Mitral Valve Repair Members - Question

[Adrienne]

I am addressing this post to all people who have had a mitral valve repair. I was inspired to do this after having received two separate private messages from two other people who have had mitral valve repairs and had the same worries as myself. When I was discharged from the hospital, I had zero regurgitation. Eleven months later the regurgitation was 1 (the doctor in the echo room called it trivial). My cardiologist did not seemed concerned at all with that. The two people who wrote me had similar experiences.

I just saw my surgeon today (Friday) at the Valve Clinic of the Montreal Heart Institute. I am able to see him once a year there. He was very pleased at what he saw and was not worried at all about the 1 over 4 regurgitation which he said was really probably less than 1. He said there was absolutely no murmur. Basically, he thinks the repair will last a long, long, long time. I hope he is right!

What I would like to know from all you mitral valve repair people is the exact type of repair you had, whether it was leaking right after the repair and whether it is leaking now, and if so how much. How long has it been since your repair? What does your cardiologist say?

To give specifics about my repair, my surgeon could not do a resection because there was too much calcification around the annulus. So, he removed the some of the calcification although he left most of it since he just covered it with the Edwards ring, used Gortex to repair and replace the ruptured and stretched out chordae, pulled down the valve with the neo-chordae so that it would shut correctly, and then, as I said, he put an Edwards ring around the annulus.

 

[JOHANNA666]

Thank You

Thank You

How Do U Feel Now With Your Repair?

 

[Christina L]

Hi Adrienne -

Hi Adrienne -

I took off my former post because I told you all more than you want and need to know. My regurg went from absolutely zilch to 1+ in three years. I also have been recently told I have mild stenosis of the mitral valve from the ring that is around it. Guess Dr. Cosgrove tightened me up a bit too much. Also I have 1+ regurg of the tricuspid valve which was physiologic just a year ago.

I am beginning to think that I am "making" myself worse by my constant obsessing and the thoughts I have. I believe your mind is so powerful. I am working on changing that and getting on with my life.

Congratulations Adrienne on your wonderful report!

Christina L

 

[marky]

Well I think I need to be better informed!

I only know.. that I had a bicuspid repair.. lots of cutting, lots of gortex, and some kind of ring put in.

I have another echo scheduled for march.. so I will find out about the leaking then.
up until now.. I have not had any leaking that I am aware of..

 

[WayneGM]

I had my mitral valve repair 11 months ago (Feb 28). It was repaired with a 70mm Simplicit-T Band (annuloplasty ring) and suture. I don't know the numbers pre-op but I had a loud heart murmur and severe reguritation. My heart had modest enlargement. The problem was caught quite early as during my annual check-up the year before my GP didn't flag the heart murmur so whatever happened, it happened fast. I had two Card visits to monitor the situation and the change between the two visits was significant enough to call in the Surgeon and schedule the surgery asap.

Anyway, my last echocardiograph was in September. At that time the summary page of the report said I have "trival" mitral regurgitation and heart chamber sizes are normal. Unfortunately, I don't know how to read the "technical" page. The Card said there's no murmur either. However, there was trace pulmonic reguritation present but he said it's nothing to worry about. Both the Card and Surgeon told me the repair should last the rest of my life. I'm not scheduled to see him again until next September.

 

[Adrienne]

Anyway, my last echocardiograph was in September. At that time the summary page of the report said I have "trival" mitral regurgitation and heart chamber sizes are normal. Unfortunately, I don't know how to read the "technical" page. The Card said there's no murmur either. However, there was trace pulmonic reguritation present but he said it's nothing to worry about. Both the Card and Surgeon told me the repair should last the rest of my life. I'm not scheduled to see him again until next September.

I have trace (trivial) tricuspid valve regurgitation as well as the mitral valve, but I keep hearing over and over that if an echo were done on the whole population, the majority of people would have that.

Anyhow, it is encouraging to hear about others who have trivial regurgitation and whose surgeons say the same thing as mine about the valve lasting.

 

[MikeHeim]

My repair included a resection of both the anterior and posterior leaflets, but my chordae were all still in place and functioning. I also had enlargement of the left ventricle. I was told that I had trace regurgitation during my post-op echo, which caught me WAY off-guard at the time, but I now finally accept the fact that it it normal (in part from the volumes of people on this website who say the same). I've never seen a number put to the regurgitation either before or after the surgery, but I think I'll ask when I'm at my next checkup...

 

[joanne6]

My repair was almost 18 months ago. I had resect of leaflets and annuloplasty ring. The docs do not hear any murmur but I think on Echo I have very minimal regurg. I just had a pacemaker put in for significant heart slowing during new onset syncope since I had the heart surgery.

 

[ruth]

Adrienne -

I just saw the surgeon a few days ago for my post op checkup. She said she thinks the regurg will be a 1 or less and that it sounds very quiet. I have not yet had a follow-up echo.

As the repair was explained to me a ring (don't know brand) was used to bring the valve back to egg shaped from round as it had become. The bottom leaflet had a section cut out and sewn back together to tighten it up. No work on the chordae.

My surgeon feels it is a 20+ year repair, perhaps lifetime. She also feels my aortic valve may only have another 20 in it. All due to rheumatic fever.

 

[catwoman]

Posterior vs. anterior

Posterior vs. anterior

What's the difference between posterior & anterior mitral valve leaflets?

The cardio who did my husband's TEE on 2/1/07 said there didn't appear to be any myxomatous tissue or thickened leaflets. Only damage was ruptured chordae.
Myxomatous tissue would be degeneration; thickened leaflets would be calcium deposits, I would think.

Am I correct?

So, we're very hopeful for a successful repair... whenever that is. We see our cardio on 2/15/07 for written results of stress echo done last month, a repeat echo done 1/19/07 and Thursday's TEE.

 

[weekycat]

My mitral valve repair is going on 5 years old...

My mitral valve repair is going on 5 years old...

I had both leaflets repaired or (tweaked) as the surgeon put it to my husband, and also two ruptured chordae tendenae. I have an Edwards Charpentier annuloplasty ring also. When I went for my 1 month exam, my surgeon told me, "That repair will last you for the rest of your life, now get out of here, I never want to see you again!". That is seriously what he said, but I think he meant it in a good way

I don't know what my numbers were either, but my regurg was severe, and I had a very loud murmur. I no longer have a murmur and IIRC they said I have some trace mitral and tricuspid regurgitation going on now. I haven't had an echo in a year and a half, but my cardio says I only need one every two to three years now. I'm going to try to get one done by the end of May since that will be 5 years out. I figure if everything is well by then...my surgeon just might be right, and I won't worry about it anymore.

 

[Atlanta Sweetheart]

I had my mitral valve repaired in

I had my mitral valve repaired in

July 2005. Prior to repair my leak was considered severe, flail. My repair was done by robotics and I have a 34mm Edwards Annuloplasty ring. At my four month check up my cardiologist told me that he could not hear my murmur. I did have a "trace/trivial" leak in the valve. He said that surgeons just could not put it back together perfectly. He said not to worry it should last me a lifetime. I went back in Sept. for my year's check up and still no audible murmur; the leak was still trivial but no change in the amoung of leakage. I see him in another year and have an ECHO in two. I feel great, so with so many of us being "trivial" this must be the norm. Try not to worry. I am trying not to as well. Cindy

 

[Adrienne]

Catwoman, I googled myxomatous and here is what I found:

myx·o·ma (mk-sm)
n. pl. myx·o·mas or myx·o·ma·ta (-m-t)
A benign tumor, most often found in the heart, composed of connective tissue embedded in mucus.
------
myx·oma·tous (-sm-ts, -sm-) adj.

To everyone: I see that trivial or trace regurgitation really does seem to be the norm, and that all our surgeons and cardiologists seem to say the same thing. That's encouraging!

 

[Christina L]

Unfortunately, it seems for me

Unfortunately, it seems for me

that I may be one of the unlucky 10-20% whose repair doesn't make it the distance. I was just told (again) that my repair should last 20 years even though now this new cardiology office I am going to, is reading the regurg as 1+ when just last year (at two years post surgery) it was read as trivial. I am asking my former cardiologist if he will read the echo tape, since he had followed me before and after surgery. I hope he will be able to tell if there really has been a change in my valve - I especially want to know about the mildly stenotic part.

I am afraid (and somewhat angry) that Dr. Cosgrove may have been overzealous with my repair by tightening the ring a bit too much. However, I know it is not his fault if the repair doesn't last - it will be the luck of the draw.

Congratulations to all of you on your tight repairs so far post surgery.

Christina L

 

[MelissaM]

Chris,

That is a good idea to get your echo tape read by your other cardio.

Where did you get the idea that Cosgrove was "overzealous" in tightening your valve? You have to bring the two sides together to make the repair, and the result is going to be a slightly smaller opening. Which, in the case of a valve repair is called "stenosis." Before you go thinking that yours is excessive, ask yourself if you have comparisons of mitral valve repair measurements on which to go. Cosgrove has done THOUSANDS of repairs, it just seems highly unlikely he "tightened you too much." Is your opening smaller that it was a year ago? If not, then it is simply a difference in how the tech is reporting the same opening.

 

[Christina L]

Hi Melissa -

Hi Melissa -

Someone here on VR.com told me on a personal E-mail that 1.5 sq cm is considered moderate stenosis and that I could be having symptoms. I got the E-mail from this person this morning and am frantic, calling Cleveland to talk with Jeanne and also called my new cardio's office. I left messages for both offices to call me, so I have no idea when I will get any peace of mind (if I do).

Thank you very much, Melissa, for saying that the term stenosis is used in describing a mitral valve repair. My new cardio said the "stenosis" is from the ring around the mitral annulus.

I guess I am saying that Dr. Cosgrove was overzealous in a joking sort of way - but it would not be his fault if the valve is stenosing - I gather it could be from calcification or scar tissue (?).

Thanks Melissa for your calming words - I am going to have my former cardio read the echo also.

My life is flashing before my eyes again....


Christina L

 

[Christina L]

I didn't know whether

I didn't know whether

to keep going on this thread with info for you all regarding my repair, but feel it will benefit all of you repairees to hear this.

I have heard from my new cardiologist's office and spoke with a very wonderful nurse. She said she has not seen a valve repair that is 100% perfect, but most repairs come close. She said ALL valve repairs are considered stenotic and really so is a replacement. The valve area is not the same as it was before surgery. She said the stenosis can get worse but she was looking on past records of mine and said it didn't look worse, in fact better, but she is going to have the cardiologist call me personally and he is not in the office until Wednesday.

I asked her about chamber sizes and degree of regurgitation - she said (as we all know) that the degrees of regurg are trace/trivial, 1+, 2+, 3+ and 4+. She said the degree of regurg that shows up on an echo can vary with how well you are hydrated, blood pressure, etc. Regarding chamber sizes (LA) - the difference between a measurement of 3.7 and 4.1 is very slight and subjective.

Anyway...I am somewhat calmer, but still concerned. The nurse was wise to say that a person just needs to watch everything over the years - by getting an echo yearly or every other year.

I am waiting for a call from Jeanne (Dr. Cosgrove's fantastic assistant) and will be sending a letter to my former cardio to see if he will read my echo tape to compare it with my four previous echos over the last three years.

FYI Melissa and all. Again, thanks Melissa for your wise advice. It was much appreciated.

Christina L

 

[Christina L]

Well....

Well....

okay....just talked with Jeanne at Dr. Cosgrove's office. She said that stenosis does NOT happen with all repairs and replacements. She said my stenosis is mild and will just need to be watched. She said if the cardio said it is mild, it is mild. Jeanne said stenosis after surgery is caused by a lot of things - maybe there was rheumatic disease that they didn't know about, etc. I don't think that is the case, though. I truly think the ring was just put in a little bit too tightly, but probably had to be to bring my mitral valve leaflets together. Also scar tissue and such has maybe tightened it up (per Jeanne).

Jeanne said that I am way ahead of myself (as usual) predicting a reoperation. She knows me well. She said if the stenosis gets worse, I will need a replacement. I am sad.

P.S. Why the cardio's nurse and my new cardio tell me there is always stenosis, I am not sure about. Is a cardio to be believed more than a surgeon - cardios follow longterm and surgeons do not (?). I am anxious to talk to Dr. Chapel now and my old cardio. I'll keep you posted.

Christina L

 

[Adrienne]

How Do U Feel Now With Your Repair?

Sorry I didn't reply sooner to this post. I think I passed over it too quickly. Anyhow, I feel great!!! My heartbeat is regular and I feel alert and energetic (knock on wood - not that I am superstitious or anything)!

Meanwhile, Christine, I agree that it is very frustrating when one doctor tells you one thing and another something else. Believe me, I've been through that. In the meantime, I think you should try to concentrate on other things (I know, easy for me to say I'm the biggest worry wart in the world when I see a result I don't like), but at the same time keep a computer file where you type out questions every time you think of anything so that when you see your cardio the next time you will have all the questions typed out.

 

[MelissaM]

Chris,

How would Dr. Cosgrove's nurse be able to make a judgement call about your particular case w/out seeing your echo results?

Anyway, the way I look at it, it is like fixing a hole in a glove. You have to bring the two sides together, and normally - almost always - you would have some overlap of the two sides, which would reduce the size of the opening. How narrow you made the hole would depend on the hole and the seamstress. So, depending on what type of person you were, you could say there is always (almost always) stenosis with repair/replacement, or you could say that there some have stenosis and some don't. I guess it just depends on the repair - if the repair was just on a floppy leaflet, for instance, and they didn't need to do anything to stablize the opening (ie, put in a ring), then I guess you could say that some repairs don't have stenosis. It seems fair to say that almost all repairs requiring a ring would result in some stenosis. They are, after all, using the ring to stabilize the opening and bring the leaflets together.

Your nurse had the facts, your echo in front of her, Jeanne did not. Listen to your nurse.

Echos are very subjective - imagine trying to take a tape measure to your heart while it is beating. . .the best we can do is get a series of data points year after year and see what they do over time. Based on what your cardio nurse said, your "stenosis" is the same or better than it was (and she has the measurements!).