I'm not too familiar with referral centers in NH. Not sure if there are any there. If you can get to New York, you can see Dr. David Adams at Mount Sinai Hospital. He is a well-known Mitral Repair surgeon who does many of these. https://www.mitralvalverepair.org/
Dr Marc Gillinov at The Cleveland Clinic does these all the time and has contributed to the present state of the techniques used. He also does robotic assisted: https://my.clevelandclinic.org/staff/2350-a-marc-gillinov There are several other surgeons at the Cleveland Clinic who do lots of MVRs. Referral centers such as these are well equipped to make things very easy logistically on those coming from out of town.
You can get a wealth of information at https://www.heart-valve-surgery.com/. There is even a "Surgeon Finder" across the top of the page where you can enter a location and a procedure and pull up surgeons in your area or any area you are willing to travel to. You can also find a "community link" across the top where you may be able to get recommendations for good MVR surgeons from patients who have had MVR surgery. If you are limited in how far you are willing to travel you might try calling the office of one of the well-known surgeons I mentioned above and see if they can recommend someone closer to your home. I've never done that but it might work. The surgeons who do a lot of MVR surgeries tend to know about each other. Remember that volume is key in MVR surgery, so you will only find a surgeon who does a lot of these at a referral center. If you have to travel to get to one, I'd recommend doing so.
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Ed M
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Original Message:
Sent: 08-07-2024 21:30
From: Laurie Hall
Subject: Newly diagnosed mitral valve regurgitation severe
Oh, thanks for all this info. Where do I find a referral center?
Original Message:
Sent: 8/7/2024 5:04:00 PM
From: Ed M
Subject: RE: Newly diagnosed mitral valve regurgitation severe
I had my MVR at Cleveland clinic. Mayo and others do these as well. it doesn't need to be robotic but there are some nice advantages since its less invasive. Robotic is more commonly done now than when I had mine done. In general, you will want to go to a referral center for this, because those are the only places that have enough volume such that they can afford to have people that specialize in MVR and do lots of them. This is probably even more true if you do it robotically because it takes even longer to get good at the robot. Most community hospitals don't have that volume, so their surgeons must do lots of different procedures and they never get good enough at MVR. Those folks just replace the valve unless its a simple repair. Those folks will often tell you "your valve wasn't repairable so I replaced it." What that really means is: "I didn't know how to repair it, so I replaced it." Any good surgeon who specializes in MVR such as you find at referral centers can repair nearly any leaky valve due to myxomatous degeneration which is by far the most common reason for mitral leakage. Other reasons include chemotherapy, bacterial endocarditis, rheumatic fever and a few others. Those valves may need to be replaced.
I hope this information is helpful.
Ed
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Ed M
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Original Message:
Sent: 08-07-2024 14:19
From: Laurie Hall
Subject: Newly diagnosed mitral valve regurgitation severe
Thanks for all your info Ed, much appreciated. Where did you have robotic surgery done?
Original Message:
Sent: 8/7/2024 12:57:00 PM
From: Ed M
Subject: RE: Newly diagnosed mitral valve regurgitation severe
I had severe regurgitation when I was 62 and had my mitral valve repaired several months later at 63. I was in heart failure due to the severe regurgitation. That was 11-years ago and I've been doing just fine and still am very active with exercise as I've been all of my life.
You very likely have myxomatous degeneration of your leaflet with prolapse but you should ask your cardiologist to confirm this diagnosis. It should also indicate your diagnosis on the cardiologist notes from you initial consult assuming you had an echo that is; if not, then your cardiologist probably thinks your situation is very minimal which would be nice. These valves are nearly always repairable provided you go to a center that does a lot of these. There are places in all major cities that do a lot of these and you should do your homework in advance of needed surgery. I see no real reason to rush to surgery if your cardiologist advises that you can wait while being monitored. Assuming you have myxomatous prolapse (very likely) your situation is quite common. About 1% of the population have this condition but only one in ten of those folks will ever need the surgery. It would not be beneficial to rush to surgery if you don't need it especially considering you may never need it. Again, in the meantime before you need the surgery that you may never need, I suggest you find those center known for doing a lot of MVR (mitral valve repair) and find a surgeon there you like or at least identify the place and some good surgeons. If you end up in the hands of some surgeon who does MVR but does all kinds of other cardio surgery also, then you may end up with a replacement valve which would be a real shame because outcome are not as good in that case. A well repaired valve is usually a lifetime solution. Mine was done robotically assisted which is a lot more common and improved now, than when I had mine done in 2013. No broken bones, no sternotomy, very little pain, and quick recovery. Don't panic and good luck!
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Ed M