Contradictory opinion on when to have mitral valve repair

[Nupur]

Hi all, I was diagnosed with moderate/severe mitral regurgitation almost 10 years ago. Have been in the waiting room since then. Have been on the downward slope last few years, dealing with palpitations and lowered exercise tolerance. But my doc said it's still ok. In the last two years, my left atrium has become enlarged. It went from normal/slight enlarged at 34ml/m2 in 2015, to moderately enlarged at 43.3ml/mm2 in 2016 to severely enlarged at 48.9 ml/mm2 this Sept. My doctor does not think it is time yet. I sent my echo to Cleveland Clinic and was told I should do surgery now. I also saw a surgeon at Stanford (next to me) and he concurred with my doctor. Since then I have seen two other cardiologists who have said I am in the gray zone but I should not wait. Gray zone because my ventricular function is ok (EF 60%) and despite the enlarged LA I don't have AF yet. The lack of consensus has been really bothering me but as one of the doctors said "You have to pull the trigger on this". Should I ?

The dilemma is further compounded by the fact that two doctors have told me NOT to go to Stanford (the best teaching hospital in this area) because of high rate of complications. I am so upset about that! This leaves me with limited choice. Of course I can go to Cleveland, and the best chances of repair is likely there, but the travel back after surgery is scary. Plus I would have to wait until the end of the school year ( have a high school kid now). Would you reject a hospital even if the surgeon was great because of the rate of complication?

Anyone else in the same dilemma?

Thanks in advance.

 

[carolinemc]

Nupur, find your voice and speak up to the cardio. You need to be your own advocate on this issue. You did a great thing to get other opinions and now show them to your cardio. If he still keeps up saying that everything is fine, go to another cardio. You know if your in a heart crisis. And sounds like you are having problems that needs to be addressed. Change doctors asap, if this one still keeps saying the same thing. Do not wait long. Good luck. Hugs for today.

 

[dornole]

It sounds like the consensus is "gray area" and though it is very uncomfortable to have that dissension, you might have to be the one to decide. What was the rationale behind the "go now" vs. "wait"? And what does "now" mean? My cardiologist has explained to me the criteria he uses to make the decision. He also always says that my perceived quality of life is very important in the decision-making.

For what it's worth, I also have mod-severe mitral regurgitation (as well as mod stenosis). My LA is moderately enlarged and doc does not seem concerned about that at all. He is much more focused on the LV and making sure we don't let that enlarge at all. Along with other factors (EF which is fine at 60-65% and gradient which is 7-12mm/Hg in recent tests -he didn't like 12, but on TEE it went back to 7) he says that any sign of LV enlargement is when he would send me for surgery regardless of how I feel.

I wish you luck with figuring this out. Second opinions aren't so reassuring when they disagree. I agree with caroline that discussing the results of your second opinions with your cardio and asking them to explain why they're recommending the course they are and why someone might disagree could be a next step.

 

[Zoltania]

Here are the AHA/ACC guidelines on when surgery is recommended: http://circ.ahajournals.org/content/early/2017/03/14/CIR.0000000000000503. (Sorry, I'm having trouble figuring out how to convert the URLto a live link.)

 

[Nupur]

dornole, my LV function is fine which is what some doctors focus on. Others are of the opinion that the LA enlargement is sign of trouble and there is no reason to wait until LV dysfunction or AF which ever comes first.

 

[Agian]

I think you've answered your own question Nupur.
Is your cardio waiting for you to get AF before he says 'yep, it's time'?
Remember, the surgeons are the experts in this.

 

[Eva]

Hi Nupur,

ive been thinking about you. I agree with Agian ... check with a surgeon or two (if you have good insurance).
Best wishes and keep us (and me) posted.

 

[Northernlights]

Dear Nupur

Actually your ejection fraction is not OK at 60%.
60% is the point for a Class I recommendation for surgery.

As usual I am going to quote the 2017 guidelines ( thank you Zoltania for posting the link) I do recommend people read the guidelines for their particular valve problem!

'Class Ia: Mitral valve surgery is recommended for asymptomatic patients with chronic severe primary MR and LV dysfunction (LVEF 30% to 60% and/or left ventricular end-systolic diameter [LVESD] ≥40 mm, stage C2) '

'Class IIa:
Patients with severe MR who reach an EF ≤60% or LVESD ≥40 have already developed LV systolic dysfunction, so operating before reaching these parameters, particularly with a progressive increase in LV size or decrease in EF on serial studies, is reasonable.'

The rationale is explained as follows:
'Longstanding volume overload leads to irreversible LV dysfunction and a poorer prognosis. Patients with severe MR who develop an EF ≤60% or LVESD ≥40 have already developed LV systolic dysfunction (112-115). One study has suggested that for LV function and size to return to normal after mitral valve repair, the left ventricular ejection fraction (LVEF) should be >64% and LVESD <37 mm (112). Thus, when longitudinal follow-up demonstrates a progressive decrease of EF toward 60% or a progressive increase in LVESD approaching 40 mm, it is reasonable to consider intervention. Nonetheless, the asymptomatic patient with stable LV dimensions and excellent exercise capacity can be safely observed.'

The 2014 guidelines explain a bit more:
'If moderate LV dysfunction is already present, prognosis is reduced following mitral valve operation. Thus, further delay (even though symptoms are absent) will lead to greater LV dysfunction and a still worse prognosis. Because the loading conditions in MR allow continued late ejection into a lower-impedance LA, a higher cutoff for “normal” LVEF is used in MR than in other types of heart disease. Although it is clearly inadvisable to allow patients’ LV function to deteriorate beyond the benchmarks of an LVEF less or equal to 60% and/or LVESD greater or equal to 40mm, some recovery of LV function can still occur even if these thresholds have been crossed. '

I hope this helps to explain why Cleveland is recommending surgery now, in accordance with the guidelines.
I certainly would not want to jeopardise my heart function by waiting any longer. I see no point in asking the opinion of the best hospital for mitral valve repair and not following it.

 

[dornole]

Well, his mitral regurg is mod-severe, not severe. Which better explains the differences of opinion. The LVEF has to be interpreted with the degree of mitral regurg in mind. It is an estimate not a direct measurement, at least it is always stated that way on my labs.

I can see what they are saying with the LA enlargement in your case, as the vector seems steep and the change fairly rapid. Do you know, is it expected that LV enlargement follows afterward in a predictable pattern? Making me a bit nervous now, though my LA is only moderate and more stable than yours.

 

[Nupur]

For some doctors, LA enlargement does not factor in the guideline unless there is AF. However, others have said the LA volume being so high is a bad sign and it is not good to wait for AF. I was under the impression that surgeons are more aggressive. But the chair of cardiothoracic surgey at Stanford said 43.3 was not a reason to have surgery unless there were other indications. He was aware of the opinion from Cleveland and said that there is a range of opinion on this. When it increased to 48.9, I contacted his nurse and they reviewed it and said the change wasn't significant.

I think at this point it is up to me. And I am very confused and unsure which way to proceed. Currently thinking of going to Cleveland in June 2018.


Interpretation Summary
1. Normal LV size and systolic function. Severe Left atrial enlargement.
2. MV prolapse predominantly of anterior leaflet with moderate to severe MV regurgitation. No
pulmonary hypertension


LVIDd: 4.8 cm LVIDs: 2.7 cm EF(MOD-sp4): 68.9 %
LA Vol index - 48.9 ml/mm2
LA length - 5.5 cm

 

[Nupur]

dornole, mitral stenosis and regurgitation are probably treated differently. a) stenosis cannot be repaired so there is no benefit of an earlier intervention, b) in case of regurgitaion, LA takes quite a beating from the backflow and enlarges before the LV

 

[tom in MO]

You have two cardios and one surgeon who believe you are due for surgery. On the other side you have one cardio and one surgeon who say to wait. Sounds like both paths are good ones. However only one path leads to recovery. What do you get waiting?

In my case, I was told I could wait but not long due to risk of "The syndrome known as sudden death." When I pushed back as to how long I could wait, I was told there was no hard/fast rules but not to wait too long. When asked what was "too long" I got the answer, "I wouldn't wait more than a few months." I got the same message from my cardio and surgeon. Surgeon really wouldn't say much other than "it's time now." I had it in 3 months.

There's no need to wait until the end of the school year. It may be easier if your child is occupied in school and has readily available outside support. I did it during my kid's senior year and it worked out fine. They prayed for me in school

 

[Midpack]

Hi Nupur!

I am in a very similar situations than yours. I have severe mitral valve regurgitation as a consequence of a bileaflet mitral valve prolapse (mostly posterior). No symptoms for the moment, and the usual surgery triggers not reached. My LA is also pretty enlarged. The 2 cardiologists i see and trust agree that i should wait. Next week i will have my 6 months checkup, and have news about my current situation. I was diagnosed back in 2011, and have been followed with echo twice a year since then.

As you say, there is a gray zone, where opinions differ. In my country, doctors have a more conservative approach. In the States, on the contrary, they seem to act more agresively (probably because there are better specialized surgeons). A key point in mitral valve surgery is the probability of achieving a good repair of the valve (as you surely know, in the case of mitral valve, a repair is always preferable over a replacement - a big difference with aortic valve). When both leaflets prolapse, the repair is certainly more difficult, and this may be also a reason to not refer to an early surgery. As a patient in the waiting room, i exactly know the anxiety of having a pending MAJOR surgery in the future. But anxiety should not play a role in surgery timing.

Trust your doctors. And, as in your case, when their opinions differ, trust the doctor you trust the most!

 

[dornole]

Just in case you ever develop mitral stenosis, it's for sure treatable, in fact I was able to have it "repaired" (in a blunt force manner) via a cathether / balloon technique to crack it open, 15 years ago. That left me with increased regurgitation (now mod-severe) which is one of the risks of the procedure, and now have developed moderate LA enlargement as a result. I'm on 325 aspirin to reduce risk of developing a clot if I start to have a-fib. Now the stenosis is starting to worsen again. It's unknown how it will progress and whether I can have the balloon again or need MVR. It depends on how bad the regurgitation is whether it's safe to try the balloon. My cardiologist thinks a surgeon won't want to repair my twisted, crummy scarred up rheumatic valve that is prone to re-crudding. But, I haven't gotten to the point of asking actual surgeons yet. My cardiologist also does TMVR, but strictly in a testing phase for folks with no other options. Luckily, I am not there. I would rather have OHS than be on that particular patient list.

It does sound like you can decide. Sending best wishes for a clear mind and that you'll find a route that you can settle on and move forward.

 

[FixedAgain]

I can only share that I have been in a similar situation when my first Mitral Valve repair started to a slow fail 2-3 years after..then at five years post op, I felt much as you describe feeling. I saw two leading heart surgeons. One wanted to do it as soon as I could the other said it's 50-50 and it's 'up to me'.

I decided to do it immediately.

In my case 'immediately' meant 3 years later! when I went in for a checkup and the cardiologist immediately sent me downstairs for an Echo test.

I got the results an hour later and he said, You need to get the Valve Fixed Again.

I got really lucky and the surgeon was able to fix it. IN fact, he said to me as I lay there in the recovery room. "I did what you wanted and fixed it. It was easy"

If I had to do it all over again, I'd have gotten the surgery (and not Minimally invasive) years ago.

Best of luck to you!