Glad I found this group! Wondering how many of you are/were asymptomatic but made the decision to go ahead with surgery. I have severe mitral regurgitation, slightly enlarged left atrium, elevated lung pressures, but basically feel OK. I know it's a waiting game, not knowing when or how long before I start to feel not OK. The general consensus seems to be do something sooner rather than later, and that's why I've arrived at this decision after getting three opinions. I would like to hear about anyone's similar experiences and what they did. Thanks!
Hello, new here. MVR, scheduled for August surgery at Cleveland Clinic.
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I didn't have MVR but AVR as I was born with bicuspid aortic valve. I was completely asymptomatic before I went into surgery. My ejection fraction was a very healthy 77% though my pressure gradient was 68 mm/Hg, that was the peak not the mean which was still under 40, but no ventricular enlargement. I went into surgery on the advice of my cardiothoracic surgeon and cardiologist. Since I'm not a doctor I had to trust their judgement ! I certainly wasn't given a choice ! Apparently if you wait till you get symptoms, damage can be done to the heart and the risks can be greater in surgery. Given a choice, of course I would have waited till I had symptoms, it's certainly no fun going into surgery when you feel fit and well and coming out feeling the opposite - six months on I'm still not back to my level of fitness where I was before surgery BUT I know that if/when I complain to my cardiologist he will say it was for the best to have surgery when I was fit and well rather than when my heart was beginning to have problems. Go with the advice you have been given from the experts…unless you are a cardiologist too ?
river-wear
Well-known member
I had an aortic valve repair when I was still asymptomatic. My regurgitation (previously rated moderate-severe) turned out to be 5+ - at the highest end of the scale. My surgeon was amazed I was feeling fine. My EF had fallen from 55% to 50% over the past year. I had a second opinion from another surgeon; all agreed it was time. Also, the surgeon I saw last week for follow-up felt I have an "enlightened" cardiologist because he referred me for surgery before feeling sick, when I would have a more challenging recovery.
Good luck with your surgery. It looks like you're doing your homework, so once you make your decisions don't second guess yourself.
Good luck with your surgery. It looks like you're doing your homework, so once you make your decisions don't second guess yourself.
Nupur
Well-known member
I have moderate-severe mitral regurgitation, diagnosed 6 years ago. When first diagnosed, I had the same thought as you. Why wait? I was asymptomatic, and had no idea something was wrong with my heart. Never had a murmur before pregnancy and childbirth. Despite my cardiologist telling me it will be many years before I need surgery, I went and saw the surgeon at Stanford. He said his opinion was to wait, the heart was very strong, and my exercise tolerance was great. It seemed like my valve has a cleft that kind of gave away during the pregnancy, so the leaking and the heart working extra to make up for it has not gone on for long. But the leakage is pretty bad. So second pregnancy was forbidden, and he cautioned me about endocarditis, and said to take antibiotics before dental work, even if the guidelines had changed. Anyway, that was 6 years ago. Now my left atrium is borderline dilated, and I get easily fatigued. Couple of years ago, when I first talked to my cardiologist about if my risk factor has changed due to the left atrium being borderline, she said no and the only thing she would recommend is that IF I feel flutters during exercise, she would ask me to take a baby aspirin. I still sent my echo to Cleveland to Dr. Gillinov's office. He didn't say it needs to be done immediately. So I am in wait and watch mode. I have had long discussions with my cardiologist about why she feels comfortable with waiting. She said my heart is still pretty small and strong, the left ventricle is showing no changes, and if the left atrium changes consistently, it will be time. Right now, the risk of surgery outweighs risk of living with my native valve. But this might change. I have heard that towards the end it goes bad fast. The other reason to wait (for my case) is if the repair is difficult, I might have an easier choice of valve in my 50s than in my 40s. Even so, I always wonder how long, and worry about every symptom. I am hoping I will have ample time to consider all options when it is time. My son is now 11. I was diagnosed before he started Kindergarten, and he is going into middle school in Aug : ) I think I might make it with my native valve until he is in high school, but who knows. I don't take any chances with over doing anything (uphill hikes, walks in heat, etc). I don't let my heart rate go above 120/125 during exercise, I have had some flutters but no documented arrhythmia. My life is not what it was (I can't hike any more, that's my peeve), but still, having lost friends to cancer, I feel that I am lucky to be followed closely and even though this great big scary thing is going to happen, I can handle it when it comes. Made friends on this board over the years, and seeing them graduate makes me hopeful and confident.
I have decided that I want a consult at Cleveland in the next year, because I would like to go there for a successful repair, even though I live next to Stanford. If they say that my chances of repair will go down significantly if I wait, then I will very definitely consider getting it done sooner than later.
I commend your decision to get it done! Hope you have a repair.
Best wishes.
Nupur
Well-known member
http://circ.ahajournals.org/content/119/6/768.full
"Recent data also suggest that even asymptomatic patients with severe MR are at increased risk for cardiac complications. Enriquez-Sarano et al10 studied outcome of 456 prospectively enrolled patients who had quantitative assessment of MR (mean regurgitant volume, 66±40 mL per beat; mean effective regurgitant orifice area, 40±27 mm2). Among these asymptomatic patients with severe MR, the estimated 5-year risk of death was 22%, and the risk of any cardiac event (death resulting from cardiac causes, heart failure, or new atrial fibrillation) was 33%. Patients with an effective regurgitant orifice area of at least 40 mm2 had a 5-year survival rate that was lower than that expected on the basis of US Census data (58±9% versus 78%; P=0.03). On multivariate analysis, those patients with an orifice of at least 40 mm2 had an increased risk of death resulting from any cause (adjusted risk ratio, 2.90; P<0.01), death resulting from cardiac causes (adjusted risk ratio, 5.21; P<0.01), and cardiac events (adjusted risk ratio, 5.66; P<0.01). Cardiac surgery was performed in 232 patients during an average follow-up of 5 years, and correction of MR was independently associated with improved survival (adjusted risk ratio, 0.28; P<0.01). "
"Recent data also suggest that even asymptomatic patients with severe MR are at increased risk for cardiac complications. Enriquez-Sarano et al10 studied outcome of 456 prospectively enrolled patients who had quantitative assessment of MR (mean regurgitant volume, 66±40 mL per beat; mean effective regurgitant orifice area, 40±27 mm2). Among these asymptomatic patients with severe MR, the estimated 5-year risk of death was 22%, and the risk of any cardiac event (death resulting from cardiac causes, heart failure, or new atrial fibrillation) was 33%. Patients with an effective regurgitant orifice area of at least 40 mm2 had a 5-year survival rate that was lower than that expected on the basis of US Census data (58±9% versus 78%; P=0.03). On multivariate analysis, those patients with an orifice of at least 40 mm2 had an increased risk of death resulting from any cause (adjusted risk ratio, 2.90; P<0.01), death resulting from cardiac causes (adjusted risk ratio, 5.21; P<0.01), and cardiac events (adjusted risk ratio, 5.66; P<0.01). Cardiac surgery was performed in 232 patients during an average follow-up of 5 years, and correction of MR was independently associated with improved survival (adjusted risk ratio, 0.28; P<0.01). "
Thanks Nupur,
There are so many things to weigh in making this decision. I've known I had mitral valve prolapse since I was a kid but I honestly don’t know when the mitral regurgitation started. I'm now 58. My cardiologist has been monitoring it closely through echoes and TEEs over the past 6 years or so and he has strongly suggested that I get it fixed now. I got a second opinion from a local cardiac surgeon who said he thinks I could wait. So I sent my records to Cleveland Clinic for a third opinion. They didn't actually give me an opinion but instead presented the facts about my current condition. Yes, I have some but not all of the things they look for when determining if you're a candidate for surgery. The decision is up to me. I've gone back and forth over the data and from what I know I decided to do it now. While my heart function is good, it is working harder to compensate for the leakage. The elevated lung pressures is something new that wasn't on the last echo. The longer I wait the more I'll be at risk for developing atrial fib. There's a pretty good chance for repair rather than replacement if I do it now. When I go to Cleveland Clinic they'll do labs, cxr, ekg, echo, ct, pft, and a heart cath, after which I'll meet with the surgeon and find out if they can do the minimally invasive surgery.
Best wishes to you also in dealing with the waiting. It’s hard to know what’s the right thing to do. So many things factor into the decision - age, overall health, symptoms or no symptoms. Thank you for sharing your experience here. It helps to know how others are dealing with their condition.
There are so many things to weigh in making this decision. I've known I had mitral valve prolapse since I was a kid but I honestly don’t know when the mitral regurgitation started. I'm now 58. My cardiologist has been monitoring it closely through echoes and TEEs over the past 6 years or so and he has strongly suggested that I get it fixed now. I got a second opinion from a local cardiac surgeon who said he thinks I could wait. So I sent my records to Cleveland Clinic for a third opinion. They didn't actually give me an opinion but instead presented the facts about my current condition. Yes, I have some but not all of the things they look for when determining if you're a candidate for surgery. The decision is up to me. I've gone back and forth over the data and from what I know I decided to do it now. While my heart function is good, it is working harder to compensate for the leakage. The elevated lung pressures is something new that wasn't on the last echo. The longer I wait the more I'll be at risk for developing atrial fib. There's a pretty good chance for repair rather than replacement if I do it now. When I go to Cleveland Clinic they'll do labs, cxr, ekg, echo, ct, pft, and a heart cath, after which I'll meet with the surgeon and find out if they can do the minimally invasive surgery.
Best wishes to you also in dealing with the waiting. It’s hard to know what’s the right thing to do. So many things factor into the decision - age, overall health, symptoms or no symptoms. Thank you for sharing your experience here. It helps to know how others are dealing with their condition.
I had mitral valve repair 9 weeks ago. At that time I was about where you are now. Seriously, you sound like me! Severe regurg, with left atrium showing slight enlargement. No physical symptoms, 55 year old. Been watching this progress over the last 6 years with annual echos. This time the regurg went from moderate to severe. I was told that the time had come. The sooner the better... before the heart chambers start bulking up to compensate for having to work so hard.
I had decided on getting a mechanical replacement, but (unlike everyone else working with me) the surgeon thought only one leaflet was prolapsing and a repair would easily be possible. He did minimally invasive, but did not use robotic to repair the one leaflet. Other than a few bouts of irregular heartbeat and a pneumothorax early on, recovery has been pretty much textbook.
Sometimes I wish I had gotten the mechanical, but that's just me letting doubt creep in. You have to make your choice and be happy with it.
I had decided on getting a mechanical replacement, but (unlike everyone else working with me) the surgeon thought only one leaflet was prolapsing and a repair would easily be possible. He did minimally invasive, but did not use robotic to repair the one leaflet. Other than a few bouts of irregular heartbeat and a pneumothorax early on, recovery has been pretty much textbook.
Sometimes I wish I had gotten the mechanical, but that's just me letting doubt creep in. You have to make your choice and be happy with it.
Nupur
Well-known member
How do they measure increased lung pressure?
My echos vary quite a bit, depending on who reads it. One person writes borderline left atrium dilation, another says fine next year. I have been plotting my numbers for 6 years and the variability bothers me, but I am told the margin of error can be big. Here's one web site about LA dimensions. Is your LA > 4.6 cm?
http://web.stanford.edu/group/ccm_echocardio/cgi-bin/mediawiki/index.php/Left_atrium_dimensions
My LA diameter has been recorded anywhere from 3.4 - 4.2. 4.1-4.6 is mild dilated according to the above web site. But I am told that the volume index is more indicative. My logical mind used to obsess about these numbers, margin of error, and how they determine things. I have relaxed and started trusting my cardio, esp because I know she does NOT dismiss my symptoms. Every time I get nervous about a flutter, she is responsive and wants me to either do a stress test to see if I get exercise induced episodes of Afib or Aflutter, or get a Zio patch. I am just tired of watching my symptoms carefully. I don't know if I push myself, I will actually cause some cardiac event so I am always cautious, and like you I am not looking forward to developing Afib. But my numbers still don't warrant surgery.
Good luck to you!
Hi!
I am another one on the same boat! (moderate/severe mitral regurgitation, consequence of a bileaflet prolapse, mostly posterior. Followed on a 6 months schedule. Symptomless.). I also have some LA enlargement. But, according to what i have read and i was told by my cardiologist, if your leakage is severe, then the key points to consider in order to refer you to surgery are basically (no order intended):
Ejection fraction below 60%.
End of systolic LV diameter greater than 40mm.
Symptoms (most common being "out of breath").
Atrial fibrillation.
Pulmonary hypertension.
Left atrial enlargement is of course not good, and is something that is considered, but does not seem a key factor. End of diastolic LV diameter is also something to take into account, but seems not as important as the "end of systolic diameter". The logic behind this, i beleive, is that even if LV has enlarged, if it contracts well (that is, your "end of systolic" diameter is small), then the LV systolic function is preserved. In what respect to the regurgitation estimation (none, trivial, mild, moderate, severe), in some cases (as mine), the regurgitant jet is very eccentric, so i was told that many formulas commonly used do not give reliable results. So, the degree is somewhat estimated by the specialist performing the echo.
On the other hand, there are some recent studies suggesting that, for SEVERE mitral regurgitation, early surgical repair may be a better option than a watchfull waiting. By "early" i mean that none of the triggers i mentionned are present. However, at least in my country and according to my own experience, cardiologists seems to prefer a more conservative approach.
Good luck to all!
I am another one on the same boat! (moderate/severe mitral regurgitation, consequence of a bileaflet prolapse, mostly posterior. Followed on a 6 months schedule. Symptomless.). I also have some LA enlargement. But, according to what i have read and i was told by my cardiologist, if your leakage is severe, then the key points to consider in order to refer you to surgery are basically (no order intended):
Ejection fraction below 60%.
End of systolic LV diameter greater than 40mm.
Symptoms (most common being "out of breath").
Atrial fibrillation.
Pulmonary hypertension.
Left atrial enlargement is of course not good, and is something that is considered, but does not seem a key factor. End of diastolic LV diameter is also something to take into account, but seems not as important as the "end of systolic diameter". The logic behind this, i beleive, is that even if LV has enlarged, if it contracts well (that is, your "end of systolic" diameter is small), then the LV systolic function is preserved. In what respect to the regurgitation estimation (none, trivial, mild, moderate, severe), in some cases (as mine), the regurgitant jet is very eccentric, so i was told that many formulas commonly used do not give reliable results. So, the degree is somewhat estimated by the specialist performing the echo.
On the other hand, there are some recent studies suggesting that, for SEVERE mitral regurgitation, early surgical repair may be a better option than a watchfull waiting. By "early" i mean that none of the triggers i mentionned are present. However, at least in my country and according to my own experience, cardiologists seems to prefer a more conservative approach.
Good luck to all!
Nupur
Well-known member
Ha! you have an eccentric jet too! I have a very eccentric jet. They always say "regurgitation at least moderate, maybe underestimated due to eccentric jet". One of them said "two eccentric jets". I figured I have a tear or something that's flopping around.
In my case, my numbers don't justify my reduction in exercise tolerance in the last few years, and since I suffer from a pretty severe anxiety disorder since diagnosis, I have spent the last few years trying to discern between what's caused by stress and anxiety and what's real. Unfortunately, flutters and PVCs are exacerbated by both
so I've had a tough time. Generally, cardiologists here are conservative too, but maybe they are now warming up to the fact that successful repairs can be performed. Plus, patients are being proactive. I certainly insisted on seeing the surgeon after my diagnosis and didn't rest until also said we should wait. And I'd like to keep checking with a surgeon every few years. They are the ones who actually see how bad things were and how patients were compensating for their failing valves.
Good luck to you as well!
river-wear
Well-known member
FYI, the American standards used to assess intervention can be downloaded here:
http://content.onlinejacc.org/article.aspx?articleid=1838843
The tables are on pages 78-79.
http://content.onlinejacc.org/article.aspx?articleid=1838843
The tables are on pages 78-79.
Thanks for your post Blair. Sounds like you're doing well. I'm hoping for a repair; don't like the thought of having to be on blood thinners for the rest of my life. And I'm really hoping that my surgery and recovery will be a textbook case. I've been reading too much I think and am afraid of all the complications that could arise.
Nupur,
I'm not sure how they measure increased lung pressure. I just know on my last echo something indicated it because it was the first time my cardiologist ever mentioned it. I wish I knew what all my numbers are. I've read the echo and TEE reports more than once and most of it is too technical. The things that stick in my mind are severe regurgitation, slight enlargement of left atrium, pulmonary hypertension, and oh yes! that eccentric regurgitant jet! I'm sure after they do more tests at Cleveland Clinic next month the surgeon will be able to tell me exactly what it all means. I just know I'm going through with this before it becomes worse. I don't want to have to worry about this after I retire and am ready to enjoy life.
I'm not sure how they measure increased lung pressure. I just know on my last echo something indicated it because it was the first time my cardiologist ever mentioned it. I wish I knew what all my numbers are. I've read the echo and TEE reports more than once and most of it is too technical. The things that stick in my mind are severe regurgitation, slight enlargement of left atrium, pulmonary hypertension, and oh yes! that eccentric regurgitant jet! I'm sure after they do more tests at Cleveland Clinic next month the surgeon will be able to tell me exactly what it all means. I just know I'm going through with this before it becomes worse. I don't want to have to worry about this after I retire and am ready to enjoy life.
ejc61
Well-known member
I had been seeing my cardiologist for several years with 6 month echos. It got to the severe regurg stage with some atrium enlargement. Never symptomatic. TEE showed flailing mitral valve. Surgery 4 months later. Also told better to do it sooner than later. Pretty par for the course. Surgery was better than imagined. It'll be good.
joel1947
Active member
Same, AVR, 4+ regurg, told I would know when it was time. I decided it was time in May, surgery in a month. What was surprising was that during the pre-op testing it was discovered that I did not have a BAV and it can be repaired. And big surprise because I have awesome HDL/LDL levels, a 80% LAD stenosis. I wonder if my worsening endurance is due more to the LAD than the regurg?
