Facing Surgery for 2nd time

[Kate]

Hi Dewayne,
As you can see, the issue of valve choice tends to stir up strong feelings! In my opinion, for people in their middle years (roughly 35 - 60) this decision is largely one of personal preference. Statistics suggest that neither choice has an obvious benefit in terms of years of life, quality of life, etc. So, it comes down to what is most acceptable to you personally. I chose a biological valve because I'm more comfortable with the idea of facing the occasional, major risks associated with repeat surgeries than facing the day-to-day minor risks and inconveniences associated with coumadin. However, many people on this forum feel otherwise and are equally correct. The good news is, very few people seem to regret the choice they've made, so give yourself time, learn as much as you can (Tobagotwo's posts mentioned above are particularly helpful for this) and I'm sure you'll know what is right for you. Take care, Kate

 

[MitralMan]

DeWayne, I'd come at it from a slightly different angle...

DeWayne, I'd come at it from a slightly different angle...

Pick your surgeon, and then "go with the flow."

If your cardiologist disagrees with your surgeon, pick a new surgeon -- or a new cardiologist -- or both.

My take is this: once you've done the hard work of picking the expert, don't second guess him. It's pretty clear that a convincing argument can be made about any number of choices (mech vs. tissue, pig vs. cow, etc.). But why on earth would you pick a guy and then constrain his options or approach?

My .02!

Best of luck to you!

 

[RCB]

Just a 10 year study

Just a 10 year study

This statement frequently arises in valve choice discussions. I ran a poll of members who have received a tissue valve and asked poll respondents to state whether they have developed afib and if they're on coumadin as a result. Here's the link so you can read it for yourself.
http://www.valvereplacement.com/forums/showthread.php?t=14312

72 members polled have stated that they aren't on coumadin post op. One member did say that she was, but later clarified that she had the afib previous to surgery.

My point is that I wouldn't let the possibility of developing afib post surgery influence my valve choice. There are enough factors to consider without adding one that doesn't seem to jive with our own members' experiences.

Good luck on your journey and let us know when you have a surgery date.
Mary

Here is another point view from a previous post on this subject. I'll leave it to DeWayne to consider possibility of developing afib post surgery might influence his valve choice, at least it will be an informed choice:

"2. Speaking of biostatisticians, Lance you might consider this article as you reflect on your question, as one of its contributors is one of the leading biostatistician of our time- Dr. Gary Grunkemeier:

http://www.onevalveforlife.com/documents/2of3.pdf

Draw your own conclusion. Any biostatisticians want to challenge this?

.3. Lynlw, this poll

http://www.valvereplacement.com/foru...t=14312&page=2.

is a good illustration of how one could draw a false conclusion based on problems of sample distribution. Note how one respondent remarks that he would have expected a higher rate of AF among the data set. Not really, because the most of the data was taken from people who had their surgeries within the last several years and are relatively young. AF increases with age and the number of surgeries. What has been the history of heart patients is as the age of the population distribution mature, AF sets in. Also, the younger one is when you have valve surgery, the more likely you will have more years AF free. I didn’t get it till my early thirties, 20 years after my surgery. Some people in their 40’s get it 5 to 10 years after surgery and 50’s 3 to 7 years. Also, Mitral valvers are more prone to it then any other valvers. Statistically, it would be a good bet that ten years from now, if the same people responded, the incident of AF would be much higher. Any takers on that bet?"

Also, your surgeon told you "he didn't think he had the discipline to handle what it took for coumadin etc....."! I don't mean to sound skeptical, but there are people here who have been on warfarin longer than he has been a surgeon and speaking for most, if not all of them, none of us have the discipline to be a heart surgeon. What in Sam Hill is he talking about?

Here's a poll you might find of interest:
http://www.valvereplacement.com/forums/poll.php?do=showresults&pollid=88

These are people who have been around the block more than a few years- again, you be the judge.

By the way, Welcome DeWayne to VR. COM "The Four Decade Club"! Ross will present you with your key code to the VIP lounge.

 

[BDMc]

So Glad I Don't Have to Hijack

So Glad I Don't Have to Hijack

DeWayne, Welcome! As you can see, we are a passionate and spirited bunch! I think Kate has pegged the evaluation issue. It has to be as much as possible your choice. We mechanicals get a little heated when we hear quotes from ignorant people about the hazards, or difficulties of ACT. Like RCB said "What in Sam Hill is he talking about?" As a 21+ year survivor, my view is unless you are playing contact sports, or are planning on getting pregnant, why not go mechanical? There are plenty of stories of success on both sides here. You'll find a tremendous wealth of experience, and some of the most generous hearts you'll ever come across. All the best, Brian

 

[DeWayne]

I guess at this point I am probably leaning towards a mechanical valve. The idea of a 3rd surgery does seem more scary than the rest of it. As for the choice in valves I had done a good bit of reading on the ON-X valve and is sure seems like the best choice of those out there.
With the early testing results showing good results from reduced anticoagulants it would seem foolish for me to go with one of the other valves and risk not being able to take advantage of the newer technology the ON-X valve may have. Of course now I have to find out if my surgeon has any experience with it and how he feels about it.

 

[DeWayne]

Had an interesting conversation with the surgeon tonight. Had emailed some questions and he called to answer them.

He said I was not a good candidate for the on-x valve due to my very enlarged root. We discussed the effects of coumadin. He said that the chances of a bleeding event were around 1% or so each year and that that was accumulative, so that after 15 years it was 15% and 20 years it would be 20% chance. Gave me more to think about.
He discussed the st.judes valve which would be his choice for my situation along with his choice should I select a tissue valve. He said tissue wise he would use a Medtronics Freesyle non-stented valve. He said with a 3rd surgery should I pick a tissue valve would have a risk factor depending on some things like scarring etc, of around 15% which compared to what is looking like 20 years on a tissue valve based on it being the aortic valve, vs 20% risk of being on coumadin for 20 years. That was rather eye opening.

We also discussed atrial fibrillation potential and he said that my heart was operating excellent in all the tests and the only problem I really had was the aortic valve and the aortic dialation, that he gave me a chance that I would develop that problem even after 10 years at less than 10%.

So more research and more churning, but I am a little clearer in understanding at this point. Just thought I would share this information we discussed.

 

[Superbob]

DeWayne,

I don't know about those statistics. After all your research, it really comes down to your own gut feeling about what is best for you.

Just thought I'd mention that I also had a very much enlarged aortic root in addition to the leaky valve, and I chose the Medtronics Freestyle stentless (porcine). My experience with it has been excellent so far. However I was somewhat older than you (63) when I had the surgery and it was also my first surgery. So I am not lobbying for this to be your choice. Just wanted to chime in with my experience.

Sounds like you are doing a lot of reading and thinking. In the end, you should be positive about your choice and not fret about it any more. You are choosing from good options -- a heck of a lot better options than the one of doing nothing.

 

[geebee]

Dewayne,
One of the things you need to understand is that even though 1%/year equates to 20% over 20 years in simple math, the odds are still only 1% per year. It does not mean that in 20 years you have a 20% chance that year of a bleeding problem. It is not the fact that in 20 years you would have a 15% chance of complications from a surgery OR a 20% chance of a bleeding incident.
This is not to imply what choice you should make in a valve. I just wanted to make sure the facts were understood. I have been on coumadin for over 25 years and have never had a major bleeding incident. I do not consider myself as having a 25% chance of a problem; I still think in the 1% area. Also, a-fib is really not something that can be predicted. My heart was in excellent shape going into my third surgery from an arterial standpoint and was only slightly enlarged (almost in the normal range) yet, I developed a-fib a few days after surgery which went into chronic a-fib 2 years ago.
Just sharing my experience which, of course, is just one person in the vast realm of valve patients but stuff does happen that may not be statistically "normal".
I think the two valve choices your surgeon gave you are excellent ones. You just now have to decide how you want to roll those proverbial dice.

 

[Ross]

Dewayne,
One of the things you need to understand is that even though 1%/year equates to 20% over 20 years in simple math, the odds are still only 1% per year. It does not mean that in 20 years you have a 20% chance that year of a bleeding problem. It is not the fact that in 20 years you would have a 15% chance of complications from a surgery OR a 20% chance of a bleeding incident.
This is not to imply what choice you should make in a valve. I just wanted to make sure the facts were understood. I have been on coumadin for over 25 years and have never had a major bleeding incident. I do not consider myself as having a 25% chance of a problem; I still think in the 1% area. Also, a-fib is really not something that can be predicted. My heart was in excellent shape going into my third surgery from an arterial standpoint and was only slightly enlarged (almost in the normal range) yet, I developed a-fib a few days after surgery which went into chronic a-fib 2 years ago.
Just sharing my experience which, of course, is just one person in the vast realm of valve patients but stuff does happen that may not be statistically "normal".
I think the two valve choices your surgeon gave you are excellent ones. You just now have to decide how you want to roll those proverbial dice.

Thank you. You saved me from posting the samething!

 

[Mary]

DeWayne,
Thanks for posting your surgeon's responses to your questions. You did exactly what we suggest when you asked him to clear up some issues that you were still undecided about. Obviously you are an intelligent man searching for an answer that is right for your circumstances. If you are leaning towards a mechanical valve, and the surgeon suggests a St. Jude's, then I would probably go with his recommendation.

The question of developing afib after surgery keeps popping up in this thread, but you are having your aortic valve replaced and according to published studies, the chances of developing afib after aortic valve replacement are much lower than if you've had your mitral valve replaced.
I've resurrected one of Tobagotwo's posts for you to read. He's on vacation or else he probably would have chimed in himself! His post is in italics.


It is important to differentiate between afib developing after mitral valve replacement and afib development after aortic valve replacement.

It's important to separate temporary bouts of postsurgical atrial fibrillation from perseverent or repetitive afib. A large percentage of patients have bouts of afib right after OHS. And some postop afib patients require external conversion. However, the bulk of it is only temporarily, and happens a limited number of times from the initial insult of the surgery.

People are also commonly put on Coumadin or Plavix for three months after surgery for arrythmias and to avoid clotting from the healing tissue. It's the AHA/ACC standard treatment. The number of VRs who leave the hospital on Coumadin is not at all representative of the number who remain on life-long anticoagulation therapy. I have seen medical literature that doesn't delineate between long- and short-term ACT, and some of that may be reflected in numbers in soem posts.

As an example, I had afib for most of my second night after surgery (I converted on my own after about seven hours). However, it didn't happen again. I was already on a three-months Plavix course from the surgery to avoid clots, but was not changed over to warfarin. (In fact, the Plavix was even dropped at about six weeks.)

Another doctor might have put me on warfarin for six months, just to be sure. I would have been described as having been prescribed warfarin ACT for atrial fibrillation. However, it would not have been a lifetime journey.

Additionally, the difference between the afib effects of mitral and aortic valve replacement surgery are substantial. Those with mitral valve issues and MVR are deemed 29:1 more likely to develop afib by the article mentioned above. These figures are being mixed in our discussions. When referring to AVRs, those figures are inflated by 2800%.

And the over-80 age effect is startling. Half of all afib sufferers.

Is the risk of lifelong ACT there when you have tissue AVR? Yes. But it's quite a small risk. Is the risk there for tissue MVR? Definitely. Although it's still less than 1 in 3, it's substantial.

Does the risk increase with further surgeries? It would make sense to believe so. It's more insult to the heart. Then again, perhaps the percentage is actually less on the second surgeries, as most of those who were going to get it may have done so the first time around. Of couse, you're older by second surgery (hopefully), so that might affect your odds, too.

If you look at the makeup of the posting VR.com membership, you find that many linger to give and receive advice and information regarding warfarin use. Yet the number of tissue valvers who indicate that they personally are on ACT is minute. Most references to tissue valvers on ACT even in this thread are of the "I know a guy who..." variety. Not invalid, but, well, reaching.

I'm not at all pointing to that to say ACT with tissue is rare or doesn't exist, but to lend observable credibility to the numbers in the earlier-mentioned report. AVR 1%; MVR 29%; regardless of valve type. As far more MVRs are done with mechanical valves than tissue, the lack of a larger number of tissue-MVR-on-ACT responses would not seem out of kilter with those figures.

 

[Karlynn]

Yes, I'll echo. There is a 1 - 2% chance per year, but the doctor was incorrect when he said it was cummulative. We had a thread discussion (that got very complicated and hurt my brain), but this was basically the bottom line.

Edit - refer to link Mary provides below..

 

[Mary]

Karlynn,

Did you mean this one?

http://www.valvereplacement.com/forums/showthread.php?t=16604&highlight=statistics+coumadin+bleeding+events

 

[geebee]

Just to be clear, I was responding to DeWayne's question about a-fib, not bringing it up again for no reason.

 

[Karlynn]

Karlynn,

Did you mean this one?

http://www.valvereplacement.com/forums/showthread.php?t=16604&highlight=statistics+coumadin+bleeding+events

Yup- that's the one.

 

[KMS]

You're in a good position

You're in a good position

DeWayne -

So many of us can identify with your search. Many of us logged lots of hours here on VR and other sites, trying to make an informed decision.

You've got two good recommendations from your surgeon. You really can't go wrong with either. Trust your instincts and get to a peaceful place with your decision...and you'll do just fine.

Warm regards,

Kristine

 

[Dennis S]

Apples & Oranges

Apples & Oranges

I don't think your doctor has a very good handle on the statistical issue. To help someone use this as one factor in deciding what choice to make, several things need to be considered:

1. The 1% risk is most definately not cumulative in the sense that 20% of coumadin users would have a stroke after 20 years.

2. Coumadin management has improved so much in recent years that there is a good chance the 1% risk doesn't apply to people currently taking coumadin as the result of a mechanical valve.

3. I understand him to say you will have a 1% risk of stroke for each year you live with a mechanical valve. He seems to be implying that you would have no risk of stroke if you don't have a mechanical valve, and we all know that people do have strokes with AND without mechanical valves. This is something I have wanted to see addressed for some time. Everyone in the population has some risk for stroke. Probably (just guessing) any type of valve replacement will, (to some degree unknown to me) increase stroke potential. In addition, the majority of people who have heart valves replaced fall in the older portion of the population. They are more likely to have a stroke in any given year simply because of the age group they are a part of. So if you want to inform people as to additional stroke danger as the result of a mechanical valve, you really need to tell them the extent to which a mechanical valve will INCREASE the stroke danger they already risk-first as a part of the general population, and second as part of the sub-set of that population that has had a heart valve replaced.

 

[Ross]

3. I understand him to say you will have a 1% risk of stroke for each year you live with a mechanical valve. He seems to be implying that you would have no risk of stroke if you don't have a mechanical valve, and we all know that people do have strokes with AND without mechanical valves. This is something I have wanted to see addressed for some time. Everyone in the population has some risk for stroke. Probably (just guessing) any type of valve replacement will, (to some degree unknown to me) increase stroke potential. In addition, the majority of people who have heart valves replaced fall in the older portion of the population. They are more likely to have a stroke in any given year simply because of the age group they are a part of. So if you want to inform people as to additional stroke danger as the result of a mechanical valve, you really need to tell them the extent to which a mechanical valve will INCREASE the stroke danger they already risk-first as a part of the general population, and second as part of the sub-set of that population that has had a heart valve replaced.

I was just talking about this yesterday to someone in a PM.

Simply having the surgery carries a larger risk of stroke then taking the drug, but no one ever mentions that.

 

[RCB]

Dennis's Points

Dennis's Points

I don't think your doctor has a very good handle on the statistical issue. To help someone use this as one factor in deciding what choice to make, several things need to be considered:

1. The 1% risk is most definately not cumulative in the sense that 20% of coumadin users would have a stroke after 20 years.

2. Coumadin management has improved so much in recent years that there is a good chance the 1% risk doesn't apply to people currently taking coumadin as the result of a mechanical valve.

3. I understand him to say you will have a 1% risk of stroke for each year you live with a mechanical valve. He seems to be implying that you would have no risk of stroke if you don't have a mechanical valve, and we all know that people do have strokes with AND without mechanical valves. This is something I have wanted to see addressed for some time. Everyone in the population has some risk for stroke. Probably (just guessing) any type of valve replacement will, (to some degree unknown to me) increase stroke potential. In addition, the majority of people who have heart valves replaced fall in the older portion of the population. They are more likely to have a stroke in any given year simply because of the age group they are a part of. So if you want to inform people as to additional stroke danger as the result of a mechanical valve, you really need to tell them the extent to which a mechanical valve will INCREASE the stroke danger they already risk-first as a part of the general population, and second as part of the sub-set of that population that has had a heart valve replaced.

Dennis's example points out very clearly what is the problem with quoting statistics. Most M.D.'s don't get a course in advanced biostatistics and don't
really understand research interpretationseek: they are not the Gods they would have us believe). That is why they employ a biostatistician to keep them out of trouble. The 1-2 % figure that they quote
is usually includes both stoke and bleeding events, which range from very mild to extreme but the distribution is a Poisson (with a long tail) and not Gaussian (a bell curve). The statistic is weighted more in favor of bleeds than a stroke. You can’t state the problem anymore clearly than he has in his last sentence.

He also right on the age group problem. Fully 2/3 of the people who have valve surgery are over 65 years old. They have an inherent greater risk for stoke even with out replacement valve surgery. There is also some evidence to show that warfarin reduces the expected rate of having a stroke due to a clot below that of someone not on ACT above the age of 65-which if you think about it, is common sense.

To the good doctor’s point about AF and to Mary reposting of Tobagotwo’s post which I had not seen before, I offer this study and let you decide:

http://content.onlinejacc.org/cgi/content/full/44/3/667

 

[MarkU]

To further RCB's points, my surgeon told me prior to my AVR that there was a 1-2% mortality risk with the surgery, but that was based on a statistical population heavily weighted with 72-year-old couch potatoes while I was an active and otherwise healthy 47-year-old.
That statistical point is re-enforced every time I go to my Coumadin clinic, where it seems like I'm the only one not using a walker or wheelchair.
He did point out that the risk of re-surgery was cumulative due to the effects of scarring, pump time, and other complications symptomatic of advancing age.

Mark

 

[Superbob]

I think you've gotten a keen analysis of the statistical picture from Dennis, RCB, Ross, and Mark.

I am no expert in statistics myself but I'm wondering if medical schools require future physicians to take a course in statistics. If not, they should.