Mitral valve RE-repair questions

[Iggy]

Went in to see my cardiologist this week to discuss the echo results 8 months after surgery. The valve is leaking just as much as it was prior to surgery. The doc said that surgery failed somewhat completely. And here I am with a new round of TEE and surgery coming at the end of the year probably.
I'm very stressed out about this whole situation, we had just started getting back to normal life after the surgery, and now it's a second round of reliving it, even though my recovery has been great, I think. I'm most concerned about the fact that the surgeon has altered the valve leaflets and that would decrease my chance for it to be repaired. We were reassured and guaranteed a lifetime lasting result after surgery, and it's been less than a year. I have been symptomatic, but again was told that overall stamina and endurance would improve by a lot, which I was most excited about getting back to working out. Never happened. Now I'm just allowed to walk and even stopped working, since I could not keep up physically.
1. Since my first repair failed, does it mean I would have a mitral valve replacement this time around? I hope for a repair, since I'm in mid-thirties and have had a history of GI ulcer/bleed, so, I assume, in case of replacement, I would be left with no options, but a tissue valve? (should stay away from blood thinners)? Or I'm wrong? In my case, I had a complex mitral valve repair with St. Jude Tailor 35-mm annuloplasty band. As the surgeon said, I must have had endocarditis since they found a significant hole in a leaflet.
2. How to choose a surgeon this time, since we thought we had picked the best one who we really liked and had such a bad outcome with?(we live in the bay area) I feel like we still know very little about this kind of surgeries and the only valve related, US-based doctor datebase/website I've found seems to be biased. Does anyone recommend a surgeon in the US specializing on mitral valve repairs?
3. I had a lower mini sternotomy and was thinking if it's worth considering robotic approach? IS there anything important that I should think of/consider this time?

 

[John-3919]

Hey Iggy,

Sorry to hear about your situation. Facing another surgery so soon must be very difficult.

I had an aortic valve repair, so I can’t speak to how much my situation applies to yours but hopefully it can help a bit.

I had my leaky aortic valve repaired in 2014 with the hope that it would last a lifetime, but despite leaving the hospital with a good repair, after about 6 weeks the valve became moderately regurgitant again.

The valve was stable enough to hold off a re-operation for a few years, but it’s progressed enough now that I’m having a valve replacement next month.

My new cardiac team told me two things which may apply to your case:

1. You really only get one chance at a repair. If it doesn’t work out the first time it’s unlikely they could go back in and make it better the second time. It would be best to replace the valve instead. (Again, this was told to me in regards to an Aortic valve repair, and it may not be the case for a Mitral valve.)

2. My new surgeon at Northwestern was extremely impressed with the work of my initial surgeon (top surgeon at Cleveland Clinic) in the repair. My initial surgery was a complete success and a technical achievement (re-sculpting my uni-cuspid valve). Unfortunately, there are no guarantees (especially for repairs) and for one reason or another my valve repair didn’t last. We gave it the best shot possible, but it didn’t work out. For better or worse, that’s just the way it is.

Those were my circumstances, so take them for what they are.

I’d certainly get a second opinion about your situation. I’m not sure where you had your initial surgery done, but Cedars-Sinai in Los Angeles isn’t too far, and is considered one of the nations top heart hospitals. A second opinion is always helpful, and may shed some light on what happened in your first operation.

I wish you the best in your second surgery and the time leading up to it. I’m out of work myself due to my progressively worsening physical limitations waiting for surgery next month, and the down time is overwhelmingly difficult. I’m only able to walk a few blocks at a time, so I’ve really been limited to staying home. As a 29 year old who wants to go out with friends, exercise, and just feel free to live life I feel your pain.

I hope you’re able to get the answers you’re looking for, and can get a more long term solution.

 

[nobog]

Iggy, welcome to the Forum

As far as: We were reassured and guaranteed a lifetime lasting result after surgery

I cannot fathom a surgeon saying something like this, unfortunately that is not the state-of-the-art. There is no guarantee even with a new valve. John-3919 summed it up very good, dealing with mother nature can be very difficult.

You did not mention your age as that will be a significant factor on your future decision(s).

I hope for the best for your future, look around the forum as lots of good advice here.

 

[Debster]

My mom has a mitral valve tissue replacement in 2005 that is still going strong. We were told at the time that repairs in the mitral valve position (and least for her) would not hold up as long. I am sure things have improved since then. Not sure of your age but she has done well with a tissue. Best of luck to you..please keep us posted!

 

[kevanndo]

Iggy,
My daughter was born in 2004 with a complete atrioventricular canal defect. One of the defects was that she had one common valve where she should have had two, so when she was three weeks old, the surgeon had to create a mitral valve for her. At six years of age she had to have a repair of that repair. Initially we were told that things looked great, but by the time we left the hospital five days after this second surgery, the leaking was classified as moderate. We had been told what you were told, i.e., that after this repair her stamina and energy levels would increase dramatically. Well, she ended up worse than she was prior to the repair. Unfortunately, she suffered a rare complication; as a result of the surgery, she developed hemolytic anemia, which basically means that the regurgitant jet caused by her surgical repair was now shearing her red blood cells as they passed through the valve. To make a long story short, when she was nine years old, we were again faced with a severely leaking mitral valve and another surgery. At this point we were told that a repair of a repair would not be a good surgical choice, so we opted for an On-x mechanical valve. As has been related many time on this forum, the idea of her being on warfarin for the rest of her life initially terrified me, but it's been over five years now since her third surgery, and I can honestly say that the warfarin management is not a big deal. I test her at home weekly and actually make dosage adjustments myself when necessary and call the clinic to report her INR and inform them if I've made any changes to her dosage. The most important point I want to relate is that her heart has been functioning beautifully since the third surgery. In fact, she has no mitral valve leaking, and I can clearly remember her cardiologist making a comment after the 2014 surgery that her echo showed that for the first time in her life, her heart was performing the way it should. Since she received the valve at such a long age, we're hopeful we have many good years ahead of us. So far, so good. Prayers for wisdom and discernment to make the best choice for you and your family.

 

[dornole]

I’m so sorry you are facing this. I had mitral valve repair 17 years ago here in Minneapolis, when I was 34 (it’s a specific sort, valvuloplasty, that doesn’t requires ohs but is specific to stenosis.) In terms of mitral Cleveland Clinic has a good rep for certain procedures like mitraclip and for myself I’d get an opinion at the Mayo Clinic because it’s 90 mins from my house. Only question is how many people you want to ask for possible alternatives and who to do the procedure - I’ve always understood in my case that a redo who be replacement not repair though.

I really hope you get this sorted soon. There are folks on this board who have had multiple ohs and are thriving with active lifestyles. That would be my wish for you for many years to come.

 

[dick0236]

Hi Iggy and welcome to the forum.
The first thing I would do is get a second opinion......from different cardio and/or surgeon. Since you are in your 30s and have a problem with bleeding, consider a "tissue valve" that would give you several years before needing replacement. By the time a replacement was needed the technology will have increased to allow a more permanent fix.

ps: If you are contemplating legal action against the medical community DO NOT post inquiries to the internet that could be used as a defense against your claim.

 

[Iggy]

Hey John,


Thank you for taking the time replying in such detail and your support!
Also thanks for the tip mentioning Cedar Sinai, It would make more sense for us to go to Los Angeles, rather than flying across the country.

I can sympothise with your situation and am sorry you have to go through this again. It’s hard to not do the things that you used to do or that you want to do, it’s hard waiting, and when you’ve done it once it’s hard to do it again. I wish you the best outcome with your surgery and recovery! Good luck!

 

[Iggy]

Thank you every one of you for your replies, they mean a lot and give me ideas what to do next. Now Im considering talking to a couple other specialists, cardiologists and surgeons. I was thinking about UCSF and perhaps Stanford hospital. Once I’ve got the TEE results we may visit a surgeon at USC hospital or UCLA, both have years of experience doing heart surgeries. I have not yet found a surgeon in Ca specializing on mitral valve repairs mainly, which makes it hard for me to narrow it down.

 

[Protimenow]

Iggy, you've already gotten good advice here. Dick's advice to get a tissue valve, and expect a medical advancement that will repair the valve, once it starts to fail, is an approach that it seems many are risking. At this point, there's no solid evidence (although there is progress being made in that direction) that a non-invasive repair/replacement will be available before you need it.

OHS is certainly scary. There's no guarantee that a mechanical valve will absolutely last the rest of your life, until you die from a fall off the top of some new 165 story skyscraper, but mechanical valves have an excellent reputation and excellent history of success (Dick has had his mechanical valve for more than 50 years, for example).

If you're avoiding mechanical because of the horrors of anticoagulation -- this is a decision that isn't based on fact. Those on this forum who have mechanical valves are taking warfarin/coumadin. It's easy to manage. Weekly testing is simple. I've been self-testing for more than a decade - and I'm probably not the first one here who adopted self-testing when the meters became available.

You'll see reports from many on this forum about maintaining very active lifestyles, relatively unaffected by the fact that they take warfarin.

Plus - along with the developments in minimally invasive valve repair/replacement, there's research being done to find a much more expensive alternative to warfarin that may not require the dreadful, painful, difficult, weekly self-testing (requiring a small incision, by a lancing device, of a small spot on a fingertip, and depositing your blood onto the test strip). In the future, you may be able to switch from warfarin to this other drug, and the only reminder that you have a mechanical valve would be the clicking (which you WILL get used to), and the need to take this new anticoagulant medication.

And, if that's not quite enough, there's work on new mechanicals that use newly developed materials, and may even eliminate the need for anticoagulation, and may not click.

I had my surgery at St. Vincent's in L.A. - where a really great heart surgeon practiced. I've read good things about Stanford, and I'm sure that Cedars-Sinai has some great surgeons.

Good luck deciding what's best for you, and I hope you have a great result, whatever you choose to do.

 

[tommyv44]

Please absolutely get a Cardiac MRI...do not be satisfied with the Echo....it isn't the definitive test for regurgitation!!! Most cardiologists insist it is as do the surgeons DUH!

You need other opinions as well......if it's OHS I'm getting more that a few opinions.

Google Dr Seth Uretsky and Dr. Stephen Wolff and see what they have to say about the ECHO compared to the MRI.

Good Luck!

Tom

 

[vitdoc]

I think in your case a re repair would generally not be recommended. So you are down to surgery with a mechanical valve or a tissue valve or possibly a mitral clip. I have had 3 open procedures for AS and aortic aneurysm with a St. Jude valve. I then developed marked decompensated mitral insufficiency requiring something. I was almost ready for a forth open heart for a mitral valve but at the last minute the surgeon suggested I consider the mitral clip. I did the clip through the groin and it worked perfectly. Three years later still minimal regurge. I had my clip done by Sabil Kar at Cedars in LA . He is no longer there but is in LA. At that time he probably had the largest clip experience in the US. Since then many others have expanded their experience with clips. Find someone who has done many hundreds or more.
So see if you are a candidate for that procedure. Piece of cake compared to open heart.

 

[tommyv44]

Make sure you have a Cardiac MRI.......the Echo is not sufficient....you might not even have sever regurgitation!

Tom

 

[vitdoc]

Usually with mitral insufficiency the clinical signs of decompensation are more important than the regurge. I was followed for years with significant apparent regurge but I was compensated. When things went south clinically I needed intervention. So most cardiologists will move when they detect reduced cardiac function and not just regurge.

 

[Iggy]

Thank you protimonow, tommyv44, and vitdoc!

I will definitely ask my cardiologist and surgeons about getting an MRI done. I agree, that sometimes TEEs are not very accurate. My original TEE back in December was showing some vegetation mistaken as a sign of endocarditis which got me really upset. Upon my first consultation it turned out it was just a flaling chord that broke off. I had had endocarditis a few years before, but they could only tell when they saw the hole in a leaflet while operating.

 

[Astro]

Make sure you have a Cardiac MRI.......the Echo is not sufficient....you might not even have sever regurgitation!

Tom

The 2014 American Heart Association guideline states:

“In most cases, TTE provides the data needed for adequate evaluation of the MR patient. However, in cases where TTE image quality is poor, CMR may be of value in MR evalua- tion. CMR produces highly accurate data on LV volumes, RV volumes, and LVEF, and an estimation of MR severity, but outcome data using CMR volumes is pending. CMR is less helpful in establishing mitral pathoanatomy.”

(TTE: transthoracic echo, CMR: cardiac MRI)

According to this, echo is sufficient for most people but Cardiac MRI may provide extra data when echo views have been poor.

I think looking at left ventricle size (volume and dimension) and left atrium size (volume) from the echo/CMR can tell you whether the estimated regurgitation is real. It is not just about quantifying the amount of blood that is regurgitating backwards. The effect this is having on the left ventricle and left atrium shows whether the heart is struggling with the volume overload from the regurgitation.

Good luck. Extra scans (whether another echo or CMR) is always a good idea if you are just relying on one scan.

 

[pellicle]

nothing to add to all of the good advice above, just wanted to express my best wishes that you find a good path, both medically and emotionally

I'll just leave this here from one of the great Stoic philosophers to hopefully remind you that you have inside you what it takes to get through this:

Best Wishes

 

[tommyv44]

The 2014 American Heart Association guideline states:

“In most cases, TTE provides the data needed for adequate evaluation of the MR patient. However, in cases where TTE image quality is poor, CMR may be of value in MR evalua- tion. CMR produces highly accurate data on LV volumes, RV volumes, and LVEF, and an estimation of MR severity, but outcome data using CMR volumes is pending. CMR is less helpful in establishing mitral pathoanatomy.”

(TTE: transthoracic echo, CMR: cardiac MRI)

According to this, echo is sufficient for most people but Cardiac MRI may provide extra data when echo views have been poor.

I think looking at left ventricle size (volume and dimension) and left atrium size (volume) from the echo/CMR can tell you whether the estimated regurgitation is real. It is not just about quantifying the amount of blood that is regurgitating backwards. The effect this is having on the left ventricle and left atrium shows whether the heart is struggling with the volume overload from the regurgitation.

Good luck. Extra scans (whether another echo or CMR) is always a good idea if you are just relying on one scan.

The fact is the Echo is frequently wrong and not sufficient and in one study misdiagnosed 50% of mild regurgitation as severe...not a good sign!! if it's my heart and at one time it was I'm getting the MRI!

 

[tommyv44]

2014???? What year is this?

 

[pellicle]

2014???? What year is this?

Just because research isn't done last week does not invalidate it. We still have similar numbers of fingers for instance. So as research costs, unless there is a compelling reason to explore why its wrong (if it's wrong) we don't.

Much material science done on metals for instance is very old, but we don't see a reason for redoing it.

If you do find more research which overturns or invalidates their findings then please present it.

However an expected practice in academic writing is to provide a justification to your claim rather than just say it. This is called veracity.

So him making a citation to support their view is more than reasonable, its proper.

Do you have a reasonable doubt its still accurate? If you do then you should review the current literature and see for yourself.

Nullius in verba