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Joan L.

Member
Joined
Mar 20, 2022
Messages
11
I’m 73 and I’ve had mitral valve prolapse since birth. It’s been monitored closely for many years. Asymptomatic. I’m now told I need open heart surgery and a valve replacement asap. So - I have questions and want to learn from other people’s experiences. Thanks in advance!
 

MdaPA

Well-known member
Joined
Jul 8, 2020
Messages
245
Hi Joan,
I’m 73 and I’ve had mitral valve prolapse since birth. It’s been monitored closely for many years. Asymptomatic. I’m now told I need open heart surgery and a valve replacement asap. So - I have questions and want to learn from other people’s experiences. Thanks in advance!
Have you met with a heart surgeon yet? Perhaps your MV can be repaired rather than replaced if it requires surgery?

"The most common cause of mitral regurgitation is a condition called degenerative mitral valve disease—this is also called mitral valve prolapse, myxomatous mitral valve disease, and a floppy mitral valve. Such valves can be repaired (rather than replaced) in more than 95% of patients."
Cleveland Clinic & mitral valve repair
 

Joan L.

Member
Joined
Mar 20, 2022
Messages
11
Hi Joan,

Have you met with a heart surgeon yet? Perhaps your MV can be repaired rather than replaced if it requires surgery?



Cleveland Clinic & mitral valve repair
Thanks for your reply. I have met with the surgeon and, given my age he was emphatic about a bovine valve and open heart.

My cardiologists over the years have always suggested that I might have to have a repair (not replacement) at some point or that I might just live my whole life without heart surgery. It’s hard to understand why the severity of my regurgitation was not detected earlier - (40% of the blood is being regurgitated). I’ve had a TEE in the past and was told I had “moderate “ regurgitation. Also - in maybe 10 years of echoes every 6 months, my heart hasn’t grown in any significant way.

If I went to Cleveland, wouldn’t I need to stay in the area for several months in case there were complications?
 

Joan L.

Member
Joined
Mar 20, 2022
Messages
11
Hi Joan,

Have you met with a heart surgeon yet? Perhaps your MV can be repaired rather than replaced if it requires surgery?



Cleveland Clinic & mitral valve repair
I should add - that the TEE I had 5 years ago was done to evaluate whether I had endocarditis. I know that some vegetation was on my mitral valve because a tiny piece broke off some months later and I had a small stroke - which I never had any symptoms from and didn’t realize had happened. Maybe my valve was too damaged by that to make me a candidate for repair.

That said - Thank you very much! I’ll be looking at Cleveland and you’ve given me some new questions to ask the surgeon!
 

MdaPA

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245
If I went to Cleveland, wouldn’t I need to stay in the area for several months in case there were complications?
My wife had 2 OHS at Cleveland Clinic and both times we stayed only a few days after her discharge in a local hotel before traveling home (first time was a 45 min flight home and 2nd time was 7 hr drive).

My cardiologists over the years have always suggested that I might have to have a repair (not replacement) at some point or that I might just live my whole life without heart surgery.
Suggest seeking out multiple 2nd opinions with different surgeons at different hospitals/institutions to understand what all your options are.
 

Geofd

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Jul 5, 2021
Messages
39
Location
Framingham Massachusetts
Hello,I just had mitral valve REPAIR surgery in September, I had severe regulation,and some of the leaflet cords were disconnected, I was 61, now fully recovered,Dr said by the ultra sound and pictures he was very certain he could make the repair, but in the case he couldn't I chose a mech valve,anyway he operated thru my right rib cage
Under my arm, I have about a 3-4" scat,was in the hospital from monday-saturday,walking the day after,no far, had it done in mass general hospital
I. Boston, near were I live,it was the best experience I have ever had in the hospital right down to the food,yes like the above poster said please get more options ,my surgery was called ring surgery, looks like a rubber ringsewed to the valve
 

Joan L.

Member
Joined
Mar 20, 2022
Messages
11
My wife had 2 OHS at Cleveland Clinic and both times we stayed only a few days after her discharge in a local hotel before traveling home (first time was a 45 min flight home and 2nd time was 7 hr drive).


Suggest seeking out multiple 2nd opinions with different surgeons at different hospitals/institutions to understand what all your options are.
Thank you. That’s very helpful.
Hello,I just had mitral valve REPAIR surgery in September, I had severe regulation,and some of the leaflet cords were disconnected, I was 61, now fully recovered,Dr said by the ultra sound and pictures he was very certain he could make the repair, but in the case he couldn't I chose a mech valve,anyway he operated thru my right rib cage
Under my arm, I have about a 3-4" scat,was in the hospital from monday-saturday,walking the day after,no far, had it done in mass general hospital
I. Boston, near were I live,it was the best experience I have ever had in the hospital right down to the food,yes like the above poster said please get more options ,my surgery was called ring surgery, looks like a rubber ringsewed to the valve
Thanks. I’m getting a second opinion at Brigham and Womens which is a two-hour drive for us and we have relatives nearby, so that is a good option. I think I’ll also look into Cleveland. They seem to be able to do a repair in most cases.
 

pellicle

Professional Dingbat
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Nov 4, 2012
Messages
9,891
Location
Queensland, OzTrayLeeYa
Hi and welcome


I know that some vegetation was on my mitral valve because a tiny piece broke off some months later and I had a small stroke - which I never had any symptoms from and didn’t realize had happened. Maybe my valve was too damaged by that to make me a candidate for repair.
Glad you're OK now. That sounds like it may indeed complicate things, but the good news is it doesn't matter as the replacement is really no worse than a repair.
 

Joan L.

Member
Joined
Mar 20, 2022
Messages
11
Thanks for that info. Maybe what I mean is that I hope I can qualify for a less invasive surgery than open heart. As I understand it, recovery is much quicker with the small incision. I’m looking forward to having the surgeon explain why he’s so emphatic that I need open heart surgery.
 

Croooser

VR.org Supporter
Joined
Apr 21, 2021
Messages
63
I had aortic valve replaced and aortic aneurysm repaired at Cleveland last July at age 71. I will relate my experience as an out of town patient from Florida. None of this matters unless you are considering CC because you think it may be the best place to go. Despite the abundance of high quality health care in Florida, my wife and I decided that CC was our choice.

In addition to their expertise, they have a well functioning program for out of town patients.

My experience was arrive Cleveland on a Sunday with 3 days of tests and consults with surgery on Thursday. 1 day in ICU, then step down unit - private room. Then released to hotel on Monday and cleared to fly home Wednesday after some tests. 11 days in Cleveland. Post op follow up with my regular primary and cardio in Florida.

No rental car required. Rough neighborhood, but it is safe between the 3 hotels within a block of the clinic and nonstop shuttle service if you don't want to walk. There is a food court on premise - not the best but good enough for whoever goes with you to get by while there and also restaurant and room service in the hotel. They provide a complimentary car service from and back to the airport. My wife was permitted to stay in my private post op room from 7AM until 9 PM after 1 day in ICU. Despite having to fly to and from Cleveland, it was easier on my wife to be only a block away - no daily commute and able to take a break without having to go home.

CC has some well developed marketing/info materials. Their website includes some video interviews with their surgeons. We actually used those videos to make the decision to go to CC and to select a surgeon.

Other thoughts:

CC is a high volume operation. They do a couple of thousand heart surgeries a year with a dedicated department for valve surgeries. The high volume results in high expertise. However, they move you through with efficiency. They treated us with respect but we did not make any new friends there. OTOH, there is probably not anything that they have not seen before and are not prepared to deal with.

HTH
 

Joan L.

Member
Joined
Mar 20, 2022
Messages
11
I had aortic valve replaced and aortic aneurysm repaired at Cleveland last July at age 71. I will relate my experience as an out of town patient from Florida. None of this matters unless you are considering CC because you think it may be the best place to go. Despite the abundance of high quality health care in Florida, my wife and I decided that CC was our choice.

In addition to their expertise, they have a well functioning program for out of town patients.

My experience was arrive Cleveland on a Sunday with 3 days of tests and consults with surgery on Thursday. 1 day in ICU, then step down unit - private room. Then released to hotel on Monday and cleared to fly home Wednesday after some tests. 11 days in Cleveland. Post op follow up with my regular primary and cardio in Florida.

No rental car required. Rough neighborhood, but it is safe between the 3 hotels within a block of the clinic and nonstop shuttle service if you don't want to walk. There is a food court on premise - not the best but good enough for whoever goes with you to get by while there and also restaurant and room service in the hotel. They provide a complimentary car service from and back to the airport. My wife was permitted to stay in my private post op room from 7AM until 9 PM after 1 day in ICU. Despite having to fly to and from Cleveland, it was easier on my wife to be only a block away - no daily commute and able to take a break without having to go home.

CC has some well developed marketing/info materials. Their website includes some video interviews with their surgeons. We actually used those videos to make the decision to go to CC and to select a surgeon.

Other thoughts:

CC is a high volume operation. They do a couple of thousand heart surgeries a year with a dedicated department for valve surgeries. The high volume results in high expertise. However, they move you through with efficiency. They treated us with respect but we did not make any new friends there. OTOH, there is probably not anything that they have not seen before and are not prepared to deal with.

HTH
Wow - thanks - for the invaluable information. CC is high on my list! I’ve scheduled a 2nd opinion with Doctor David Adams at Mt. Sinai in NYC. He’s got a great reputation and is very pro repair vs replacement in mitral valve prolapse situations. If I don’t like what he says, CC will be my next stop! They sound amazing and I love the visitation policies. My husband would go nuts at 11 days in an unknown city (especially if the neighborhood is dicey).
 

Joan L.

Member
Joined
Mar 20, 2022
Messages
11
Wow - thanks - for the invaluable information. CC is high on my list! I’ve scheduled a 2nd opinion with Doctor David Adams at Mt. Sinai in NYC. He’s got a great reputation and is very pro repair vs replacement in mitral valve prolapse situations. If I don’t like what he says, CC will be my next stop! They sound amazing and I love the visitation policies. My husband would go nuts at 11 days in an unknown city (especially if the neighborhood is dicey).
Plus - convenience-wise, I could stay with my son who lives in Brooklyn.
 

MdaPA

Well-known member
Joined
Jul 8, 2020
Messages
245
Screen Shot 2022-03-21 at 7.46.04 PM.png


Not sure, didn't even notice until you pointed it out. Perhaps Carolinemc has an issue with CC or maybe she selected the wrong emoji?
 

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