Hi, I’m a 54-year-old man recently diagnosed with Barlow’s disease (degenerative mitral valve disease). I would appreciate expert opinions on timing of ...Read more
Hi, I’m a 54-year-old man recently diagnosed with Barlow’s disease (degenerative mitral valve disease). I would appreciate expert opinions on timing of surgery.
My measurements:
Mitral regurgitation: Recently downgraded to moderate
Ejection Fraction (EF): 54–56%
Global Longitudinal Strain (GLS): –22% (very normal)
Left atrial volume index (LAVI): 59 ml/m² (significantly enlarged)
Left ventricular dimensions:
LV end-diastolic diameter: 63 mm
LVEDVI: 95 ml/m²
Pulmonary pressure: Normal
Symptoms: None
Exercise testing: On a full maximal cardiopulmonary exercise test (CPET), my MR actually decreased during peak exercise, according to my cardiologist.
Background:
My father also had valve disease. His condition presented primarily as arrhythmias (atrial fibrillation and other rhythm disturbances), which ultimately led to valve replacement and later sudden cardiac death. Because of this history, I am concerned about waiting too long.
My question:
Even though my MR is currently moderate and I have no symptoms, would it be better to proceed with early elective mitral valve repair while I am in good physical condition, rather than wait until symptoms or arrhythmias develop later? In other words, is “watchful waiting” really the best strategy for someone with Barlow’s disease, enlarged left atrium, but preserved LV function and excellent exercise capacity? Or is there a benefit to repairing the valve now to avoid long-term atrial remodeling or future rhythm problems?
Thank you very much for your insights.
Melinda Donahue Hi, I also had severe mitral valve regurgitation and Barlow’s mitral valve. The severe regurgitatio ... Read more
Melinda Donahue Hi, I also had severe mitral valve regurgitation and Barlow’s mitral valve. The severe regurgitation of the mitral valve caused a mild regurgitation of the tricuspid valve. I was being watched for a long time and in 2023. I found a new cardiologist because my former cardiologist retired. I had to see him every six months and he told me it was time I went to see a surgeon. My heart was in excellent condition and was not affected by the severe regurgitation, but I was told if I waited any longer, I would have a problem. My surgery was elective at that point and at the same time was an ‘emergent’ situation as it was quickly becoming critical. I was asymptomatic all my cords had to be repaired.
I would suggest meeting with the surgeon. I was operated on at Mount Sinai by two amazing surgeons. I wouldn’t wait I would get a surgery consult.
Jeffrey Sweatlock Johan: I agree with Melinda - don't wait, get a consult. Dr. Gillinov has a one hour webinar with Ada ... Read more
Jeffrey Sweatlock Johan: I agree with Melinda - don't wait, get a consult. Dr. Gillinov has a one hour webinar with Adam on " 3 questions to ask before mitral valve surgery" - you can search Youtube or the Learning Center Tab, videos, then Mitral repair at the bottom. The first question he answers is "When" to get your repair done. You may not feel you have symptoms, but we often self-limit ourselves without realizing. Do you get swollen ankles (sock marks) or follow your weight daily? Also, your EF is down from the normal 65% with MR and your Left Atrium is enlarging. My understanding is that you do not want to wait for your heart to decompensate and remodel - enlargement of the left ventricle - because it can make a repair more difficult. Look for a Mitral Reference Center on the Mitral Foundation website. Good Luck!
Jeffrey Sweatlock whoops... I just saw you are from Sweden. The mitral reference center criteria include a hospital per ... Read more
Jeffrey Sweatlock whoops... I just saw you are from Sweden. The mitral reference center criteria include a hospital performing at least 50 mitral repairs per year and the surgeon does at least 25. Personally, I would look for at least double, but preferably triple those numbers. Fortunately for you, the Karolinska, Uppsala, and Linköping hospitals are highly regarded.
Susan Lynn I had a Barlow's valve and had it repaired eight years ago. Timing can be tricky, but you want to d ... Read more
Susan Lynn I had a Barlow's valve and had it repaired eight years ago. Timing can be tricky, but you want to do it before you have any heart enlargement. Good luck with your decision.
Jeffrey Sweatlock Johan: Susan is echoing what Dr. Gillinov recommends. Check with your doctor if your end diastolic d ... Read more
Jeffrey Sweatlock Johan: Susan is echoing what Dr. Gillinov recommends. Check with your doctor if your end diastolic diameter is enlarging. The best advocate we have for our health is our educated self.
I am from: Lidingö, Sweden
My measurements:
Mitral regurgitation: Recently downgraded to moderate
Ejection Fraction (EF): 54–56%
Global Longitudinal Strain (GLS): –22% (very normal)
Left atrial volume index (LAVI): 59 ml/m² (significantly enlarged)
Left ventricular dimensions:
LV end-diastolic diameter: 63 mm
LVEDVI: 95 ml/m²
Pulmonary pressure: Normal
Symptoms: None
Exercise testing: On a full maximal cardiopulmonary exercise test (CPET), my MR actually decreased during peak exercise, according to my cardiologist.
Background: My father also had valve disease. His condition presented primarily as arrhythmias (atrial fibrillation and other rhythm disturbances), which ultimately led to valve replacement and later sudden cardiac death. Because of this history, I am concerned about waiting too long.
My question: Even though my MR is currently moderate and I have no symptoms, would it be better to proceed with early elective mitral valve repair while I am in good physical condition, rather than wait until symptoms or arrhythmias develop later? In other words, is “watchful waiting” really the best strategy for someone with Barlow’s disease, enlarged left atrium, but preserved LV function and excellent exercise capacity? Or is there a benefit to repairing the valve now to avoid long-term atrial remodeling or future rhythm problems?
Thank you very much for your insights.
I would suggest meeting with the surgeon. I was operated on at Mount Sinai by two amazing surgeons. I wouldn’t wait I would get a surgery consult.