Possible Mitral Valve Surgery Needed?

[Wahoo Master]

After reading some great posts here I decided to join this incredible group.

I am 59 approaching 60 in a few months and feel great, very active individual but have somewhat elevated BP. I scuba dive, snorkel, spearfish, weight lift, etc. My blood work shows cholesterol levels in normal range and I consider myself to have no obvious symptoms of any issues relating to my heart. I was diagnosed with a slight heart murmur via stethoscope last October which led to my first ever meeting with a cardiologist mid-November. He also heard it and scheduled my first ECHO first week December and a week later my wife and I met with him to discuss where he mentioned I have a slightly enlarged heart at 170 cm and apparently have a decent mitral valve leak along with thickened walls and a few gaps when the valve closes which could all be repaired via surgery which he felt was most likely necessary. He did add if the heart was not enlarged then we could probably just monitor the situation. We both were extremely concerned to hear this and the next step was to perform the TEE procedure which was done early January. When I woke he mentioned the leak seemed to be on the severe side and described the surgery a bit more detail where a "ring" would be installed and the valve leaflets tightened up as they sort of have a cleft chin on them meaning they are not tight when they close. I asked him after the TEE what if we to a wait and see and he basically said at some point heart failure will occur but of course no one knows when. Ugh! Well next step I would hear from the surgical team to schedule a catheter procedure for my arteries to insure there is no blockage and that was done last Thursday 1/25. Catheter procedure was fine and thankfully no blockage. Now up until yesterday I had no technical data from the echo or catheter but we had our 3 month followup exam with our GP and she quickly read some notes from the TEE procedure and told me my EF is 57%. And that is really all the technical data I have so far, no other measurements or data received yet from the cardiologist.

I also brought up somewhat interesting fact at yesterday's GP meeting that my patient app shows a section called PROBLEMS and the following items were noted 12/15/23 which was the day we met with the cardiologist:
Dilated cardiomyoapthy
Mitral valve disorder
Essential hypertension
Then the following item was added on1/16/24:
Mild mitral regurgitation
I wonder if the surgical team reviewed everything and added that statement for the records? This would obviously not agree with the dr assessment after my TEE. My GP did not know and was not able to retrieve some of the records, all she saw was the comment after the TEE about severe leakage.

Next meeting is this Friday morning where am sure we will discuss the catheter results and possible surgery and maybe I will get some actual data which really kinda bothers me that I have no information except his opinion. No matter what we will get a second opinion but really curious what you experts think about this. I feel fine and frankly am dreading the potential what if scenarios with this type of surgery and recovery, I have read some horror stories online. I have had multiple operations but nothing hear related.

Thanks for reading and God Bless You All!

 

[pellicle]

Good morning and welcome

this is not my area of strength, but it would seem to me that what they are talking about is a mitral clip.

However enlarged heart is not a good thing and its not a good idea to defer these things when they're ripe. I've only got personal experience with Aortic valve and there are some others here with Mitral valve experience who will speak much more to that I'm sure.

Returning to "enlagement" the heart is a muscle but its not like other muscles in that "growing bigger" is a bad thing. Its a bad thing also even when it "recovers" because that growth causes stretching of the nerves which fire and coordinate the heart. Enlargement is and of itself a predictor of bad things to come. Don't let it get more enlarged

https://www.ncbi.nlm.nih.gov/pmc/ar...um (LA,fibrillation9 and multiple morbidities

An enlarged left atrium (LA) is a predictor of stroke,8 post-operative atrial fibrillation9 and multiple morbidities.​

yes, I realise you do not have coronary artery disease (a good thing) but what that speaks to is the left atrium enlargement, not just coronary artery issues. There are many more and I encourage you to read and understand that part of the article and direct your reading in that area. Then go back to your team and ask about that.

Its not like a car, when leaving it till its bad costs the same to fix (mostly).

Best Wishes

 

[3mm]

maybe I will get some actual data

I'm sorry to hear about your condition, but you can deal with this! You are basically very healthy, and that translates to good recover from valve surgery.

Valve surgery is very common, and healthy people like you recovery well. You have the right to all of your medical records, so ask for copies of whatever you want. Personally, I have found it best to use the electronic copies from my hospital's website. I do copy many of these reports to my own computer for convenience.

 

[Chuck C]

Welcome to the forum.

He did add if the heart was not enlarged then we could probably just monitor the situation

the leak seemed to be on the severe side

I asked him after the TEE what if we to a wait and see and he basically said at some point heart failure

It would appear that he is giving you good guidance. My experience is with aortic stenosis, but I believe that there is a lot of crossover, in that when the condition gets severe, and the heart has enlarged to compensate, it is generally time to get on with surgery to avoid permanent heart damage. Wait and watch might sound more comfortable, but often it just amounts to kicking the can down the road with considerable risk in doing so.

maybe I will get some actual data which really kinda bothers me that I have no information except his opinion

Legally, you have a right to all of your medical records. You might have to press the issue, but keep pressing. They are obligated to give you your medical reports if you request them.

No matter what we will get a second opinion

That is almost always a good idea.

Best of luck and please keep us posted.

 

[pellicle]

@Wahoo Master
with respect to this response to your conjecture of a second opinion

That is almost always a good idea.

even if it is only to doubly confirm to you that the guy you spoke with is on the ball (and from what you wrote it sure seems that way to me).

Best Wishes

 

[Zoltania]

When I woke he mentioned the leak seemed to be on the severe side and described the surgery a bit more detail where a "ring" would be installed and the valve leaflets tightened up as they sort of have a cleft chin on them meaning they are not tight when they close.

That sounds like the standard procedure for mitral valve repair. The ring is called an annuloplasty ring. Sometimes they replace the "chords" as well; those anchor the valve leaflets in place.

The main question about whether someone needs mitral valve repair surgery is whether the regurgitation is severe. If it's only mild, you probably don't need the surgery yet unless there are other issues too. If it's severe, then it's probably time to start planning for surgery.

Mitral valve repair surgery is great because it's usually a complete fix. The reoperation rate is very low.

 

[Wahoo Master]

Thanks for all of the feedback. I am trying to get a grip on everything and frankly it is very challenging as I will repeat - I feel fine.

Now how long I will feel like this is anyone's guess, frankly that is why I am weighing everything and trying to understand all of this stuff. I know from reading that plenty of people have had success with the surgery and of course plenty have not, most all in good shape and near my age from what I read. So this could either extend my life, with hopefully no permanent issues, put me in a coma, kill me or I survive with some sort of paralysis or stroke issues, who knows. Risks vs benefits scenario which we all need to face, understand and decide upon.

Supposedly the procedure is some sort of minimally invasive approach with a 4-5 inch incision under my right arm and ultimately stop my heart and rig me up to the hear/lung machine and install the "ring" and fix the MV leaflets a bit. I do not believe the MitraClip is involved but will find out when we next meet Friday morning.

So of course the potential pitfalls along the way just sends chills up my spine. Long term survival what 10 years? 20 years or more? No one can tell me with any truth if I don't get it how long will it take until symptoms begin or how quick they will advance. I guess that is where I am at with this. I honestly feel like if I do it I may not be the same person assuming I wake up, that will absolutely floor me if it happens.

Anyway, thanks again for your insights, you guys/gals are great. Kudos to you all for taking care of yourselves and I sincerely hope I get to that point or just accept it is what it is and continue to live the great life that I have and not worry about anything...until the symptoms start and then take action, assuming that I can.

 

[pellicle]

Hi

I am trying to get a grip on everything and frankly it is very challenging as I will repeat

it takes time, don't rush it ...

No one can tell me with any truth if I don't get it

I'm not sure anyone is lying to you, but without more data its hard to narrow down how long something is. Its like how long is the flight from Brisbane to Helsinki? Well it depends on some variables which we just don't know yet. Professionals in health care can give a range but to narrow that range takes more information.

Best Wishes

 

[Gail in Ca]

I had my mitral valve repaired in 09 during a long surgery after endocarditis was treated. This was at Stanford with a world renown surgeon. I thought that repair was a done deal, but turns out that repair sometimes fails as it has in my case.
I’m now looking at replacing robotically through the ribs on the right, or just going through the groin and placing a valve inside my done for mitral and anulplasty ring. I’m plenty nervous about either one not lasting me since I might live to be an old lady. I’m still gathering info and need to see both doctors with questions about each. Just be aware that repair can fail.

 

[V__]

Welcome to the forum @Wahoo Master !

Now how long I will feel like this is anyone's guess,

If indeed you are at "severe" stage without the symptoms, then you may have a few years left, statistically speaking. However, the end of life would not be pretty, since you'd go through the cardiac failure phase. The transition can be sudden, and nobody will predict when it happens for you.

The timing of the surgery is well studied. The guidance is basically to catch the cases before irreversible heart damage happens. If it does, the prognosis would be worse - your remaining lifetime will be reduced in that case.

In the past, the referrals to the surgery were done later. But then they figured out the outcome is better when the surgery is done earlier.

I know from reading that plenty of people have had success with the surgery

The successful repair chances should be well above 90%. You can check with the surgeons opinion and their past success rate (that would be very useful to do anyway).

The backup option, if the repair doesn't workout, is the valve prosthesis (replacement). The surgeons check on how well the repair looks at the end, and can resort to the replacement as the backup. The replacement is simpler for them.

and of course plenty have not,

The nominal mortality rate for MVr is about 1%. To me, it's shockingly small. It's the results of many improvements in the surgery and post-surgical care/monitoring, over many decades. (This rate is defined as a 30-day thing, not on-the-table thing.) Also:

• If you really are in a good physical shape, without major chronic issues, then your chances should be better. An average patient has ~50% chance of another significant condition, which lowers the outcome. (As an example, my risk for repair was estimated as 0.2%.)
• Before you obsess with these very small numbers, I should say that there are many other factors in life in the same ball park of risk level. Driving a car is one such example.
• If you do want to do the risk management thing, then IMO you should recognize that a month-long delay in the surgery would imply a similar risk as the actual surgery.

install the "ring" and fix the MV leaflets a bit. I do not believe the MitraClip is involved

It's the annuloplasty ring (or band), as @Zoltania mentioned. This was one of 2 improvements that happened in the 90's. I believe it's very standard now.

As I understand, if you heart is enlarged, for whatever reason, that can mess up the alignment of the leaflets. If they don't close well, that in turn leads to the heart enlargement, which makes them close even less well. So it's a dangerous run-away condition. (Until the heart just gives up in this race.) The ring stabilizes the dimensions of the mitral valve, which helps the long-term outcome of the repair.

Long term survival what 10 years? 20 years or more?

From the papers I've seen, statistically, you'd have the same longevity post-surgery as a general population.

...until the symptoms start and then take action, assuming that I can.

I really think you should not wait, but it's your choice. However, I can tell you "my story":

• I had "regurgitation" diagnosis for over 12 years, that was slowly progressing.
• No symptoms when my cardiologist said I needed the surgery. (Well, so I thought...)
• In the surgeon's office a PA working with him made a point of asking my wife. Who thought I had a "slow-down" for about 3 years prior. The PA explained that this happens often. The patients are frequently unaware of the subtle changes, but the family members can see them better.
• There was a pronounced and progressive stamina decrease for about 2 months that started soon after the visit with cardiologist. I think she caught it just in time.

I thought that repair was a done deal, but turns out that repair sometimes fails as it has in my case.

FWIW, my surgeon was very direct. He stated that he fixed the MV structure, but not the underlying disease. So the repair should be durable, but about 30% of the patients will still see some progression of the regurgitation over time. It's usually at a relatively benign level still. However, about 10% of the patients will need re-operation. I appreciated the straight talk.

 

[Woodcutter]

As others have said, what the doctors (and hopefully you!) want to do is catch and address the problem before it worsens to the point where consequences are permanent and/or very severe.

Here is the Mitral Regurgitation table from the 2020 Guideline for the Management of Patients with Valvular Heart Disease. Take a look at the many factors that are considered and the * note right at the bottom. Not everybody has everything. There are a myriad of factors that may need to be considered to come to the categorization conclusion (which in turn leads to the recommended pathforward).

Also keep in mind that, as good as the technology is, the measurements all have some error band to them. It's not like taking a tape measure, or calipers, or micrometer to measure valve area like you might with something you hold in your hand. They are doing things like sending soundwaves through your body and measuring how long it takes to bounce off of something . . . and then calculating those things that show up as hard numbers on your report. My point is that all of those "hard numbers" . .. really have some 'softness' to them and the talent of the experts in interpreting that data is important.

Just a couple more points (for now ):

I had a minimally invasive mitral valve repair followed by a standard open heart mitral valve replacement (about 6 mos later due to a problem). I was 50 at the time and while the minimally invasive was slightly easier on me, it was not by much.

The primary advantage of a repair (over a replacement) is that the structure that operates the native valve remains. The mitral valve is normally opened by muscle in the wall of the heart contracting and pulling on chords which literally open the valve leaflets. The various repair approaches maintain this functionality. When a prosthetic valve replaces the native valve, those chords are removed and valve function is accomplished by hydraulics (pressure/flow inside the heart).

 

[Wahoo Master]

I had my mitral valve repaired in 09 during a long surgery after endocarditis was treated. This was at Stanford with a world renown surgeon. I thought that repair was a done deal, but turns out that repair sometimes fails as it has in my case.
I’m now looking at replacing robotically through the ribs on the right, or just going through the groin and placing a valve inside my done for mitral and anulplasty ring. I’m plenty nervous about either one not lasting me since I might live to be an old lady. I’m still gathering info and need to see both doctors with questions about each. Just be aware that repair can fail.

UGH....so sorry to hear this and the first I have ever heard of this happening. Pretty much thought the ring thing lasts a lifetime but obviously not. I have not yet met the surgeon but my cardio guy did mention the surgery is catheter based and the incision is under the arm pulling the ribs back but not breaking them, not sure if any robotics are involved. Thanks for mentioning your story and truly wish the best of luck to you.

 

[Wahoo Master]

Welcome to the forum @Wahoo Master !


If indeed you are at "severe" stage without the symptoms, then you may have a few years left, statistically speaking. However, the end of life would not be pretty, since you'd go through the cardiac failure phase. The transition can be sudden, and nobody will predict when it happens for you.

The timing of the surgery is well studied. The guidance is basically to catch the cases before irreversible heart damage happens. If it does, the prognosis would be worse - your remaining lifetime will be reduced in that case.

In the past, the referrals to the surgery were done later. But then they figured out the outcome is better when the surgery is done earlier.


The successful repair chances should be well above 90%. You can check with the surgeons opinion and their past success rate (that would be very useful to do anyway).

The backup option, if the repair doesn't workout, is the valve prosthesis (replacement). The surgeons check on how well the repair looks at the end, and can resort to the replacement as the backup. The replacement is simpler for them.


The nominal mortality rate for MVr is about 1%. To me, it's shockingly small. It's the results of many improvements in the surgery and post-surgical care/monitoring, over many decades. (This rate is defined as a 30-day thing, not on-the-table thing.) Also:

• If you really are in a good physical shape, without major chronic issues, then your chances should be better. An average patient has ~50% chance of another significant condition, which lowers the outcome. (As an example, my risk for repair was estimated as 0.2%.)
• Before you obsess with these very small numbers, I should say that there are many other factors in life in the same ball park of risk level. Driving a car is one such example.
• If you do want to do the risk management thing, then IMO you should recognize that a month-long delay in the surgery would imply a similar risk as the actual surgery.

It's the annuloplasty ring (or band), as @Zoltania mentioned. This was one of 2 improvements that happened in the 90's. I believe it's very standard now.

As I understand, if you heart is enlarged, for whatever reason, that can mess up the alignment of the leaflets. If they don't close well, that in turn leads to the heart enlargement, which makes them close even less well. So it's a dangerous run-away condition. (Until the heart just gives up in this race.) The ring stabilizes the dimensions of the mitral valve, which helps the long-term outcome of the repair.



From the papers I've seen, statistically, you'd have the same longevity post-surgery as a general population.


I really think you should not wait, but it's your choice. However, I can tell you "my story":

• I had "regurgitation" diagnosis for over 12 years, that was slowly progressing.
• No symptoms when my cardiologist said I needed the surgery. (Well, so I thought...)
• In the surgeon's office a PA working with him made a point of asking my wife. Who thought I had a "slow-down" for about 3 years prior. The PA explained that this happens often. The patients are frequently unaware of the subtle changes, but the family members can see them better.
• There was a pronounced and progressive stamina decrease for about 2 months that started soon after the visit with cardiologist. I think she caught it just in time.

FWIW, my surgeon was very direct. He stated that he fixed the MV structure, but not the underlying disease. So the repair should be durable, but about 30% of the patients will still see some progression of the regurgitation over time. It's usually at a relatively benign level still. However, about 10% of the patients will need re-operation. I appreciated the straight talk.

Great reply! You really spelled out quite a bit and making me think deeply, thanks. So it does sound like they just got you done at the last minute, crazy. Yeah, I feel great and do quite a bit but like everyone who has this it will go downhill at some point but who knows when

 

[Wahoo Master]

As others have said, what the doctors (and hopefully you!) want to do is catch and address the problem before it worsens to the point where consequences are permanent and/or very severe.

Here is the Mitral Regurgitation table from the 2020 Guideline for the Management of Patients with Valvular Heart Disease. Take a look at the many factors that are considered and the * note right at the bottom. Not everybody has everything. There are a myriad of factors that may need to be considered to come to the categorization conclusion (which in turn leads to the recommended pathforward).


View attachment 889863

Also keep in mind that, as good as the technology is, the measurements all have some error band to them. It's not like taking a tape measure, or calipers, or micrometer to measure valve area like you might with something you hold in your hand. They are doing things like sending soundwaves through your body and measuring how long it takes to bounce off of something . . . and then calculating those things that show up as hard numbers on your report. My point is that all of those "hard numbers" . .. really have some 'softness' to them and the talent of the experts in interpreting that data is important.

Just a couple more points (for now ):

I had a minimally invasive mitral valve repair followed by a standard open heart mitral valve replacement (about 6 mos later due to a problem). I was 50 at the time and while the minimally invasive was slightly easier on me, it was not by much.

The primary advantage of a repair (over a replacement) is that the structure that operates the native valve remains. The mitral valve is normally opened by muscle in the wall of the heart contracting and pulling on chords which literally open the valve leaflets. The various repair approaches maintain this functionality. When a prosthetic valve replaces the native valve, those chords are removed and valve function is accomplished by hydraulics (pressure/flow inside the heart).

 

[Wahoo Master]

Very informative, thanks so much Woodcutter. Lots to get into and consider.

 

[dornole]

Sorry to hear about the mitral problems. I have both mitral stenosis and regurgitation due to rheumatic issues and had a repair in 2002 that has worked fine so far. In my case at least, they do not want to see any enlargement of the left ventricle - symptomatic or not, that's when they want to pull the trigger and intervene. If you let that go too long, you get irreversible damage. One of my husband's colleague died from that at age 62 (did not follow up with her annual echos because she felt fine, by the time she got symptoms there was nothing they could do).

It's weird that it says mild regurgitation - did you see the cardiologist this AM, or your GP? What did they say?

Regardless -- you have an fantastic option for surgery to correct this. You feel fine and fundamentally you ARE fine and will be fine, as far anyone can predict in this no-guarantees world. You just need a little maintenance and repair.

Hope your visit went well and provided clarity.

 

[Wahoo Master]

Wow, that is great to hear about your success so far, truly awesome. Thanks for your insight and commentary, great stuff.

I was aware that I had an enlarged heart from a regular physical about 22 years ago but this was just a comment from my dr at that time, there was no big concern raised by him about this. So this was my first experience with a cardio the last few months and after the echo he confirmed I do have an enlarged LV. As he said if I did not have this we probably would just monitor the situation each year. And from what I have read at some point if the enlargement continues yes there will be some very serious problems. And to add that is a serious sad read about the passing of the colleague, it does add to the discussion to attempt to take care of the situation sooner than later.

So unfortunately there was a mix up with the surgical dr, we never heard from the surgical group except to schedule the catheterization procedure. We arrived yesterday meeting with our cardio dr and he asked if we met with the surgical dr and of course we had not. He called them to follow up. He then listened with the stethoscope and confirmed he could still hear the murmur and all was good with my lungs, basic stuff. I did not get into the mild vs severe discussion as I did read the echo results which showed his comment that it was severe, I will bring this up to the surgeon. Thankfully the nurse in the office was able to upload all data from the echo and catheter procedure so I have some numbers now. And on our way out we received a call for the surgeon office and scheduled a meeting with them in about 10 days.

Plan on enjoying this weekend spending some time on the boat and under the water.

All the best to everyone!

 

[V__]

my cardio guy did mention the surgery is catheter based and the incision is under the arm pulling the ribs back but not breaking them, not sure if any robotics are involved.

The aspect of "pulling the ribs back" resembles a "minimally invasive" method of surgery. Which would be a real surgery, just not the frequent "sternotomy" way, when they cut the breastbone. The minimally invasive method may or may not be robotically assisted. As long as the surgeon has sufficient experience with it, it should work well. (The techniques are different from the sternotomy-based access.)

The catheter might be something else... perhaps a pre-op check of the heart arteries?

 

[V__]

Hi @Woodcutter ,

Thanks for the great post! Just a couple of comments.

The primary advantage of a repair (over a replacement) is that the structure that operates the native valve remains.

I understood that, from risk-reward perspective the valve implantation has a bit more risk and a bit worse outcome. It's not bad at all, it's just that statistically they go to percentile level of comparisons. Therefor the general preference for repair over replacement in the end.

As @pellicle would point out, the outcome is compliance-dependent. So if one actually follows the recommendation, then such things as longevity should probably be pretty much the same as for the general population.

When a prosthetic valve replaces the native valve, those chords are removed and valve function is accomplished by hydraulics (pressure/flow inside the heart).

From the literature, there is a (possibly recent?) trend to keep the chords and the corresponding muscle in. Since, as you say, the valve operated with hydraulics, I had to ask about where the cords go to The answer was that they get re-attached to the rim of the valve. So I guess they don't affect the valve operation much, but the structure of the ventricle is preserved better by keeping them in.

 

[pellicle]

the outcome is compliance-dependent

I wonder if you're presupposing a valve replacement with a mechanical valve here and meaning compliance to ACT long term?

If so that's on the decline AFAIK, for instance:
https://pubmed.ncbi.nlm.nih.gov/33870704/

...for MVR, mechanical prosthesis use decreased from 59.5% in 2008 to 29.2% in 2017 (P for trend<0.001). In multilogistic regression analyses, female sex, prior sternotomy, prior defibrillator, and South/West geographic location were predictive of mechanical valve use​