Society of Thoracic Surgeons Risk Calculator

[Karlynn]

For a different perspective, try reading this thread from the ACHA site. These are people who have undergone heart reops and have had to choose which valve type as adults.

http://www.achaheart.org//boards/viewtopic.php?t=2159&start=0

I'm thinking it was the right thread that I read. I didn't really anything different from what we read here. Unfortunately, I also read some of the same myth about warfarin that we get here too.

Hey Cort and Lyn, we knew you cheated on us - but this was proof!!!! You've been busted!

I think that the valve choices and surgical outcomes of places like CCF, which manages thousands of VRs and other cardiac surgeries a year, is mightily important information... probably more important than the experience of any small group of non-randomized individuals when it comes to the real choices faced by those of us in line for surgery.

I agree somewhat, but still feel that we also need to acknowledge that even the best facilities have their biases and at 11% - that's a very strong bias and it's appropriate to question why.

 

[Lynlw]

I'm thinking it was the right thread that I read. I didn't really anything different from what we read here. Unfortunately, I also read some of the same myth about warfarin that we get here too.

Hey Cort and Lyn, we knew you cheated on us - but this was proof!!!! You've been busted!





shh don't say anything, but i am cheating on them by coming here later lol

 

[Karlynn]

"Hmm...

All 3 of my surgeries have been with pig's valves."

3 operations already. Wow! this person must be young. I wonder how long each one lasted.

Yep! It was our own Cort. And he is a young whipper-snapper!

 

[Lynlw]

Yep! It was our own Cort. And he is a young whipper-snapper!

I just wanted to add alot of the members there that have had several tissue valves already, isn't necessarily that anything went wrong with the valves, just they they had the first couple surgeries as children and out grew the valves in alot of the cases,
Justin has only had one valve (in 4 surgeries) only because his surgeons was of the opinion, that since you don't really need a pulmonary valve, to just leave it out until the kids were close to fullgrown, so until last year Justin didn't have a pulmonary valve, otherwise he probably would have been on his 2nd or 3rd valve by now at 18, lyn

 

[Karlynn]

shh don't say anything, but i am cheating on them by coming here later lol

Shameless, simply shameless!

 

[Mary]

I'm thinking it was the right thread that I read. I didn't really anything different from what we read here. Unfortunately, I also read some of the same myth about warfarin that we get here too.
QUOTE]

You didn't notice that although they had previously undergone open heart surgery that they were willing to have a tissue valve implanted and face certain surgery again?
I personally believe that speaks to the experience that they've had with open heart surgery, and is more credible than the experiences of people who have only undergone one. And yes, I include myself in the "one" category.

 

[StretchL]

I... still feel that we also need to acknowledge that even the best facilities have their biases and at 11% - that's a very strong bias and it's appropriate to question why.

I suspect that CCF and Pettersson's answer would be, again, "Today the risk associated with a valve reoperation should compare favorably with the accumulated risk of anticoagulation."

It's a pretty simple statement. I suppose each of us can decide to either agree with it, disagree with it, or something in between.

 

[Ross]

I suspect that CCF and Pettersson's answer would be, again, "Today the risk associated with a valve reoperation should compare favorably with the accumulated risk of anticoagulation."

It's a pretty simple statement. I suppose each of us can decide to either agree with it, disagree with it, or something in between.

Yes I would agree. I value life a heck of a lot, so I'm not one to gamble with it. Some people are and that's fine I suppose. Maybe I just want them to realize that I do care?

 

[Lynlw]

I'm thinking it was the right thread that I read. I didn't really anything different from what we read here. Unfortunately, I also read some of the same myth about warfarin that we get here too.

You didn't notice that although they had previously undergone open heart surgery that they were willing to have a tissue valve implanted and face certain surgery again?
I personally believe that speaks to the experience that they've had with open heart surgery, and is more credible than the experiences of people who have only undergone one. And yes, I include myself in the "one" category.

I hope this makes sense how I wrote this, I kept rewording it and got myself confused lol)
I've often wonderred how much of a part, the fact that surgeons that specialize in congenital heart defects are more experienced in doing numerous redos on the same heart compared to an "regular adult CT surgeon" (for lack of a better phrase) that mainly does surgery on people that "only" have one or 2 heart surgeries in their lives play. Since CHd surgeons routinely deal w/ adhesions and all the other problems that occure in multiple surgeries, i'm sure it has some effect on outcomes and how they compare the mech vs tissue concerns.

 

[mtkayak]

I hope this makes sense how I wrote this, I kept rewording it and got myself confused lol)
I've often wonderred how much of a part, the fact that surgeons that specialize in congenital heart defects are more experienced in doing numerous redos on the same heart compared to an "regular adult CT surgeon" (for lack of a better phrase) that mainly does surgery on people that "only" have one or 2 heart surgeries in their lives play. Since CHd surgeons routinely deal w/ adhesions and all the other problems that occure in multiple surgeries, i'm sure it has some effect on outcomes and how they compare the mech vs tissue concerns.

I'm guessing you might have to seek another surgeon possibly in the future when you finally need a reop as well. Say you have a reop 15 years down the road and the surgeon you used has since retired (in my case both have retired). So, yes, you might have to seek a CHD surgeon who specializes in reops. Adhesions, pannus, can be a problem. That was one my surgeons biggest arguement, that the scar tissue can and will be unpredictable in which way it grows. The chance of valve (mechanical) encroachment is low but what about where it grows on the pericardium, or around the heart. What if it adheres to the strenum. He compared scar tissue to this: "Imagine throwing a plate of sphagetti against the wall". We all knows what happens, it creates a big mess. In additional not knowing which way the spahgetti will form on the wall. It does not grow uniformly. Can you cut some of it out? sure. How much can you cut and where don't you cut. It could be like weeding through a jungle. Each reop can get messier and messier thus creating risk.

 

[Mary]

Mike,
I want to mention that you've got your last reply looking like the quote is mine, but actually it's Lynn's.

However, I will address one specific point you made in your post.
I had pericardial scarring and constriction after my first bovine implant (it can happen after any OHS, including CAB), and I'm trying to gain enough time before resurgery to coincide with my bovine needing replacement. I'm not happy about it, but I'm thankful that I will be facing surgery with a bovine valve rather than a mechanical in place. Why? No INR issues. Anticoagulation can be a big issue with re-ops.

 

[StretchL]

Another Evening Shot to Hell

Another Evening Shot to Hell

He compared scar tissue to this: "Imagine throwing a plate of sphagetti against the wall". We all knows what happens, it creates a big mess. In additional not knowing which way the spahgetti will form on the wall. It does not grow uniformly. Can you cut some of it out? sure. How much can you cut and where don't you cut. It could be like weeding through a jungle. Each reop can get messier and messier thus creating risk.

Well there goes my plans for Italian tonight...

 

[Lynlw]

I'm guessing you might have to seek another surgeon possibly in the future when you finally need a reop as well. Say you have a reop 15 years down the road and the surgeon you used has since retired (in my case both have retired). So, yes, you might have to seek a CHD surgeon who specializes in reops. Adhesions, pannus, can be a problem. That was one my surgeons biggest arguement, that the scar tissue can and will be unpredictable in which way it grows. The chance of valve (mechanical) encroachment is low but what about where it grows on the pericardium, or around the heart. What if it adheres to the strenum. He compared scar tissue to this: "Imagine throwing a plate of sphagetti against the wall". We all knows what happens, it creates a big mess. In additional not knowing which way the spahgetti will form on the wall. It does not grow uniformly. Can you cut some of it out? sure. How much can you cut and where don't you cut. It could be like weeding through a jungle. Each reop can get messier and messier thus creating risk.[/QUOTE]

I wasn't necessarily talking about Justin's surgeon, I was talking about surgeons that specialize in treating CHD have more experience in redos in general, since many of the repairs take 2-3 surgeries right from the start. Yes we already dealt w/ having the surgeon that did his first 3 surgeries retire, so his last surgery was done by a different surgeon.(and actually the year before the bottom few inches of his sternal scar was reopend to remove his malfunctioning pacer out of his abdomin, and that was a different surgeron too. Justin's heart WAS attatched to his sternum w/ scarring, so alot of our discussions w/ surgeons and cardiologists when we were deciding who to have operate was about how much experience they had w/ cases like his and what their plan would be. Are we happy that he will need more surgeries thru out his life? no but that's the reality of many of the CHDs. so you just make the best choices, pray and help raise money for research. right now, we are hoping the research they are doing growing conduits and valves out of patients stem cells pans out, and hopefully something like the film they are having trials w/ that i posted about the other day, will help others that will need more than one heart surgery,

 

[Karlynn]

I suspect that CCF and Pettersson's answer would be, again, "Today the risk associated with a valve reoperation should compare favorably with the accumulated risk of anticoagulation."

It's a pretty simple statement. I suppose each of us can decide to either agree with it, disagree with it, or something in between.

I don't think we really are as far off here as you think. It is a simple statement - that doesn't reflect in their surgical stats. My pasts post have said that I would agree with the fact that ACT and reoperation is pretty much of a wash statistically. My question is: If that statement is saying that ACT risks and reoperation risks are basically the same - then why only 11% mechanical at CCF? Does anyone else see that and go "huh"? My point, which might not have been clear isn't that mechanical is better (I've recommended tissue to others), my point is that mechanicals are better for some and when a hospital or doctor has an 11% use of mechanicals (depending on age break down, and I'd still like to find that.) then why the seemingly huge bias? What information are they operating off of that causes their surgical stats to make it look like they believe that reoperation is a much better risk? And at 11% that's basically what the stat tells regardless of what one of their esteemed surgeon says. And I feel that some people here believe that to be true as well, hence the highlighting of the stats to begin with.

If people disagree with my thoughts that the statement quoted above doesn't line-up with their surgical stats, then we'll just have to agree to disagree. And I want CCF to give me a call this week to tell me why the disparity?

Let me also say that I consider the valve choice for children to be a much more complicated thing. As I've stated in the past - parents of children with CHD are making choices with their doctors to get them through to adulthood with the heart in the best possible shape they can. I would imagine that parents and doctors of CHD are trying to also accomplish this task with as few surgeries as possible and as few medications as possible and that is a very difficult area that we adults with valve issues can only begin to imagine. Quite often, these CHD children are dealing with more than just simple valve issues that adults deal with. So to say that there are these ACHD people with multiple surgeries apparently doing well so it must be okay, is thinking of it in simplistic terms when simplicity is not inherent in CHD patients who have dealt with it since birth or childhood. "Doing well" in their terms may mean something all-together different to them then, lets say, Mtnbiker or Mark. It's subjective to all and something none of us can predict. I know for pretty much a certainty that reoperation for me will not be as simple as it would be for some. And since I had my valve installed at 32, the chances are probably pretty good that I'll have to have another surgery.

 

[Ross]

Mike,
Anticoagulation can be a big issue with re-ops.

Squeeze me, how so?

 

[afraidofsurgery]

Pick your poison with your stats

Pick your poison with your stats

Well one thing I want everyone to consider, regardless or stats and numbers, this is not an Ice cream and Cake thing for anyone. Some will die in the attempt. To those, none of the stats, professional opinions or any of that, mean a thing. This is serious business and not to be taken lightly in anyway.

I agree with Ross. Since data from clinical trials is so heterogeneous (patient populations can be very diverse in age, overall health, other medical conditions, etc.) interpretation of study statistics is something some people spend a lifetime doing - they are called the medical departments of pharmaceutical and medical device companies. I've read 'raw' clinical reports and written articles from 600 page safety studies when I worked in med ed, and believe me it's no easy task.

So the arguments are not about the interpretation of clean data, it's really about personal preference - pick your poison. Personally, I would die if I did not have surgery on my leaky aortic valve. I prefer to manage coumadin and risk a bleeding event (that may or may not lead to death) than take on the risk of death from another open heart surgery. Period. Note how I have totally ignored all the other risks and complications that are possible - it boiled down to just a few siimple things for me.

Other people may like the fancier surgeries, that may or may not hold for long periods of time. OK that's fine with me, but trying to debate whether risk A is greater than or less than risk B is a moot point - one simply can't know exactly, but can only weigh the approximate risks against a personal preference and set of values.

 

[Mary]

Squeeze me, how so?

Dear How So,
If you consider that going in for a colonscopy is tricky, then what would you call having your pericardium removed, if on coumadin, with a mechanical valve?
Sincerely,
Your main squeeze

 

[mtkayak]

Mike,
I want to mention that you've got your last reply looking like the quote is mine, but actually it's Lynn's.
However, I will address one specific point you made in your post.
I had pericardial scarring and constriction after my first bovine implant (it can happen after any OHS, including CAB), and I'm trying to gain enough time before resurgery to coincide with my bovine needing replacement. I'm not happy about it, but I'm thankful that I will be facing surgery with a bovine valve rather than a mechanical in place. Why? No INR issues. Anticoagulation can be a big issue with re-ops.

Dear How So,
If you consider that going in for a colonscopy is tricky, then what would you call having your pericardium removed, if on coumadin, with a mechanical valve?
Sincerely,
Your main squeeze

Sorry I was talking about having multiple surgeries to replace tissue valves. Hope I didn't confuse anybody. I imagine if you had to have a mechanical valve replaced, you would come off the Coumadin days before your reop. After all, you are getting a clean slate with a new valve if that were the case.

 

[mtkayak]

I wasn't necessarily talking about Justin's surgeon, I was talking about surgeons that specialize in treating CHD have more experience in redos in general, since many of the repairs take 2-3 surgeries right from the start. Yes we already dealt w/ having the surgeon that did his first 3 surgeries retire, so his last surgery was done by a different surgeon.(and actually the year before the bottom few inches of his sternal scar was reopend to remove his malfunctioning pacer out of his abdomin, and that was a different surgeron too. Justin's heart WAS attatched to his sternum w/ scarring, so alot of our discussions w/ surgeons and cardiologists when we were deciding who to have operate was about how much experience they had w/ cases like his and what their plan would be. Are we happy that he will need more surgeries thru out his life? no but that's the reality of many of the CHDs. so you just make the best choices, pray and help raise money for research. right now, we are hoping the research they are doing growing conduits and valves out of patients stem cells pans out, and hopefully something like the film they are having trials w/ that i posted about the other day, will help others that will need more than one heart surgery,

I know, sorry, I was just making general statements myself, not referring to Justins situation. I pray that research will find a solution.

 

[Ross]

Dear How So,
If you consider that going in for a colonscopy is tricky, then what would you call having your pericardium removed, if on coumadin, with a mechanical valve?
Sincerely,
Your main squeeze

They wouldn't remove it until they've given you either plasma or Vit K, in any event, you would be coagulated before they would attempt it. Either of these will bring INR down to zelch in no time. If they use Vit K, it's difficult to get back in range for a long time afterwards, so plasma is the choice in most circumstances. This was even true for my recent GI bleed. Right away, 2 units of fresh frozen plasma, followed with whole blood and fluids. Once they were convinced the bleeding was stopped, the started me on a Heparin drip and watched. When nothing else was found, they started me back on Coumadin and I was in the safe hospital release range (2.0) within 3 days.