Deciding whether to have Mitral Valve Repair/Replacement Surgery

[Josh48]

Hello,

I just joined here to share my story and get some feedback, encouragement, etc...

I'm 48yrs old, very healthy and active otherwise but was diagnosed about two years ago with Mitral Valve Prolapse which upon closer examination, including an Angiogram, determined that there was moderate to severe regurgitation due to prolapse of A2 scallop and P2 scallop. The Angio also concluded that I have normal coronaries and normal LV function and EDP with an EF of 65%. Left atrium was dilated.

My ECG showed T wave inversion in lead III and slight T wave inversion in aVF.

There is a grade 3/6 pan systolic murmur at the apex radiating to the left sternal border.

(personally I'm not sure what a lot of this means but perhaps people here might?)

I rarely experience symptoms although when lying down my breath sometimes becomes shorter and I may have more fatigue than I otherwise would at times. I can sometimes feel discomfort near my heart but it is mild and resembles heartburn.

Generally speaking I feel good but at the same time I've read that it is better to repair this now before more serious symptoms arise and the heart may become damaged (enlarged).

Aoritc valve is healthy and normal.

If you were in my shoes would you risk the surgery or live with the condition and monitor it year to year?

(I fully realize that it is my decision but I'm curious as to your thoughts)

Thank you so much in advance.

 

[dick0236]

If you were in my shoes would you risk the surgery or live with the condition and monitor it year to year?

(I fully realize that it is my decision but I'm curious as to your thoughts)

I believe that most who have gone thru this surgery would agree that having the surgery "a little too soon" is better than "a little too late".......the trick is to figure out THAT. The surgery is not, normally, that big of a deal anymore. I guess when one cardio says "it's time" I might want a second opinion.......if that opinion agrees with the first then the answer seems clear........if they disagree?? Heart issues do not go away on their own.....but they are very fixable if caught in time.

 

[nobog]

You should check with your Dr to see if you would be a candidate for:
MitraClip - Patient Site: Home

 

[pellicle]

Hi Josh and welcome aboard the good ship VR

I'm 48yrs old, very healthy and active otherwise but was diagnosed about two years ago with Mitral Valve Prolapse which upon closer examination, including an Angiogram, determined that there was moderate to severe regurgitation due to prolapse of A2 scallop and P2 scallop. The Angio also concluded that I have normal coronaries and normal LV function and EDP with an EF of 65%. Left atrium was dilated.

I'm not qualified to make any intelligent interpretation of that data, but I can say this: Basically the goal here is to make sure a surgery is required and to do a risk analysis on this.
The risks are

• that you have a surgery which may not be needed
• you become unhealthy as a result of not having the surgery
• should the surgery be conservative (such as the mitral clip mentioned above) or more aggressive such as a valve replacement

there is an older school of thinking where surgery was avoided until the risk of death from the condition itself exceeded the risk of death from the surgery. To my understanding this has now been superseded by the view that

• surgery now is much less risky than it was 20 years ago
• surgeons are now looking past 30 day survival after surgery and taking into account how well you recover and ongoing life after surgery

The data is showing that earlier surgery (before health declines far) gives better recoveries than waiting till "you're clearly dying from this" before doing it.

My own personal experience on "being asympotmatic" is that I didn't realise how much I was being held back until I got a new valve put in.

I recommend you discuss this perspective with your team and consider the options.

Best Wishes

 

[dornole]

Welcome! I had mitral repair at age 35, my case for stenosis and it was via balloon. It was a no brainer for me as my valve area was severe. It was revealed when I was pregnant with twins and the stress on my heart was increased. I had bad shortness of breath lying down to the extent I had to sleep in a chair and a persistent dry cough eventually coughing up bright red blood (both indications of congestive heart failure and pulmonary edema). Repair fixed it. I now have moderate or moderate-severe regurgitation with no obvious symptoms. When I get my annual echo and it comes up mod-severe, they order a TEE to get better data on whether it is time for surgery or not.

You definitely don’t want to wait too late and get enlargement of ventricles. My atrium is way enlarged and they don’t seem to care about that. Make sure you get an annual echo to monitor. To me your shortness of breath lying down is definitely a symptom to mention to your dr as this is a mitral symptom. The mitral clip seems like an awesome deal and I think it’s an applicable choice for your prolapse situation and can be quite a durable repair. My repair has lasted 18 years before the way. That said I’ve also stayed on the mod to mod severe regurgitation line all that time with no progression. I guess I’d say make sure you get yearly echoes and I’d go when the doc says it’s probably time. Just make sure you give them all the info on your symptoms.

 

[Josh48]

Thank you everyone for the heartfelt replies....tough decision but since this won't get better on its own and at some point I will need to have the valve repaired I'm leaning towards getting it done sooner than later. I'm a candidate for minimally invasive so that is a bonus...

Here's my angiogram results

 

[vitdoc]

There are at least three options for mitral valve issues depending on the details.
For regurge one can try to repair or replace or clip. Repair is nice since you are left with your own improved valve. Repair rates vary and repair durations vary so other procedures will be likely needed. Sometimes repair is attempted but converted to replacement. Both repair and replacement require open heart surgery in some form.
Mital clip is relatively new about 10+ years or so. It can be done through the groin and can be useful for some types of regurge. When it fails surgery is then needed.
Since I had three open hearts for aortic valve and finally aneurysm when I was facing mitral surgery due to sudden decompensation of long standing mitral insufficiency I checked out surgery vs the clip. Talked to a variety of surgeons from top places like Cleveland Clinic ,Mt.Sinai in New York and Cedars in LA.
Nobody was too excited to touch me. I may have screwed up their statistics.
So I opted for a clip procedure at Cedars. Almost 5 years into it now and it worked perfectly for me. And it was a piece of cake compared to open heart.
Home the next day.
So check out all the options and talk to people doing these things to make the best decision for yourself.

 

[pellicle]

Nobody was too excited to touch me. I may have screwed up their statistics.

I received this exact advice as a cautionary factor when choosing my 3rd AVR (with aneurysm repair as a side dish). It made selection of a mechanical a simple clear choice.

 

[Midpack]

Hi:

i am in a situation pretty similar to yours (52 yo, severe mitral valve regurgitation caused by a bileaflet prolapse, assymptomatic). I am being followed by echo every 6 month.

Timing is everything. You don’t want surgery too late, because your heart muscle damage may have reached a point where full recovery is not possible even after surgery correction, but you also don’t want surgery too soon (it is a major surgery after all, with a myriad of possible complications).

In the case of a mitral valve, a good repair is allways a much better option than a replacement. The likelihood of achieving a good repair is a very important aspect to consider (when both leaflets prolapse, as in your case, and mine too, the repair is a little more complicated compared with the case where only the posterior leaflet prolapses).

Allways look for AT LEAST 2 different opinions from renowned cardiologists (or cardiac surgeons, but keep in mind that surgeons usually prefer to operate).

You will be fine.

Regards.

 

[Josh48]

Hey thx so much your post is highly reassuring... Some small symptoms are arising so I've decided to go for the surgery and hope for a solid repair... Good luck with your condition as well my friend!

 

[Zoltania]

I was hoping to be able to avoid having mitral valve repair surgery, but my symptoms became unmistakable so the surgery was necessary. It took about six months for me to feel fully back to normal physically, and somewhat longer mentally and emotionally. Now, at five years out, I feel the same as I always have. If I didn't go looking for the scar once in a while, I wouldn't even know that I had had surgery, except that I'm healthy now. We MV repair patients are very lucky to (usually) not have to worry about long-term anticoagulation or reoperation.

My feeling about the leadup to heart surgery is that it's like knowing you have to drive your car over a mountain. You've never made this drive before, you're afraid your car won't make it over the summit, and you don't know the driving conditions -- could be a wide, dry, paved highway, could be a 2-lane road in a whiteout. What you do know is that many many people have made this drive successfully, that you have done everything possible to prepare, and that there are a bunch of friends hanging out in a diner at the foot of the mountain on the other side, waiting for you to join them to have a cup of coffee and share your story.

 

[Josh48]

I was hoping to be able to avoid having mitral valve repair surgery, but my symptoms became unmistakable so the surgery was necessary. It took about six months for me to feel fully back to normal physically, and somewhat longer mentally and emotionally. Now, at five years out, I feel the same as I always have. If I didn't go looking for the scar once in a while, I wouldn't even know that I had had surgery, except that I'm healthy now. We MV repair patients are very lucky to (usually) not have to worry about long-term anticoagulation or reoperation.

My feeling about the leadup to heart surgery is that it's like knowing you have to drive your car over a mountain. You've never made this drive before, you're afraid your car won't make it over the summit, and you don't know the driving conditions -- could be a wide, dry, paved highway, could be a 2-lane road in a whiteout. What you do know is that many many people have made this drive successfully, that you have done everything possible to prepare, and that there are a bunch of friends hanging out in a diner at the foot of the mountain on the other side, waiting for you to join them to have a cup of coffee and share your story.

six months to fully recover, wow...did you have minimally invasive? my doctor advised 4-6 weeks to feel recovered....but I'm sure it is highly individual.

 

[newarrior]

Hi:

i am in a situation pretty similar to yours (52 yo, severe mitral valve regurgitation caused by a bileaflet prolapse, assymptomatic). I am being followed by echo every 6 month.

Timing is everything. You don’t want surgery too late, because your heart muscle damage may have reached a point where full recovery is not possible even after surgery correction, but you also don’t want surgery too soon (it is a major surgery after all, with a myriad of possible complications).

In the case of a mitral valve, a good repair is allways a much better option than a replacement. The likelihood of achieving a good repair is a very important aspect to consider (when both leaflets prolapse, as in your case, and mine too, the repair is a little more complicated compared with the case where only the posterior leaflet prolapses).

Allways look for AT LEAST 2 different opinions from renowned cardiologists (or cardiac surgeons, but keep in mind that surgeons usually prefer to operate).

You will be fine.

Regards.

Did you do a through the leg repair ? Mitral clip ?

 

[Woodcutter]

Been thinking about sharing on this as I too was asymptomatic at 49 when my cardiologist (and subsequently also the surgeon recommended repair of my mitral valve (for regurgitation). But looking back and 'what iff'ing' . . . . I still always come back to confirming that proceeding was the correct choice for me. I am certain that delay would have caused further deterioration. Certainly not days but probably not years. So perhaps it could have waited 6 or 12 or 18 months. Once the echos are showing pressure gradient increases and wall thickening and ejection fraction decreases etc. I knew that delaying was not helping my heart and was increasingly likely going to cause damage. There is also an anxiety factor that can come into play.

 

[Zoltania]

six months to fully recover, wow...did you have minimally invasive? my doctor advised 4-6 weeks to feel recovered....but I'm sure it is highly individual.

I guess it depends on your definition of "fully recover." I was back to work and normal activities much sooner than six months, including playing clarinet and tuba and lifting weights at the gym. However, I didn't feel I had fully recovered until my energy level was completely back to normal and I wasn't worrying about every little heartbeat.

Yes, I had minimally invasive surgery, through ports inserted in a small incision in my right side. I think that kind of surgery is still hard on the body. I was on the bypass machine for almost three hours. I'm grateful that I didn't have to worry about bones knitting as part of my healing, though.

 

[Josh48]

I guess it depends on your definition of "fully recover." I was back to work and normal activities much sooner than six months, including playing clarinet and tuba and lifting weights at the gym. However, I didn't feel I had fully recovered until my energy level was completely back to normal and I wasn't worrying about every little heartbeat.

Yes, I had minimally invasive surgery, through ports inserted in a small incision in my right side. I think that kind of surgery is still hard on the body. I was on the bymachine for almost three hours. I'm grateful that I didn't have to worry about bones knitting as part of my healing, though.

Thank you for sharing that.

May I ask how you feel now? Are you the same as you were before or even better now that your valve is functioning properly?

 

[Josh48]

Been thinking about sharing on this as I too was asymptomatic at 49 when my cardiologist (and subsequently also the surgeon recommended repair of my mitral valve (for regurgitation). But looking back and 'what iff'ing' . . . . I still always come back to confirming that proceeding was the correct choice for me. I am certain that delay would have caused further deterioration. Certainly not days but probably not years. So perhaps it could have wa 6 or 12 or 18 months. Once the echos are showing pressure gradient increases and wall thickening and ejection fraction decreases etc. I knew that delaying was not helping my heart and was increasingly likely going to cause damage. There is also an anxiety factor that can come into play.

How do you feel now that's it is done? The same as before? Better?

 

[Midpack]

Did you do a through the leg repair ? Mitral clip ?

I did not have surgery yet. Mitra clip is not an option in my case because a good conventional repair can be achievable. Mitraclip, as i have been told by my cardiologist, is usually considered for those who are too risky for undergoing a traditional surgery. And it usually does not completely eliminate the regurgitation (it can reduce it from severe to moderate/slight, for instance). That said, Mitraclip is still a very good option, but for selected cases.

A surgical mitral valve repair is allways trough the chest. It can be splitting your sternum, or entering from the ribs (called minimally invasive). And, of course, heart must be stopped (and you have to be connected to the heart lung-machine).

 

[newarrior]

I did not have surgery yet. Mitra clip is not an option in my case because a good conventional repair can be achievable. Mitraclip, as i have been told by my cardiologist, is usually considered for those who are too risky for undergoing a traditional surgery. And it usually does not completely eliminate the regurgitation (it can reduce it from severe to moderate/slight, for instance). That said, Mitraclip is still a very good option, but for selected cases.

A surgical mitral valve repair is allways trough the chest. It can be splitting your sternum, or entering from the ribs (called minimally invasive). And, of course, heart must be stopped (and you have to be connected to the heart lung-machine).

ouch

 

[Woodcutter]

How do you feel now that's it is done? The same as before? Better?

A little bit of a challenge to answer how I "feel" because I was asymptomatic. So a couple of thoughts:

- As a lifetime runner, I could tell that my race performance was deteriorating. Trouble is, I was almost 50 . . . times had been deteriorating for 20 years! I believe running was peak demand for my heart. I had run both a 5k and half-marathon in the month preceding my first surgery. A year later I had run a 5K and half-marathon at paces within about 30 sec/mile of pre-surgery. From a competition standpoint that is not good . . . from a life standpoint, I consider that pretty good.
- I have no limitations on anything that I want to do. I am expected to have a normal lifespan. I.e. it's most likely not going to be my valve that is my downfall whereas previously that was becoming increasingly likely.
- I had my annual visit with my cardiologist just last week. I have also had arrhythmia issues so I was pleased to be in sinus rhythm with nothing irregular. Doc asked all the normal questions; a little poking, prodding, listening, then he asks "how much are you running?". I answer and he says "You've been coming in annually and everything is fine. You are in better condition than your cardiologist. I am wasting your money. How about you come back in 3 years?"

So, for me that is almost (but not quite!) the same as before I needed to see the heart doctor! I had known of my murmur since I was 20 and generally had an echo every 2 years.