MV regurgitation with prolapse

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jmb1997

Active member
Joined
May 27, 2022
Messages
27
Location
Boston, MA, USA
I talked to a few surgeons, so far they proposed 3 different methods of surgery:
a) sternotomy (open breast bone 2 inch , one of them said 3 inch)
b) minimally invasive robotics (5 holes on the right side of the chest)
c) minimal lateral thoracotomy (3 inch cut under right nipple and a hole in groin)

Some of the doctors promised 99% chance of repair one of them said 95% .
Most of them said they have 99.5 % odds of not killing me during surgery

1) Is there a way to validate their stats?
On Sts database the stats are per hospital not per doctor

2) it seems like option a has 3 months healing time , b and c have 4-6 weeks, leaning toward b, anyone has experience with b or c?

3) Any good Robotics surgeon in NorthEast?

Other thing i am curious :
They all say I will be very tired during recovery so I cant spend 8 hrs before completing recovery time

4) I work on computers , no physical activity needed, anyone was able to work 8 hrs earlier than the expected recovery time?

I did minimally invasive right thoracic repair at Brigham & Women's Hospital in Boston. I spoke to my surgeon about robotic surgery and he said if I wanted to do it then he'd refer me to his friend who does them at Yale, because it's the only place in New England that does it that way currently. I opted for right thoracic as the outcome seemed about the same and the possibly slightly shorter recovery with robotics didn't seem worth the two way travel and hotel time for me and my wife and our family.

Try and look up your surgeon online and read reviews, figure out their experience, ask lots of questions, etc. Read about the hospital, too. If they're trained to do minimally invasive surgery, they should be good at it! But if you research this topic a lot then you will know a line of BS. I met with one surgeon who does sternotomy and he told me recovery was significantly faster than minimally invasive and that people only get the latter after being suckered in by marketing. I also met one minimally invasive surgeon who worried me because he was talking about having a way longer recovery time that was twice as long as the literature said, so I wondered how good he was and didn't go with him either.

Your recovery will be highly dependent on what shape you are in going into surgery. My leaky mitral valve was genetic (I saw two geneticists who declared I have no named condition but just got a mix of genes that caused this). I am in my late 40s and am in good shape otherwise. I have a great BMI, all good cholesterol numbers, I exercise a lot, my average BP was 110/70 before surgery, etc. Four days before my surgery they took a slew of blood from me and tested me for 42 things and all came back in range. Once the drainage tubes came out less than 72 hours after surgery I was "normal" for every day activities for about 75% of the day, and a bit sluggish the rest of the time. But do not push yourself or you can very likely derail your recovery. I relaxed and listened to podcasts, watched some movies, took progressively faster paced walks, etc. Get yourself into the best shape you can get into before surgery and it should help your recovery.

Don't baby yourself either in recovery and relax too much, as you don't want to hamper your recovery. You should know what feels right. Also, know that even if you have a day where you feel great, the very next day you just might be a little off so expect some downs with the ups.

I have generous leave time at my work, so I took six weeks off (I was offered way more), though I could have returned earlier. I wouldn't push that either. One thing I noticed is that my eyes were more sensitive to strain after looking at a monitor or TV, so that was another reason I didn't want to rush back to work (I'm a remote working white collar employee and spend a good amount of each day on my computer).

Having eyes that were more sensitive to eye strain lasted about four weeks and then I felt okay. I took another two weeks of leave though, because why not? :)
 
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Geofd

Well-known member
Joined
Jul 4, 2021
Messages
55
Location
Framingham Massachusetts
Hello I have minimally evasive surgery at mass general in Boston, they went thru my ribs on my right side, I was on a heart and lung machine, they deflated my lung to get to the mitral valve they sewed a rubber ring onto the valve,I have a 3" or so scar under my arm on my rib cage,and a coue of puncture marks also recovery was 3 months, I was walking with help the next day,I have a very physically demanding job and haven't lost a step it was a great experience
 

MartinF

Well-known member
Joined
Jul 10, 2016
Messages
222
Location
Southern California USA
I had minimally invasive surgery for my mitral valve almost 10 years ago in Southern California. The surgeon went thru my ribs on the right side below my pec. The scar is hardly noticeable, but I do have occasional pain still. He tried to repair but it only lasted about 45 seconds. Luckily I was still in the operating table, so he started over and replaced the valve. Long surgery due to this.
My recovery was about 8 weeks before the weak feeling went away, but mostly due to blood loss (2 pints). It took a while to generate the blood. I walked every day, lengthening the time out. I stayed out of work for 12 weeks just to make sure I didn't wear myself down while trying to recover. It is a major surgery.
I find it interesting that I read about mitral valve failures, but I never read about what caused the failure. Is there only one cause? Maybe different causes have different surgical procedures that work. I was a semiconductor failure analysis engineer, so I look at it from this experience.
Good luck with your decision.
Martin
 

oztrek

Member
Joined
Jun 12, 2022
Messages
7
Location
nj
Hello I have minimally evasive surgery at mass general in Boston, they went thru my ribs on my right side, I was on a heart and lung machine, they deflated my lung to get to the mitral valve they sewed a rubber ring onto the valve,I have a 3" or so scar under my arm on my rib cage,and a coue of puncture marks also recovery was 3 months, I was walking with help the next day,I have a very physically demanding job and haven't lost a step it was a great experienc it take 3 months to recover
Hello I have minimally evasive surgery at mass general in Boston, they went thru my ribs on my right side, I was on a heart and lung machine, they deflated my lung to get to the mitral valve they sewed a rubber ring onto the valve,I have a 3" or so scar under my arm on my rib cage,and a coue of puncture marks also recovery was 3 months, I was walking with help the next day,I have a very physically demanding job and haven't lost a step it was a great experience
Do you mean if your job didt require heavy physical activity you would have considered yourself recovered in a month ?
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
10,278
Location
Queensland, OzTrayLeeYa
I find it interesting that I read about mitral valve failures, but I never read about what caused the failure. Is there only one cause?
me too, but not just restricted to valves, I'm always interested in any failures of stuff. I've also never been able to get at the "cause" (or perhaps better to use aetiology... ) as that doesn't seem to rate a mention. Seems they're quite pragmatic and are only interested in the solutions.
 

Zoltania

VR.org Supporter
Supporting Member
Joined
Feb 16, 2015
Messages
237
Location
SF Bay Area, California
I had the minimally invasive mitral valve repair surgery (non-robotic) seven years ago. My understanding is that minimally invasive surgery is pretty much the standard of care for this operation and you shouldn't need a specialty clinic, just an experienced surgeon who has done a lot of these procedures.

I found that the surgery really wiped me out for a while and it took some time for my energy level to get back to normal. I took the recommended three months off work but probably could have gone back part-time sooner. By the six-month mark my energy level was back to 100%.
 

oztrek

Member
Joined
Jun 12, 2022
Messages
7
Location
nj
I did minimally invasive right thoracic repair at Brigham & Women's Hospital in Boston. I spoke to my surgeon about robotic surgery and he said if I wanted to do it then he'd refer me to his friend who does them at Yale, because it's the only place in New England that does it that way currently. I opted for right thoracic as the outcome seemed about the same and the possibly slightly shorter recovery with robotics didn't seem worth the two way travel and hotel time for me and my wife and our family.

Try and look up your surgeon online and read reviews, figure out their experience, ask lots of questions, etc. Read about the hospital, too. If they're trained to do minimally invasive surgery, they should be good at it! But if you research this topic a lot then you will know a line of BS. I met with one surgeon who does sternotomy and he told me recovery was significantly faster than minimally invasive and that people only get the latter after being suckered in by marketing. I also met one minimally invasive surgeon who worried me because he was talking about having a way longer recovery time that was twice as long as the literature said, so I wondered how good he was and didn't go with him either.

Your recovery will be highly dependent on what shape you are in going into surgery. My leaky mitral valve was genetic (I saw two geneticists who declared I have no named condition but just got a mix of genes that caused this). I am in my late 40s and am in good shape otherwise. I have a great BMI, all good cholesterol numbers, I exercise a lot, my average BP was 110/70 before surgery, etc. Four days before my surgery they took a slew of blood from me and tested me for 42 things and all came back in range. Once the drainage tubes came out less than 72 hours after surgery I was "normal" for every day activities for about 75% of the day, and a bit sluggish the rest of the time. But do not push yourself or you can very likely derail your recovery. I relaxed and listened to podcasts, watched some movies, took progressively faster paced walks, etc. Get yourself into the best shape you can get into before surgery and it should help your recovery.

Don't baby yourself either in recovery and relax too much, as you don't want to hamper your recovery. You should know what feels right. Also, know that even if you have a day where you feel great, the very next day you just might be a little off so expect some downs with the ups.

I have generous leave time at my work, so I took six weeks off (I was offered way more), though I could have returned earlier. I wouldn't push that either. One thing I noticed is that my eyes were more sensitive to strain after looking at a monitor or TV, so that was another reason I didn't want to rush back to work (I'm a remote working white collar employee and spend a good amount of each day on my computer).

Having eyes that were more sensitive to eye strain lasted about four weeks and then I felt okay. I took another two weeks of leave though, because why not? :)
No, Dr still would have wanted 3 months
How old are you
I had the minimally invasive mitral valve repair surgery (non-robotic) seven years ago. My understanding is that minimally invasive surgery is pretty much the standard of care for this operation and you shouldn't need a specialty clinic, just an experienced surgeon who has done a lot of these procedures.

I found that the surgery really wiped me out for a while and it took some time for my energy level to get back to normal. I took the recommended three months off work but probably could have gone back part-time sooner. By the six-month mark my energy level was back to 100%.
so was that a cut in the middle of the chest or under nipple?
 
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ejc61

Well-known member
Joined
Jun 24, 2010
Messages
288
Location
Atlanta, GA
Hello Oztrek,
Your situation was similar to mine at that age as I had surgery at 47 yo. You have gotten alot of testing done and that's good. I went a few years with mod regurg. No symptoms. Once my LA reached the 4.0 cm mark, he said it's time. So I had a robotic repair. (Option b). It was a posterior repair, flailing leaflets, ring, etc. In on Thursday, out on Sunday. First surgery ever. I was pretty happy with it. One thing I found out just recently, which doesn't change the neccessity of surgery, is the possibility of getting aFib down the road. Apparently surgery puts you more at risk. As far as the procedure, I had a choice of the right thoracotomy or the robotic although they would be with different surgeons. I was comfortable with both, although I changed my mind the week before. I don't recommend doing that in terms of stress. I would not consider the open (option a). You will probably need a heart cath done at a time before the surgery to make sure there are not other things going on with your arteries, etc. You don't want a surprise during the surgery. You will have a discussion with the surgeon about what type of valve, tissue or mechanical, in case the repair can't be done. At the 13 year mark, my regurgitation has been stable at mild-mod. There will probably always be some regurg over time. As far as recovery, I had a finance desk job, so I went back in 3 weeks although it was alittle bit of a struggle more from brain fog and thinking was slower. Have you looked at NYU-Langone? They are supposed to have a pretty good robotics program and program in general.
 
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