Dilemma

[Steve]

My family Physician says : Get the valve replaced before your heart gets damaged further.

Cardiologist says : You have no symptoms, hence wait out

Surgeon says : Agree with cadioligist

What should I say now?

I have damaged mitral(MR) valve due to Rheumatic fever

(My family physician(66) got his own valve replaced by the same surgeon).

 

[catwoman]

Steve:

What makes your family doctor say to get it fixed before your heart is damaged further, yet neither your cardiologist nor a surgeon say it's time??

What are the results of your latest echo? Have you had a TEE yet?

 

[Steve]

My physician believes that with a damaged valve the overall heart condition deteriorates as the heart has to work harder to pump blood. Therefore he recommends early replacement of mitral valve.

I am getting echo done every 6 months and the condition of my heart remained the same so far. Next echo is scheduled for Jan 21. I do not have the details of my earlier echos readily with me.

Never got TEE done. Got stress echo done in Aug'09. Overall I feel very normal and there are no symptoms.

Don't know what to do.

 

[Johan]

I agree with Marsha that one wonders what the family doctor "sees" that the others are not picking up. My own family doctor faithfully listened to my heart murmer with his stethoscope, for years but never expressed an opinion on the timing of valve replacement.

He just collected and filed away the annual echo reports (and later catherization reports, 5 in all) from the cardiologist but left it to the latter and later, the surgeon, to argue the merits of valve replacement with me.

My feeling is that you go with the opinion of the cardiologist and surgeon (do you already have a surgeon on board?). You are the third person in this decision-making process. Get a feeling for your echo readings and the direction these are heading. I also had no symptoms, or so I thought, but one of the sobering remarks by the surgeon was that sudden death is also often a symptom....

 

[kfay]

Steve, I would go for your visit later this month and I would ask your cardio what your numbers are and what they need to be for him to recommend surgery. I would then get copies of your echos for the last several years and look for yourself if there have been any changes in your valve/heart. Lastly, I would find another surgeon that has alot of experience with valve surgeries and I would take all these reports with me to get a second opinion. If that surgeon agrees that now is not the time, I would relax and keep watching like you have been doing.

 

[catwoman]

I think your family doctor is a little anxious because of his own VR surgery.

You may want to have another surgeon take a look at a report of your last echo and compare to that the one coming up.

There's no need to get it fixed if your heart appears to be functioning OK, based on echoes and lack of symptoms. However, you do want to be able to "connect the dots" before it's too late.

 

[Nancy]

My husband always said, "Surgeons like to cut, that is their job." So if your surgeon says to wait a while, it sounds like good advice. I am sure, if the valve was ready to be replaced in any way shape or form, he would be jumping all over it to get you in.

If both the cardiologist and the surgeon told you the same thing, that's a good clue that you are still in the "waiting room". If one of them disagreed, then getting another opinion would be prudent.

Remember, the heart is both their fields.

But I also have to say that your GP has a good point. Once you start to get symptomatic, you would want both the surgeon and the cardiologist to be keeping a close watch on it. It is true that getting it taken care of sooner (once symptoms start) is better for you.

 

[Cris N]

If I were to comment I would say what Nancy said - but probably not as well.

 

[pamela]

Hi ya,

I think you also need to be honest. If you are feeling fearful and concerned along with mild reluctance to agree with the cardio and surgeon, are you being completely forthcoming concerning your signs and symptoms...

Cyanosis,
Fatigue in general
Muscle fatigue and tingling in your extremities when holding your arms up over the height of your heart,
SOB,
Palpitations,
Anxiety,
Insomnia,
Fluid retention/edema in your lower extremities,
Cold hands and/or feet,
Visual aura -- squiggley lines, glowing focal points... dimness of peripheral vision.
Dizziness and fainting,
Depression.

Those are some of the more common ones. Never under-estimate or deny the onset of these things since as Johan said, sudden death is also on that list. First admit the severity or presence of symptoms, then if you really are deteriorating, let your team in on the secret.

 

[ALCapshaw2]

To my mind, Symptoms are a sign that DAMAGE is being done (and has already been done) to your heart in some manner.

That said, there are well established guidelines for when to recommend Valve Replacement Surgery based on the size of the opening or level of regurgitation.

You NEED to have copies of ALL of your Echocardiograms to check your history, progression, and where you stand in regard to those 'triggers'.

I transfer ALL of the data from my Echocardiograms to a Spread Sheet for easy comparison.

SO, get copies of your echocardiogram reports and take them with you when you visit your Cardiologist after your upcoming echo.

FWIW, Old School Cardiologists are known to like to wait for symptoms while many (most?) surgeons prefer to operate Before Permanent Damage is done to your heart.

Since the surgeon you consulted recommended waiting, I suspect you are below the 'trigger levels' for recommending intervention. Having the reports in hand will allow you to KNOW where you stand.

'AL Capshaw'

 

[Kathy McCain]

Steve,

I would listen to my surgeon and cardio. They are the specialists. I had no symptoms either. When my cardio and surgeon both said it's time. I went for it. Evidently, there has not been any damage to the heart at this point.

 

[epstns]

Steve,

I would also side with the others who advise to lean toward the advice of your cardio and surgeons. I would especially be mindful of the advice of whichever doc reads your echo results, as they would be the one to monitor progression of your condition. When it gets nearly time, they will speak up. Maybe your family doctor is trying to advise you based on his personal experience. . . which may be nothing like your own.

 

[Freddie]

Steve, from my own personal experience on having a damaged Mitral valve, I too had no symptoms – or so I thought. The heart/body compensates when something is wrong and I strongly felt I had no problems at all….until I had the surgery done and realized that doing some simple yard work was no longer a chore.
For years, while cleaning up one small area of my yard I had enough and had to quit with the job incomplete. Now after surgery I can do that same small area in no time flat and can continue to do more – spring clean-up is now a snap.
Granted everyone is different in this situation. I went from feeling just fine – one would say perfect, to having the worse case of SOB within seconds after going to bed – for me it happened that fast. Five days later I had surgery.

I suppose if you asked your GP to talk to your cardio and surgeon about having surgery sooner than later, you would be put on the back burner until you showed some physical signs right? But maybe if they got to it now they could repair the valve instead of replacing it. Maybe these are two questions you could ask at your next appointment.

 

[Steve]

Hi Everyone,

I just do not know how to thank you all enough for your responses. My heart is filled with gratitude and joy seeing how helpful all of you are.

Honestly I do not have any kind of symptoms. I mow my yeard which is about 5000 sft in area at one go. I feel exausted at the end of it but within 5 or 10 minutes I feel ok.

I have an appointment with my cardiologist on 1/26. I will discuss everything with him as suggested by you guys. I personally feel that I should get MVR done as soon as possible. I am well prepared mentally as well. I have made this clear to both my cardio and surgeon. Both Cardio and the surgeon say that I am not ready yet. 8/09 they did stress echo on me. I lasted for 11.00 minutes on the treadmill. Report came out ok too.

My cardio said that a repair is not an option for my valve now. It has to be replaced.

I am 50 years old and I am thingking of getting a mechanical valve. This is something that I need to decide after a surgery date is finalized.

I will update you all after the appointment with my cardio.

Thank you all from the bottom of my heart.

Steve

 

[Guest]

Progression of regurg...

Progression of regurg...

Hi Steve...

I was diagnosed with mild/moderate aortic regurg and moderate/severe (3+) mitral regurg in 1998. I complained of being very tired (later discovered that was sleep apnea!) and was sent to consult with a surgeon who said I would probably need surgery in 1-2 years.

Well, I am now scheduled for surgery next week....almost 12 years later. The cardio said a repair or replacement is not as good as the original as long as you are asymptomatic and the echos show no heart change. I went my merry way for 10 years...then started minimally slowing down....then progressed to "just not feeling right" and sob this fall. On a stress echo I was only able to do 7 1/2 minutes (previously had always done 9+) and the mitral regurg went to severe. Still no heart changes, but cardio and surgeon agree that now is the time. I am 66 and will be receiving tissue.

The changes were so gradual that I didn't realize what was happening for about a year. But when the sob set in, I noticed it! Everyone is different, but I would go with the cardio and surgeon. My cardio has been doing an echo every 6 months for the last 3 years.

Best wishes.

Pat

 

[Missy]

My cardiologist is one of the best in Az. and he waited for my stenotic mitral valve to reach a certain point. .9 I think it was. I lived quite a ways from Tucson and from one visit it the next it escalated so fast that my atrium was so enlarged that they could never get me out of Afib and now I am chronic. It took two years to reach that point and then just everything happened so fast. I felt bad and had some symptoms though. And took medication the whole time along with coumadin.

My cardiologist told me all of this and was very honest and told me that he wished he had done it sooner. If I had lived closer he might have caught it sooner. Who knows?

Anyway I suggest that you get it checked as often as you can. And then do it as soon as there is any change.

I don't know if you have the same problem I did. My heart was damaged due to rhuematic fever as child. I had mitral valve stenosis. And it overworked my heart. And it can happen fast.

Stay on top of things yourself. Then either way it goes you will do okay.

 

[Steve]

Pat & Missy, Thank you. Missy, you and I were on the same boat. I too had Rhuematic fever as a child that caused my valve damage.

Pat good luck with your surgery. My prayers for an uneventful surgery and early recovery for you.

Steve

 

[Lynlw]

I agree with the others that said for decisions about your heart, I tend to go with what the specialisit say.
BUT I wanted to say, I don't know where you live or which hospital /docs you use, but this sounds like a great time to get a 2nd opinion from one of the larger centers that have the most expirience. Your cardiologist said your valve can't be repair and must need replaced, some times people have been told that (usually by surgeons) but when they contact bigger centers they find out that a repair IS possible. it just takes a surgeon with alot of experience. Now for all i know you may be going to one of the top docs, but it is just a thought. I usually find if I am getting different advice from doctors, it is helpful to get another opinion

 

[LisaD]

I was completely asymptomatic prior to my surgery, but my heart was starting to enlarge, which is damage. The surgery was done based on the numbers and changes from previous echos. Symptoms DO NOT equal damage. There are also plenty of people that are symtomatic with valve issues that do not need surgery, so that does not always play into the call. I had mitral valve prolapse with severe regurgitation and worked in an inner city ER right up to my surgery date. I was diagnosed as a child and had surgery at 35. A second opinion is always a good idea if you have doubts. Every body compensates differently.

 

[Steve]

Lyn & Lisa,

Thank you for your thoughts. I am being treated by one of the best heart centers in the country. The surgeon who I plant to get my surgery done by has about 6000 heart surgeries under his belt most of which are valve surgeries. I always get my echo read by two cardios each time it is done. So as far as my echo is concerned there is always a second openion.

Like most of you advised, I will go by the specialists' recommendations + my own health condition.

Ofcourse I will keep you guys posted on any updates.

Thanks again,
Steve