Doctors, doctors and more doctors..and a Mitral Valve

[oldphd]

I'm a Dr., but not the kind that helps people.

DW's family has had a few people with mitral valve issues (some sort of genetic issue, presumably). Her brother had one replaced many years ago. Her nephew had a minimally invasive surgery done for his mitral valve repair several years ago at a young age (39 IIRC) and then needed another surgery done a year ago since that repair was not done well. That surgery was done via the standard sternotomy. He indicated recovery from both wasn't that different.

DW had her mitral valve repaired (complex repair and weren't sure it would be possible) just over a year ago. During the same procedure they also did a minor repair to the tricuspid valve and an ablation for afib. She also has a small amount of regurgitation in her aortic valve, but not enough to do anything. Had a sternotomy. She had/has an enlarged heart due to the decline over many years and inefficiency. Her condition has improved significantly since surgery.

So my comments. First, I was not aware there is any TA option for mitral valve as posted above. However, I had a discussion with her surgeon (who is a top guy, relatively young, and very into minimally invasive where appropriate). He told me the TA option for the aortic valve is for stenotic cases where the new valve can be screwed into the calcified tissues. Not for insufficiency/regurgitation. We discussed the mitral clip, but as indicated that was not a consideration for her since she could handle the major surgery. My understanding is those are used primarily for individuals who aren't major surgical candidates.

Having a surgeon you are comfortable with makes a huge difference. Being older and more experienced is not always a pro. Younger surgeons have more stamina and are more up on the current state of the art. We were fortunate to have a new guy in town who is well respected and highly recruited. For comparison, we were down to 3 names in the eastern US (2 at Cleveland Clinic and 1 in NY) that her regular cardiologist had given us prior to this guy moving to town. We've known for a few years that surgery was a when, not an if, so had been expecting to make a road trip. Can't say enough good things about him, both the job he did and his bed side manner. If you have any interest in his name please PM me.

If it was me, I'd probably get a second surgical opinion. As others have said, I offer you best wishes, it's no fun dealing with major health issues.

 

[aja8888]

I'm a Dr., but not the kind that helps people.

DW's family has had a few people with mitral valve issues (some sort of genetic issue, presumably). Her brother had one replaced many years ago. Her nephew had a minimally invasive surgery done for his mitral valve repair several years ago at a young age (39 IIRC) and then needed another surgery done a year ago since that repair was not done well. That surgery was done via the standard sternotomy. He indicated recovery from both wasn't that different.

DW had her mitral valve repaired (complex repair and weren't sure it would be possible) just over a year ago. During the same procedure they also did a minor repair to the tricuspid valve and an ablation for afib. She also has a small amount of regurgitation in her aortic valve, but not enough to do anything. Had a sternotomy. She had/has an enlarged heart due to the decline over many years and inefficiency. Her condition has improved significantly since surgery.

So my comments. First, I was not aware there is any TA option for mitral valve as posted above. However, I had a discussion with her surgeon (who is a top guy, relatively young, and very into minimally invasive where appropriate). He told me the TA option for the aortic valve is for stenotic cases where the new valve can be screwed into the calcified tissues. Not for insufficiency/regurgitation. We discussed the mitral clip, but as indicated that was not a consideration for her since she could handle the major surgery. My understanding is those are used primarily for individuals who aren't major surgical candidates.

Having a surgeon you are comfortable with makes a huge difference. Being older and more experienced is not always a pro. Younger surgeons have more stamina and are more up on the current state of the art. We were fortunate to have a new guy in town who is well respected and highly recruited. For comparison, we were down to 3 names in the eastern US (2 at Cleveland Clinic and 1 in NY) that her regular cardiologist had given us prior to this guy moving to town. We've known for a few years that surgery was a when, not an if, so had been expecting to make a road trip. Can't say enough good things about him, both the job he did and his bed side manner. If you have any interest in his name please PM me.

If it was me, I'd probably get a second surgical opinion. As others have said, I offer you best wishes, it's no fun dealing with major health issues.

Thanks for the history and information. DW may not even be a good candidate for minimally invasive surgery (keyhole) as she has pretty advanced COPD and severe osteoporosis. We will find that out when we have the next meeting with the doc that specializes in the keyhole technique. We are not even sure at this point if the valve can be repaired or if only a clip will be all that any surgeon can do at this stage of the game.

We are early into this as it started out being a concern when DW had a stress test last Fall. We have been dealing with her COPD and resultant osteoporosis as the major issues but it became clear that something else had surfaced when her stamina went way downhill.

We are in the information/knowledge gathering mode right now and this thread has helped immensely so far.

 

[Moemg]

So sorry to hear about all the medical issues . I wish you & your wife best wishes on dealing with everything .

 

[LRDave]

My 85-year-old father had a mitral valve repair 7 years ago. Standard chest crack. The surgeon was prepared to replace, but deemed it unnecessary. Before the surgery, life was unworkable for my dad and now 7 years later his cardio health is outstanding.


I wish the best for you and the Missus.

 

[aja8888]

My 85-year-old father had a mitral valve repair 7 years ago. Standard chest crack. The surgeon was prepared to replace, but deemed it unnecessary. Before the surgery, life was unworkable for my dad and now 7 years later his cardio health is outstanding.


I wish the best for you and the Missus.

Amazing! Glad to hear he is doing so well.

And thanks for the well wishes.

 

[NanoSour]

Just wanted to add my best wishes to you and the Mrs.

It's truly amazing what the modern surgeon is capable off.

 

[Meadbh]

It's truly amazing what the modern [-]surgeon[/-] surgical team is capable off.

FIFY

 

[bbbamI]

Oh my...another health issue. Y'all need a vacation....sipping pretty drinks with umbrellas in them.

Like some of the others, I have no experience with this type of situation (well ok, I know about the pretty drinks).

Best wishes to you both.

 

[Senator]

Anyone have experience on dealing with Mitral valve issues and what to expect? This is new ground for us and any words of wisdom or successes, etc would be appreciated. I know I can look this stuff up on the internet, but I don't believe half of what I see there.

My father had a brain stem stroke, and the stroke doctor said "Without even looking at the source of the blood clot, I would be 99% chance it came off the heart valve".

My father had a triple bypass and a heart valve replaced a few years before he had his permanently disabling stroke at ~71. He almost died, and was in intensive care for over a month. Then a nursing home for 5+ years.

Just know that there are more risks than the valve surgery.

 

[aja8888]

My father had a brain stem stroke, and the stroke doctor said "Without even looking at the source of the blood clot, I would be 99% chance it came off the heart valve".

My father had a triple bypass and a heart valve replaced a few years before he had his permanently disabling stroke at ~71. He almost died, and was in intensive care for over a month. Then a nursing home for 5+ years.

Just know that there are more risks than the valve surgery.

Yeah, thanks for the heads up. It seems like blood clots after surgery are the norm these days.

 

[ivinsfan]

My father had a brain stem stroke, and the stroke doctor said "Without even looking at the source of the blood clot, I would be 99% chance it came off the heart valve".

My father had a triple bypass and a heart valve replaced a few years before he had his permanently disabling stroke at ~71. He almost died, and was in intensive care for over a month. Then a nursing home for 5+ years.

Just know that there are more risks than the valve surgery.

If you end up with a replacement valve you will be on blood thinners forever and your blood must be checked regularly....most likely your Dad would have died without the surgery.

 

[Senator]

If you end up with a replacement valve you will be on blood thinners forever and your blood must be checked regularly....most likely your Dad would have died without the surgery.

Probably. He found out he needed a valve when he went to be part of a paid medical study. The study lasted six months. He did not make the cut for the study, as they did not think he would make it to the end.

He probably did things he should not have after the surgery, which may have impacted the blood thinners effectiveness.

 

[Koolau]

Good friend had chest cracked for valve replacement. He was out and about fairly quickly and he swore that the pain during recovery (and the recovery process) was not that big a deal. Not offering advice, just saying that one man's experience might vote for the more traditional method. I wish you the best of outcomes for your wife whatever choices you make with your doctors.

 

[bpgdeg1234]

Personal experience as it's been 22 months since my open heart triple valve "repair" surgery. I had severe mitral valve regurgitation, moderate aorta and mild tricuspid regurgitation. I went back-and-forth with going with the minimally invasive from the side approach to address only the mitral valve since the other two valves weren't severe but surgeons recommended at my mid-50s age that it would be best to get all of the valves addressed at one time or I'd very likely be back in 5 to 10 years for the others. The caveat though was that I couldn't go minimally invasive route and had to go the traditional breastbone cavity approach if addressing all my valve issues at once.

The median sternotomy operation lasted over 8.5 hours in total resulting in the addition of 9 artifical chordae to repair rather than replace the mitral valve, some cuts/stitches to sure up the aorta valve and an annulus ring installed in the tricuspid valve to bring its size back into the recommended AHA guidelines.

Recovery in my case was not that difficult but I did and still do have the complication of an increased resting heart rate. Being an avid runner for 20+ years my pre-op resting heart rate was in 50s but post-surgery remained in 80s/90s so I've been on Metoprolol Tartrate 100mg/day which I tolerate very well which has helped to get/keep my resting heart rate in the mid 60s and low 70s.

The increased resting heart rate complication has been indicated by a few cardiologists to potentially be associated with surgical cuts and/or scar tissue associated with the cutting of the parasympathetic nerves when repairing the mitral valve which help to slow the resting heart rate.

If the surgeon you meet with can perform the minimally invasive approach for your DWs case and she is a good candidate for it, I would recommend asking what "potential" complications are less likely to occur with minimally invasive versus the traditional cavity approach. These responses may help make your decision that much easier, especially if DW is not a good candidate for traditional in light of some of her pulmonary issues. Hopefully this information helps you in making your decision.

 

[Bamaman]

Yeah, you both really have our sympathy and good wishes.

What your wife and family really need is PRAYERS!! You've gott'em. Only God can guide you through such times.

 

[Bamaman]

Yeah, thanks for the heads up. It seems like blood clots after surgery are the norm these days.

And those blood clots can go to the brain, the heart, the lungs. or they can get down into your legs (phlebitis.) They're big disablers and in many cases killers.

My father was on hemodialysis, and about all most people have in that condition is 4 years. Dad and his brother both died of blood clots generated in the blood cleansing proces..

 

[aja8888]

Personal experience as it's been 22 months since my open heart triple valve "repair" surgery. I had severe mitral valve regurgitation, moderate aorta and mild tricuspid regurgitation. I went back-and-forth with going with the minimally invasive from the side approach to address only the mitral valve since the other two valves weren't severe but surgeons recommended at my mid-50s age that it would be best to get all of the valves addressed at one time or I'd very likely be back in 5 to 10 years for the others. The caveat though was that I couldn't go minimally invasive route and had to go the traditional breastbone cavity approach if addressing all my valve issues at once.

The median sternotomy operation lasted over 8.5 hours in total resulting in the addition of 9 artifical chordae to repair rather than replace the mitral valve, some cuts/stitches to sure up the aorta valve and an annulus ring installed in the tricuspid valve to bring its size back into the recommended AHA guidelines.

Recovery in my case was not that difficult but I did and still do have the complication of an increased resting heart rate. Being an avid runner for 20+ years my pre-op resting heart rate was in 50s but post-surgery remained in 80s/90s so I've been on Metoprolol Tartrate 100mg/day which I tolerate very well which has helped to get/keep my resting heart rate in the mid 60s and low 70s.

The increased resting heart rate complication has been indicated by a few cardiologists to potentially be associated with surgical cuts and/or scar tissue associated with the cutting of the parasympathetic nerves when repairing the mitral valve which help to slow the resting heart rate.

If the surgeon you meet with can perform the minimally invasive approach for your DWs case and she is a good candidate for it, I would recommend asking what "potential" complications are less likely to occur with minimally invasive versus the traditional cavity approach. These responses may help make your decision that much easier, especially if DW is not a good candidate for traditional in light of some of her pulmonary issues. Hopefully this information helps you in making your decision.

Thanks for explaining your surgery procedure and outcomes and the recommendation to ask the right questions. We will certainly do that. We meet with the surgeon next Thursday.

Today she had a pulmonary test and it was not good. Her pulmonologist was not supportive of the Mitral repair surgery due to her weakened conditions. Next week will be the decision as to what is the best course for a safe and predictable outcome.

And yes, Bamaman, we need those prayers. Thank you!

 

[ivinsfan]

Thanks for explaining your surgery procedure and outcomes and the recommendation to ask the right questions. We will certainly do that. We meet with the surgeon next Thursday.

Today she had a pulmonary test and it was not good. Her pulmonologist was not supportive of the Mitral repair surgery due to her weakened conditions. Next week will be the decision as to what is the best course for a safe and predictable outcome.

And yes, Bamaman, we need those prayers. Thank you!

Sorry to hear that, but let's hope the clip repair can improve her quality of life. It's been a godsend for people that can't tolerate regular surgery.

 

[lhamo]

Sorry you and your wife are having to deal with this.

My mom had a mitral valve replacement in 2002 at age 72. Open chest. They used a pig valve, and she had to be on Warfarin. The valve started failing in 2015 and eventually she was diagnosed with congestive heart failure. We met with a surgeon to discuss whether minimally invasive surgery was an option, but unfortunately she had too much scar tissue for him to be willing to attempt it -- he was willing to refer her to the guy who trained him (based in Miami), but mom didn't want to pursue that option. And she doesn't want to go through open heart surgery again. So now we are just managing symptoms as best we can and trying to keep her spirits up.

I hope you guys are able to find a solution, but if it turns out surgery continues to be unadvised then I would STRONGLY encourage you to speak with a palliative care specialist sooner rather than later. Often people leave this too late, thinking that palliative care =hospice, but really hospice is only part of what they can offer. Especially since she has COPD, she might benefit from small doses of morphine -- it helps open the airways. Our experience was that the palliative care folks are MUCH more helpful than mom's cardiologist -- they are more attentive, caring and focused on quality of life. The cardiologist is a "gotta fix it" type and continues to ask mom if she wants to try surgery even though she ruled that out over a year ago.

I hope this doesn't come across the wrong way -- obviously we are all hoping that there is some intervention that can be done to give you and your wife many more happy years together.

 

[aja8888]

Sorry you and your wife are having to deal with this.

My mom had a mitral valve replacement in 2002 at age 72. Open chest. They used a pig valve, and she had to be on Warfarin. The valve started failing in 2015 and eventually she was diagnosed with congestive heart failure. We met with a surgeon to discuss whether minimally invasive surgery was an option, but unfortunately she had too much scar tissue for him to be willing to attempt it -- he was willing to refer her to the guy who trained him (based in Miami), but mom didn't want to pursue that option. And she doesn't want to go through open heart surgery again. So now we are just managing symptoms as best we can and trying to keep her spirits up.

I hope you guys are able to find a solution, but if it turns out surgery continues to be unadvised then I would STRONGLY encourage you to speak with a palliative care specialist sooner rather than later. Often people leave this too late, thinking that palliative care =hospice, but really hospice is only part of what they can offer. Especially since she has COPD, she might benefit from small doses of morphine -- it helps open the airways. Our experience was that the palliative care folks are MUCH more helpful than mom's cardiologist -- they are more attentive, caring and focused on quality of life. The cardiologist is a "gotta fix it" type and continues to ask mom if she wants to try surgery even though she ruled that out over a year ago.

I hope this doesn't come across the wrong way -- obviously we are all hoping that there is some intervention that can be done to give you and your wife many more happy years together.

Sorry to hear your mom's condition is where it is. We will know more this coming Thursday when we meet with the surgeon. And thanks for the idea about the palliative care alternative. Morphine may be in her future since steroids are no longer going to be prescribed.

 

[NW-Bound]

I don't have any knowledge or experience in this medical condition to add, so just want to wish Aja and his wife well. I hope the new doctor will find some suitable treatments.