New member.severe mitral stenosis and severe mitral regurgitation

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Angel8642

VR.org Supporter
Joined
May 3, 2022
Messages
4
Hi everyone,

Just joined. I have been reading for awhile many of the comments here and finally decided to make a post about my situation.
Diagnosed with severe mitral valve stenosis in 2018. Surgery via balloon to repair was done. Last year I was told it was getting bad with stenosis again and now regurgitating moderately. Decided to try same procedure ballon to avoid open heart surgery which now made the regurgitation Severe and stenosis severe. I have been Asymptomatic entire time. I'm currently training, lifting weights and still feel nothing. Cardiologist insists I need to replace the valve, with mechanical and be on anticoagulation meds rest of my life or tissue with potentially no meds but would have to redo surgery as the valve can degenerate quicker in younger patients. Quite tough to make a decision considering I'm still symptom free. My concern is would I feel better after surgery, vs how I feel now with no symptoms. Part of me wants to hold off on surgery but I'm also told if I wait there could be damage to the heart .... This all feels like dream... More like a nightmare really
 

TGM

Member
Joined
May 1, 2022
Messages
17
Welcome and so sorry that you are going through this. I am not a patient but the parent of a 19 year old with 2 prosthetic valves, one of which is a mechanical valve in the mitral position. Most would suggest that you go forward with the surgery while you are healthy as there is more likelihood of complications once you become symptomatic. If you are having doubts, you might consider a second opinion. Best wishes!
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
10,073
Location
Queensland, OzTrayLeeYa
Hi and welcome

My concern is would I feel better after surgery, vs how I feel now with no symptoms
well firstly I think you should have posted this entire thing in new member introductions where it won't be missed. However to the point the issue is this: with no symptoms it only means that your body is currently accommodating to the situation, which will likely not get better. If you wait till you feel harmed by it then not only will you have to recover from surgery, you'll have to recover from that further harm that is occurring.

I agree that valve surgery (even for me) is no cake party, but pretty soon you find its in the rear view mirror and all you are doing then is managing the new valve.

Ultimately what's behind you is then no longer important

Best Wishes
 

dornole

Well-known member
Joined
Jan 5, 2014
Messages
817
Location
Minnesota, US
Hi there, I had the same balloon thing done almost 20 years ago, with severe mitral stenosis, which knocked the stenosis back to moderate and gave me moderate regurgitation (cardiologist said it's typical for regurgitation to get a notch worse after this repair.) Unlike you I definitely had symptoms beforehand - inability to get up a flight of stairs without resting, couldn't breathe if lying flat in a bed and had to sleep in a recliner, dry coughing up quarter-size splats of blood). I was pregnant with twins which put additional stress on the stenotic mitral valve. So hell yeah I felt better afterward, with the added bonus of nobody being dead (not me, not the twins). FYI I was 34 at the time of the balloon and 54 now.

I've been lucky so far and deterioration of the valve has been slow since then. 20 years out, I now have mod-severe stenosis and mod-severe regurgitation, asymptomatic, still not proceeding to a repeat valvuloplasty or MVR. I do get an echo yearly to check out my heart, a couple times it's been every 6 months if they didn't like a trend. Yes, if you wait too long for VR, the left ventricle can become damaged due to the mitral valve dysfunction and this damage is irreversible and deadly. My husband's work friend with mitral valve problems died of this at age 61 after skipping her echos because she felt fine. By the time she had symptoms the damage was done. That's one of the things they look for in that echo, ANY sign of LV problems. For sure you can be asymptomatic and still need surgery, for that reason.

If you are severe for both stenosis and regurgitation, I can see why your cardio is pushing for surgery as that left ventricle damage could be imminent. Are they seeing any signs of LV damage / enlargement yet? Have they done a TEE (echo done down your throat for a better view of the heart) to confirm your stats? I've had TEEs a couple of times over the years when they were concerned, and the better data caused them to keep monitoring.

That said I wouldn't screw around with this and delay surgery if your tests are accurate. It looks like you are one of those people who is super good at crudding up your heart valve (the younger you are, the more likely that is -- other risk factors include being female and rheumatic heart disease history, but I think there's a lot of individual variation as well). So if I were you and needed VR, I'd take your doc's recommendation and get a nice impervious mechanical valve that my young, strong and vigilant body can't attack like it can tissue. You don't want to be doing OHS again in 4 years. And if you stayed on that rapid deterioration schedule, you'd end up getting a mechanical anyways next time. They can't do surgery over and over and over and over every few years, not unless there's no other option. Too dangerous from scar tissue, etc.

Sucks! It's hard to be young (how old are you anyway?) and dealing with this stuff. But on the bright side VR can greatly extend your lifespan, and there are tons of experienced folks on here to help you with the anticoagulant management if you need a mechanical. Seems like after a while it's like brushing your teeth. Several very active fitness nuts are on here too.

Hope this helps a bit.
 

Angel8642

VR.org Supporter
Joined
May 3, 2022
Messages
4
Hi there, I had the same balloon thing done almost 20 years ago, with severe mitral stenosis, which knocked the stenosis back to moderate and gave me moderate regurgitation (cardiologist said it's typical for regurgitation to get a notch worse after this repair.) Unlike you I definitely had symptoms beforehand - inability to get up a flight of stairs without resting, couldn't breathe if lying flat in a bed and had to sleep in a recliner, dry coughing up quarter-size splats of blood). I was pregnant with twins which put additional stress on the stenotic mitral valve. So hell yeah I felt better afterward, with the added bonus of nobody being dead (not me, not the twins). FYI I was 34 at the time of the balloon and 54 now.

I've been lucky so far and deterioration of the valve has been slow since then. 20 years out, I now have mod-severe stenosis and mod-severe regurgitation, asymptomatic, still not proceeding to a repeat valvuloplasty or MVR. I do get an echo yearly to check out my heart, a couple times it's been every 6 months if they didn't like a trend. Yes, if you wait too long for VR, the left ventricle can become damaged due to the mitral valve dysfunction and this damage is irreversible and deadly. My husband's work friend with mitral valve problems died of this at age 61 after skipping her echos because she felt fine. By the time she had symptoms the damage was done. That's one of the things they look for in that echo, ANY sign of LV problems. For sure you can be asymptomatic and still need surgery, for that reason.

If you are severe for both stenosis and regurgitation, I can see why your cardio is pushing for surgery as that left ventricle damage could be imminent. Are they seeing any signs of LV damage / enlargement yet? Have they done a TEE (echo done down your throat for a better view of the heart) to confirm your stats? I've had TEEs a couple of times over the years when they were concerned, and the better data caused them to keep monitoring.

That said I wouldn't screw around with this and delay surgery if your tests are accurate. It looks like you are one of those people who is super good at crudding up your heart valve (the younger you are, the more likely that is -- other risk factors include being female and rheumatic heart disease history, but I think there's a lot of individual variation as well). So if I were you and needed VR, I'd take your doc's recommendation and get a nice impervious mechanical valve that my young, strong and vigilant body can't attack like it can tissue. You don't want to be doing OHS again in 4 years. And if you stayed on that rapid deterioration schedule, you'd end up getting a mechanical anyways next time. They can't do surgery over and over and over and over every few years, not unless there's no other option. Too dangerous from scar tissue, etc.

Sucks! It's hard to be young (how old are you anyway?) and dealing with this stuff. But on the bright side VR can greatly extend your lifespan, and there are tons of experienced folks on here to help you with the anticoagulant management if you need a mechanical. Seems like after a while it's like brushing your teeth. Several very active fitness nuts are on here too.

Hope this helps a bit.
Hi and thanks for the reply.
I am 39 yrs now. I don't have any signs of LV damage nor any signs of enlargement. I have decided to go to Cleveland clinic with Lars Svenson in June and see what he has to say. He will repeat several testing to see what he finds. I am told that due to my age and the valve being on the mitral position it might not last me very long if I go tissue, and a mechanical valve is recommended unless I want to do another surgery later on. If I go mech I will just have to learn to live with it and manage my INR. Perhaps it's not as bad as I'm seeing it? It's interesting though how the mitral position degenerates faster in younger patients and also requires a higher INR. What a pain. At the end of the day I must make a decision and once I speak to the doctor I'll be able to have a better understanding and take it from there. I have ran from this for quite sometime, it's time to turn page and put this behind. Can't be having this in my mind every day

Thanks,
Angel
 

Angel8642

VR.org Supporter
Joined
May 3, 2022
Messages
4
Hi everyone,

Just joined. I have been reading for awhile many of the comments here and finally decided to make a post about my situation.
Diagnosed with severe mitral valve stenosis in 2018. Surgery via balloon to repair was done. Last year I was told it was getting bad with stenosis again and now regurgitating moderately. Decided to try same procedure ballon to avoid open heart surgery which now made the regurgitation Severe and stenosis severe. I have been Asymptomatic entire time. I'm currently training, lifting weights and still feel nothing. Cardiologist insists I need to replace the valve, with mechanical and be on anticoagulation meds rest of my life or tissue with potentially no meds but would have to redo surgery as the valve can degenerate quicker in younger patients. Quite tough to make a decision considering I'm still symptom free. My concern is would I feel better after surgery, vs how I feel now with no symptoms. Part of me wants to hold off on surgery but I'm also told if I wait there could be damage to the heart .... This all feels like dream... More like a nightmare really


Hi and welcome



well firstly I think you should have posted this entire thing in new member introductions where it won't be missed. However to the point the issue is this: with no symptoms it only means that your body is currently accommodating to the situation, which will likely not get better. If you wait till you feel harmed by it then not only will you have to recover from surgery, you'll have to recover from that further harm that is occurring.

I agree that valve surgery (even for me) is no cake party, but pretty soon you find its in the rear view mirror and all you are doing then is managing the new valve.

Ultimately what's behind you is then no longer important

Best Wishes
Thanks for the reply 😃. I could swear this is posted under new membes and introductions.
 

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Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,574
Welcome to the forum.

Sorry to hear about the severe regurgitation and severe stenosis. The good news is that if you take the recommendation of your cardiologist and go mechanical, you will likely be one and done and not have to revisit the issue down the road.

Part of me wants to hold off on surgery but I'm also told if I wait there could be damage to the heart ....
I know exactly what you mean. This is where I was, although my issue was with the aortic valve- aortic stenosis. Even when it became severe, I had no symptoms and could still box 10 sparring rounds with guys in their 20s. I was told I could get surgery very soon or wait for symptoms. Ultimately, I decided to get the surgery soon, rather than wait for symptoms. Your cardiologist is telling you that if you wait that there could be damage to your heart and this is correct.

Once you begin to experience symptoms, it is usually due to the fact that the structural adaptions that your heart has made from the regurgitation and stenosis are now making it more difficult to get enough blood circulated, leading to chest pains, shortness of breath and light headedness, even fainting. When you get the surgery, if you are fortunate, these structural adaptions will reverse back to normal dimensions. But they may not reverse and if they do reverse, they may not reverse all the way to your normal baseline. This is not good for the long term. A heart with thickened walls is more susceptible to heart attack.

For me, when I thought about the big picture, I could not come up with any good reason to wait. This was especially true since I was going mechanical and it would be my first and, likely, last surgery. At age 53 I was looking at potentially 25 to 40 more years of life ahead of me. In the big picture, what difference would it make if I got surgery now or waited 3-6 months, risking permanent damage? Ultimately, I wanted to get on with it, get it over with, so that I could get on with my recovery and not look back.

At age 39, your cardiologist is right that you will likely go through a tissue valve quickly. You will need another operation- really several more operations if you keep going tissue. And this will, unfortunately, affect your life expectancy. We can handle one valve surgery pretty well. With each additional procedure the risks increase due to the build up of scar tissue, creating short term and long term potential issues. So, I would strongly encourage you to take the advice of your cardiologist and go mechanical and also to get it now as he is suggesting.

I have decided to go to Cleveland clinic with Lars Svenson in June and see what he has to say
Many here on the forum have had their surgeries perfomed by Lars. I've heard nothing but good things about him. You're going with one of the most respected surgeons at the #1 ranked valve surgery center in the country. I believe it is safe to say that you will be in very good hands.

If I go mech I will just have to learn to live with it and manage my INR.
I've been on warfarin and been managing my INR since my surgery 14 months ago. It is not a big deal and you can have a very active live. I returned to Brazilian Jiu Jitsu 14 weeks ago and this morning trained for 90 minutes, which included live sparring with some very competitive folks. Tonight I taught class and sparred with my students after technique teaching. The only thing that I've given up is the boxing, as punches to the head are not a good idea on warfarin. Other than that, my activities are the same as before I was on anticoagulation. You will be able to continue your active lifestyle after you recover from surgery. If anyone tells you otherwise, get a second opinion.

Best of luck in the choices ahead and please keep us posted.
 

dornole

Well-known member
Joined
Jan 5, 2014
Messages
817
Location
Minnesota, US
You are right that mitral degenerates faster - you seem like a classic for a mechanical. Good luck at the Cleveland Clinic! I hope you find a course of treatment that you are confident in.
 

sharky7

Well-known member
Joined
Mar 17, 2015
Messages
92
Location
SOUTH FLORIDA
Many here on the forum have had their surgeries performed by Lars. I've heard nothing but good things about him. You're going with one of the most respected surgeons at the #1 ranked valve surgery center in the country. I believe it is safe to say that you will be in very good hands.
First open heart was done up in CLEVELAND,OHIO and now it has been a few years. You said something about hearing nothing but good things about Lars, QUESTION a few years back and in the Cleveland clinic up in Ohio. The major heart surgeon up there was a Doctor by the name of Dr. Cosgrove either you or anyone here ever hear of him? right now am just wondering.
 

d333gs

Well-known member
Joined
Feb 20, 2018
Messages
197
Location
France
Hi everyone,

Just joined. I have been reading for awhile many of the comments here and finally decided to make a post about my situation.
Diagnosed with severe mitral valve stenosis in 2018. Surgery via balloon to repair was done. Last year I was told it was getting bad with stenosis again and now regurgitating moderately. Decided to try same procedure ballon to avoid open heart surgery which now made the regurgitation Severe and stenosis severe. I have been Asymptomatic entire time. I'm currently training, lifting weights and still feel nothing. Cardiologist insists I need to replace the valve, with mechanical and be on anticoagulation meds rest of my life or tissue with potentially no meds but would have to redo surgery as the valve can degenerate quicker in younger patients. Quite tough to make a decision considering I'm still symptom free. My concern is would I feel better after surgery, vs how I feel now with no symptoms. Part of me wants to hold off on surgery but I'm also told if I wait there could be damage to the heart .... This all feels like dream... More like a nightmare really
 

d333gs

Well-known member
Joined
Feb 20, 2018
Messages
197
Location
France
Hi Angle
Welcome!
I had an Aortic valve replacement this past Feb. I biked a lot and I felt I had no symptoms and thought I was doing just fine but the numbers were bad so I had the operation. Three months later I was amazed at my bike performance improvement, I feel like I have been hot-rodded!
 

MdaPA

Well-known member
Joined
Jul 8, 2020
Messages
265
First open heart was done up in CLEVELAND,OHIO and now it has been a few years. You said something about hearing nothing but good things about Lars, QUESTION a few years back and in the Cleveland clinic up in Ohio. The major heart surgeon up there was a Doctor by the name of Dr. Cosgrove either you or anyone here ever hear of him? right now am just wondering.
Dr. Cosgrove, after being a great surgeon, become CEO of Cleveland Clinic. He then retired from being CEO a few years ago.
Toby Cosgrove, M.D., Announces His Decision to Transition from President, CEO Role

Dr. Cosgrove replaced my wife's MV with a bovine valve back in 2000. When trying to decide between going with a mechanical or a tissue valve, he said, "If it was me having to decide between tissue or mechanical, I would rather have a mechanical problem than a medical problem" - meaning he would rather have a mechanical issue with a tissue valve that can he can deal with/fix in isolation than introduce other potential medical problems throughout the body as a result from being on lifetime anti-coagulation therapy with a mechanical valve (e.g. increase bleeding risk from surgeries/ falls/accidents, blood clots, diet restrictions/interactions, bridging for surgery/procedures, etc).
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,574
The major heart surgeon up there was a Doctor by the name of Dr. Cosgrove either you or anyone here ever hear of him?
Hi Sharky,

I've heard of Dr. Cosgrove, but don't have any personal experience with him.
 

Angel8642

VR.org Supporter
Joined
May 3, 2022
Messages
4
Welcome to the forum.

Sorry to hear about the severe regurgitation and severe stenosis. The good news is that if you take the recommendation of your cardiologist and go mechanical, you will likely be one and done and not have to revisit the issue down the road.



I know exactly what you mean. This is where I was, although my issue was with the aortic valve- aortic stenosis. Even when it became severe, I had no symptoms and could still box 10 sparring rounds with guys in their 20s. I was told I could get surgery very soon or wait for symptoms. Ultimately, I decided to get the surgery soon, rather than wait for symptoms. Your cardiologist is telling you that if you wait that there could be damage to your heart and this is correct.

Once you begin to experience symptoms, it is usually due to the fact that the structural adaptions that your heart has made from the regurgitation and stenosis are now making it more difficult to get enough blood circulated, leading to chest pains, shortness of breath and light headedness, even fainting. When you get the surgery, if you are fortunate, these structural adaptions will reverse back to normal dimensions. But they may not reverse and if they do reverse, they may not reverse all the way to your normal baseline. This is not good for the long term. A heart with thickened walls is more susceptible to heart attack.

For me, when I thought about the big picture, I could not come up with any good reason to wait. This was especially true since I was going mechanical and it would be my first and, likely, last surgery. At age 53 I was looking at potentially 25 to 40 more years of life ahead of me. In the big picture, what difference would it make if I got surgery now or waited 3-6 months, risking permanent damage? Ultimately, I wanted to get on with it, get it over with, so that I could get on with my recovery and not look back.

At age 39, your cardiologist is right that you will likely go through a tissue valve quickly. You will need another operation- really several more operations if you keep going tissue. And this will, unfortunately, affect your life expectancy. We can handle one valve surgery pretty well. With each additional procedure the risks increase due to the build up of scar tissue, creating short term and long term potential issues. So, I would strongly encourage you to take the advice of your cardiologist and go mechanical and also to get it now as he is suggesting.



Many here on the forum have had their surgeries perfomed by Lars. I've heard nothing but good things about him. You're going with one of the most respected surgeons at the #1 ranked valve surgery center in the country. I believe it is safe to say that you will be in very good hands.



I've been on warfarin and been managing my INR since my surgery 14 months ago. It is not a big deal and you can have a very active live. I returned to Brazilian Jiu Jitsu 14 weeks ago and this morning trained for 90 minutes, which included live sparring with some very competitive folks. Tonight I taught class and sparred with my students after technique teaching. The only thing that I've given up is the boxing, as punches to the head are not a good idea on warfarin. Other than that, my activities are the same as before I was on anticoagulation. You will be able to continue your active lifestyle after you recover from surgery. If anyone tells you otherwise, get a second opinion.

Best of luck in the choices ahead and please keep us posted.
To update all. My surgery date is set for July 29th. After speaking to Lars Svenson he recommended mechanical as a mitral tissue will probably last anywhere between 6 yrs or less at my age and due to it being on the mitral position which degenerates faster.
We discused on-x mitral valve and ST Jude mechanical valve and decided to go with st jude. He also said st jude has a longer record and ON-X mechanical in the mitral position is quite bulky and more difficult to implant. He's quite surprised I still show no symptoms with the severity of the regurgitation. He said it's practicality wide opened mitral valve and I need surgery sooner than later. My most recent echo shows the following:
The right ventricle is dilated. Right ventricular systolic function is mildly
decreased.
The left atrial cavity is dilated.
- There is severe (4+) holosystolic mitral valve regurgitation likely related to
rheumatic valve disease. Regurgitant orifice area (PISA) is 0.72 cm². There is
severe mitral stenosis caused by restricted opening and doming. MV area is 0.50
cm² (0.24 cm²/m²) by 3D. The peak gradient is 38 mmHg and the mean gradient is 21
mmHg. HR at 81bpm.
- There is systolic flattening consistent with RV pressure overload.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
1,574
To update all. My surgery date is set for July 29th. After speaking to Lars Svenson he recommended mechanical as a mitral tissue will probably last anywhere between 6 yrs or less at my age and due to it being on the mitral position which degenerates faster.
We discused on-x mitral valve and ST Jude mechanical valve and decided to go with st jude. He also said st jude has a longer record and ON-X mechanical in the mitral position is quite bulky and more difficult to implant. He's quite surprised I still show no symptoms with the severity of the regurgitation. He said it's practicality wide opened mitral valve and I need surgery sooner than later. My most recent echo shows the following:
The right ventricle is dilated. Right ventricular systolic function is mildly
decreased.
The left atrial cavity is dilated.
- There is severe (4+) holosystolic mitral valve regurgitation likely related to
rheumatic valve disease. Regurgitant orifice area (PISA) is 0.72 cm². There is
severe mitral stenosis caused by restricted opening and doming. MV area is 0.50
cm² (0.24 cm²/m²) by 3D. The peak gradient is 38 mmHg and the mean gradient is 21
mmHg. HR at 81bpm.
- There is systolic flattening consistent with RV pressure overload.
Thanks for the update Angel. Glad that they have you scheduled. You're in very good hands.

Wishing you an uneventful procedure and speedy recovery.
 

dornole

Well-known member
Joined
Jan 5, 2014
Messages
817
Location
Minnesota, US
Holy crud, those mitral stenosis numbers (valve area and gradient) are worse than I ever had. Glad you're not suffering with symptoms! Glad you're on the schedule! Sounds like you have a strong plan in place. Wishing you the best.
 
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