible the Mitral Valve would work less hard and the moderate to severe regurg could
become mild to moderate, but Dr. Natale doesn't seem to think that would be as likely which is why he suggested I
get a current echo and have the Mitral Valve as a primary focus. My current cardiologist has 3D echo equipment and
apparently got a good enough look at my Mitral Valve that they don't think I'd need a TEE. They said my Mitral Valve
leaflets don't close tightly causing a 40-50% regurg.

I've read that Severe Mitral Regurg can cause Cardiac Arrest but I'd imagine there are some tell-tale aspects of an Echo
that would determine how badly the heart is damaged currently to determine that? My left Ventricle is mildly enlarged and
I obviously don't want it to become more enlarged, with the 50% EF, does it appear there's anything that could cause
Cardiac Arrest at the present time?



Edited 1 time(s). Last edit at 09/26/2023 06:25PM by cornerbax.

Quote
cornerbax
I am taking Dr. Natale's advice, that's why I essentially TOLD my current Cardiologist to do another echo and see what
they thought on the Mitral Valve since the 4 Hospital Cardiologists completely dismissed it. From my understanding,
if the Afib were corrected it's possible the Mitral Valve would work less hard and the moderate to severe regurg could
become mild to moderate, but Dr. Natale doesn't seem to think that would be as likely which is why he suggested I
get a current echo and have the Mitral Valve as a primary focus. My current cardiologist has 3D echo equipment and
apparently got a good enough look at my Mitral Valve that they don't think I'd need a TEE. They said my Mitral Valve
leaflets don't close tightly causing a 40-50% regurg.

I've read that Severe Mitral Regurg can cause Cardiac Arrest but I'd imagine there are some tell-tale aspects of an Echo
that would determine how badly the heart is damaged currently to determine that? My left Ventricle is mildly enlarged and
I obviously don't want it to become more enlarged, with the 50% EF, does it appear there's anything that could cause
Cardiac Arrest at the present time?

I have a similar history. When Dr. Natale was evaluating me for an ablation he asked that I get an updated echo as he saw moderate mitral valve regurgitation on the echo from 2 years previous. The new one showed severe regurgitation and he said that I needed to get it repaired before having an ablation. I went to the Cedars Sinai valve clinic and they recommended a MitraClip which is minimally invasive and done transcatheter. There was an interventional cardiologist locally who was very experienced in placing MitraClips so I didn’t have to travel back to Los Angeles for the procedure—one night in the hospital and practically no recovery. I have had it for 4 years and has been working perfectly. Dr. Natale did do my ablation about a year ago, having warned me that it would be more complicated with my history of mitral valve problems, and that it was likely that it would take 2 ablations because of this.

He had to do an extensive ablation including isolating my LAA and 6 months later when he implanted a Watchman, he did a touchup ablation as well. So far so good. From the reading I have done, it seems to work both ways – the regurgitation seems to make Afib worse and Afib seems to aggravate the mitral valve. There is definitely an association even though it may not be totally clear how it works. Note, I had had a mitral valve prolapse for many decades but with only mild regurgitation. It became severe after many years but, as the change was slow, I didn’t notice it. Looking back, I may have had the odd a Afib episode over the years but it was not diagnosed for decades. As far as heart failure, why chance the worsening of the regurgitation? I don’t see any argument against getting it repaired sooner rather than later as it is not your friend once it becomes severe.

Quote
cornerbax
thanks for the response. You did MV repair and a Maze but still had AFIB after the Maze procedure which required
a further ablation? Any specifics on what the surgeon/doctor told you as to why that didn't correct the AFIB? Also,
what type of valve repair did you get done and any reason you didn't consider a minimally invasive robotic valve repair?

In my case the Mitral Valve wasn't mentioned by 4 total cardiologists/EP's which seems unreal. From what I understand,
the mitral valve regurg can exacerbate afib and vice-versa. At the immediate moment i'm looking into all options but would
very much like to know how bad Mitral Regurgitation has to be before heart failure occurs? This is what I can't seem to
find much on? Obviously, for heart failure to occur something drastic would have to happen I would think to other areas
of the heart, the question is which areas should be the biggest concern right now? My Ejection Fraction is 50%, so
low-normal and my Left Atria is enlarged at 6.5cm. From my understanding this is severely enlarged but areas specifically
would dictate a possible cardiac arrest/heart failure?

I did minimally invasive valve repair, non-robotic, cause one of the experts in repair here in South Florida (Joseph Lamelas) simply does not use robotic. All I really cared about was that it was a repair and not a replacement, that it was minimally invasive, and with an expert in the field. Whether it's robotic or not that's more of the surgeon's preference.

Why the maze procedure didn't work? Well, technically it did work cause it got rid of Afib, but....I was left with tons of PACs/palpitations that are annoying as hell, even though they occur at a very normal HR. But it appears that that's a common issue after ablation and PACs appear more difficult to ablate for EPs. Let's see if Natale did it, but so far I am still experiencing lots of them. If he can't get rid of them, then not sure who can lol. I am willing to go back to him a 2nd time (which would be my 3rd attempt counting Maze), but after that I am done, I guess I would have to be on meds for life and call it a day.

It's very frustrating....long journey for sure.

@Susan,

thank you again for your excellent info. From what I was told, because i'm 48 and have no other health issues
and bloodwork/labs came back pretty flawlessly, the MitraClip wouldn't be something most doctor's would consider.
You said you got your MitraClip at Cedars? Who was the doctor that did the surgery? I agree with you on getting
the valve repair done, so it looks like that will be my primary area of focus first. I agree with you and you are right.


@whyme,

I'm sorry to hear you are still having palpitations but from what i've read here many people often times need a "touch up"
Ablation after an initial ablation and that may be the case for you. You are still in that blanking period so it's possible your
heart will correct and hopefully the palpitations will minimize or go away completely. I am curious if you did a minimally
invasive valve repair, isn't a Maze procedure essentially full, open heart surgery or is there some type of Maze procedure
that is also minimally invasive?

Quote
cornerbax
@Susan,

thank you again for your excellent info. From what I was told, because i'm 48 and have no other health issues
and bloodwork/labs came back pretty flawlessly, the MitraClip wouldn't be something most doctor's would consider.
You said you got your MitraClip at Cedars? Who was the doctor that did the surgery? I agree with you on getting
the valve repair done, so it looks like that will be my primary area of focus first. I agree with you and you are right.


@whyme,

I'm sorry to hear you are still having palpitations but from what i've read here many people often times need a "touch up"
Ablation after an initial ablation and that may be the case for you. You are still in that blanking period so it's possible your
heart will correct and hopefully the palpitations will minimize or go away completely. I am curious if you did a minimally
invasive valve repair, isn't a Maze procedure essentially full, open heart surgery or is there some type of Maze procedure
that is also minimally invasive?

Thanks for the encouraging words. Just looked at my post surgery notes...all it says is that it was a Maze procedure using cryo energy. It also says they closed my atrial appendage (to prevent strokes from Afib).

Quote
Cornerbax
thank you again for your excellent info. From what I was told, because i'm 48 and have no other health issues
and bloodwork/labs came back pretty flawlessly, the MitraClip wouldn't be something most doctor's would consider.
You said you got your MitraClip at Cedars? Who was the doctor that did the surgery? I agree with you on getting
the valve repair done, so it looks like that will be my primary area of focus first. I agree with you and you are right.

I saw Dr. Alfredo Trento at Cedars Sinai who was head of cardio-thoracic surgery at that time. He was evaluating me for minimally invasive valve repair though he decided that the MitraClip was a better option for me. I actually had the procedure done locally though as there was a local interventional cardiologist with a lot of experience with MitraClips and it was much easier not to have to travel back to Los Angeles. They have now expanded the recommendations for the MitraClip as it has proved so successful. It is certainly a whole lot easier than an actual surgical procedure. The main criteria is that your particular valve problem fits with the MitraClip, though earlier they only prescribed them for patients who were older or otherwise less likely to do well with a more invasive approach.

I saw dr Janet Wei at Cedar Sinai who was treating my mitral valve for the past 8 years. She is excellent and spends each visit over an hour talking and examining and she won’t leave until I had my answers completed

@ Daisy,

I am very glad your surgery and repair went flawlessly! When you say that my main criteria fits the MitraClip,
which main criteria are you referring too? My current Cedars Cardiologist stated they don't believe a MitraClip
would be the best option for me because of my Age at 48 and because fortunately, other than the Mitral Valve
prolapse and Regurg, I have absolutely no other health issues or conditions. My bloodwork came back nearly
flawless, with the exception of a slightly high LDL. My A1C came back at 5.0 and all other blood work and labs
came back excellent. My Echo shows all aspects of my heart in great condition, including the 3 other valves.

The only issues are the Mitral Valve Prolapse and level of Regurgitation. With all of this, my current Cardiologist
said he doesn't think a doctor would want to use a mitraclip, and instead would opt for a full repair. What are your
thoughts on this?

@susan.d,

thank you. Janet Wei has exceptional reviews and that is one thing i've noticed with many of these doctors I
initially dealt with in the hospital, and one outside, many of them almost seem to busy or even bothered to
answer questions. What is even more outrageous is I am COMPLETELY RESPECTFUL of other people's time,
whether it's a doctor a plumber an electrician, whatever. I understand I am not the only person in the world and
I'm not going to take someone's time up completely, but there is a fine line between taking up too much of someone's
time and getting answers to extremely important questions. In this case, being my Heart, these are the MOST IMPORTANT
questions i've had so as soon as I see a Doctor is perturbed by answering questions, I am done. There won't be a second
appointment, and they can treat someone else like a number but it won't be me.

With that said, did you end up getting any surgery for your Mitral Valve issue?

Quote
cornerbax
When you say that my main criteria fits the MitraClip,
which main criteria are you referring too? My current Cedars Cardiologist stated they don't believe a MitraClip
would be the best option for me because of my Age at 48 and because fortunately, other than the Mitral Valve
prolapse and Regurg, I have absolutely no other health issues or conditions.

As I understand it, the MitraClip is only appropriate for certain types of mitral valve prolapse. I fit the criteria but I don’t understand exactly what the criteria are. I believe they are doing a trial now comparing the efficacy and safety of the MitraClip with more traditional open-heart approaches to repair and it will be interesting to learn the results. Yes, It looks like you don’t qualify for the MitraClip at this point, so best wishes for the more traditional minimally invasive surgical repair.

P.S. I just had an appointment with my cardiologist and asked some more MitraClip questions. He said that it is definitely a two-way street between Afib and mitral valve regurgitation and that they are moving toward the understanding that the valve should be repaired sooner rather than later to avoid more complications. He also said that for one particular type of regurgitation, the MitraClip was actually better but that they are still studying which is better (MitraClip or surgical) for other types, though they are expanding the criteria for the Clip. He was very pleased at how well mine is working and showed me my latest echo which had virtually no regurgitation. Good luck!