A bit confused

[Randy & Robyn]

I have now talked with two well-regarded surgeons, both with impeccable reputations and am getting two distinctly opposing opinions.

They both admit I have a 70% chance of success with an aortic valve repair and either of them could perform one. However, one of them (the optimistic one, I think) told me it could potentially last my lifetime (I'm 36 now). The other one estimates 10 years at best. That is quite a spread.

They both stated that I need a second option in case the repair fails. The optimistic surgeon told me he would use the Medtronic porcine stentless and that I should get twenty years from it because of the latest demineralization and anti-calcification techniques they are using with that particular valve. The other surgeon recommends a mechanical and basically told me the other surgeon was crazy for telling me the Medtronic could last for twenty years. In fact, I get the impression he would put the mechanical option even before the repair.

They both told me that the Ross procedure as a second option would not be viable because of the amount of time that would be spent on the repair attempt. At this point, I would rather try a repair than the Ross so that much is settled.

Yet despite all of my research and consultations with experts, this decision making stage is NOT getting any easier.

Randy

 

[Ross]

And the worst part of it is, your doing all this research and making a choice and still may not end up with what you want. Few people do get it their way. It seems your anatomy just doesn't like the decisions you make.

Randy have you ever thought about checking with Toby Cosgrove at The Cleveland Clinic?

 

[Randy & Robyn]

And the worst part of it is, your doing all this research and making a choice and still may not end up with what you want. Few people do get it their way. It seems your anatomy just doesn't like the decisions you make.

Randy have you ever thought about checking with Toby Cosgrove at The Cleveland Clinic?

I've thought about that, Ross. As well as the possiblity, remote as it is, that I may not even live to enjoy the choice that is made.

Regarding the Cleveland Clinic, my cardiologist referred me there first. He gave me the name of a cardiologist there who wanted to see me in person. Since I live in Wisconsin, I was hesitant to make the trip, even though it is only a few hundred miles, without at least a phone conversation. However, after leaving numerous messages with his office I have received no return phone call and am a bit miffed about it, to be honest. My guess is he wants the big bucks from an office visit.

I know I shouldn't let my opinion of one cardiologist taint my impression of one of the finest cardiac hospitals in the world. I will try to get in touch with Dr. Cosgrove. Thanks for the advice, Ross.

 

[Ross]

Delose (Toby) Cosgrove is a Surgeon, not a Cardiologist. He does return or I should say his office returns messages. Their cardiology department up there is about as messed up as most every where else. It's like some universal law with these guys to never call a patient. I don't know why, but it is.

 

[Tom F.]

I had an aortic valve repair done in connection with the replacement of a small section of my aorta that had an aneurysm. My aortic valve was normal in all respects, just damaged some by the aneurysm. When I went through my process of picking out a surgeon I quickly discovered that really good docs can and do disagree sometimes on what can and should be done.

I would take the time and search the internet for everything you can read about aortic valve repairs, there is a lot out there. Then you can reach your own comfort level.

 

[tobagotwo]

I'm most definitely not a reknowned surgeon, and my reputation...well...

...but I have a free opinion.

I would agree with the estimation that the Mosaic would not be likely to make 20 years in a 36-year old. The Perimount Magna might come closer, but I wouldn't bet the farm on it, either.

The fact is that there is no track record for your age group for the anticalcification-treated valves, and the records pre-anticalcification don't lean toward twenty year lifecycles. They should last longer than the untreated valves before them, but there is no way to tell until enough people your age try them.

For balance, there's no track record of any mechanical valves lasting in place for more than 30 years at this time, either.

In a 50+ patient, the chances would be pretty good, but calcification is still rampant in most 36-year-olds. If you would feel cheated if it lasted closer to fifteen years, then I would consider carefully.

Your likely course on xenografts, if you have no connective tissue problems associated with your BAV, is surgery again at about fifty, then again at about seventy. That's barring massive improvements in valves (a perennial sucker's bet).

That's doable, but you should be thinking in terms of reops over your lifetime. Two more. It's not a bad timeline, and actually may have some strategic advantages in terms of age-at-reops over getting a full twenty out of this first valve. If you're up for it, you have a plan.

Of course, you could switch over to a mechanical at fifty, if you change your mind.

I don't disagree with a xenograft strategy at all. I am a fan of the freedoms allowed by tissue valves, but options should be assessed as coldly as possible, to be sure we truly take in what we're signing up for.

We all take our lives in our hands and say, "This is what I can live with" when we choose a valve. As long as we know what "this" is, then we will have made the best choice for ourselves.

Best wishes,

 

[Randy & Robyn]

Tom, you can believe that I am doing my research. As Ross suggested, I am going to contact Dr. Cosgrove at Cleveland Clinic and might even try David Tirone in Canada who is purported to be the leading surgeon in the world for valve repair, although I can just imagine the insurance hassles if I wanted to go there.

Bob, you certainly have some valid points. I think even fifteen years would be quite appealing. If only I knew I could tolerate the surgery well, I would definitely go with a tissue valve. That's the real catch, isn't it? You just don't know. It is so easy to delude oneself into thinking that in ten or fifteen years they will have developed the perfect valve replacement and much safer surgical procedures. While possible, it is not very likely.

Thank you all for your input. It helps alot to hear other opinions from people much closer to the subject than I am at this point.

Randy

 

[PapaHappyStar]

Hi Randy,

you might have seen this, an AV repair comparison and review -- these guys are at rush in chicago -- they analyze a prolapsing leaflet AV and its repair:

http://ejcts.ctsnetjournals.org/cgi/content/full/25/1/6

Regards,
Burair

 

[RCB]

Balance?

Balance?

For balance, there's no track record of any mechanical valves lasting in place for more than 30 years at this time, either.

Let's examine that statement:

1. 30 years ago they were still using first generation valves and only had begun the use of 2nd generation valve. Some are still in patients today, if they are still alive and have had no additional valve surgery.

2. Surgeon almost always replace these old valve in favor of newer valve
not because they wear out but for other reasons having nothing to do with the valve wear!

3. There have been several articles written by surgeon who have replaced
these older generation valve show how little ware had taken place.

4. Given more time (you need to have time- before you can count time) I think a lot of the those people who had 2nd generation valves implanted and
they are still relatively young and have healthy heart tissue will indeed go beyond 30 year or even 40. We have several member on this site that are already approaching that milestone.

5. I'm not sure what you mean by a track record but if you mean a clinical
study, well nobody funds a study of this type to prove the durability of a valve they are no longer promoting. Certainly the "track record" of early tissue valve 30 years ago is horrible compared to the mech. valves of the day.

6. If we look to the members of this site, you will see people approaching
30 years. Some have had their valve replaced, but rarely because the valve wore out. Of the few that are coming close to 30 years, nobody is rushing out to get the latest version.

7. The "track record" of the upper limits of tissue valves is pretty well defined especially if you are younger. The latest generation of Mech. valve
upper limits will be most likely never be tested even in the very young.

I think these statement more appropriately speak of the record of mech. valves.

 

[LUVMyBirman]

How about Dr. McCarthy (formally of Cleavland Clinic)

He is excellent as Ross will attest. Now practicing at Northwestern in Chicago. Just a short distance from WI. He is my first local choice if needed.

Wishing you all the best in your decision process Randy.

 

[RCB]

Although, McCarthy was my first choice for valves and Maze work, I don't
believe valve repair is his strong point. He is one of the world's best surgeons,
but I think Cosgrove and Tirone have much more experience in this special area of expertise.

 

[tobagotwo]

The point most often brought up in terms of length of useful life for newer-generation xenograft valves is that they haven't been been out long enough to have a track record of how long they will actually last. This is something I carefully acknowledge in my postings. A few of the old type have gone well past the expected, but we're looking for some solid numbers of real people, with real 80%-at-25-year experience.

Not because it doesn't make sense that they will last longer, just that they haven't been out long enough so that anyone could have lived with one that long yet. The anticalcification processes are only a couple of years old. 25 years is still at least 23 years away - although even the old style bovine valves are still chugging at 22-years plus in many people.

The same is true for 30-year mechanical valves, any way you want to cut it. No 80% at 30 years. No 20%, No 10%. Not even 1%. No physical proof is no physical proof. Sauce for the goose is sauce for the gander.

The Medtronic and Edwards corporations marketers say their new valves will last 25 years. The St. Jude Corporation and Carbomedics marketers say their new valves will last 100 years. No proof for either, except lab testing for both. Level field. No "yeah, but..."s

Disagreement is inevitable, and very positive overall. It keeps us from becoming content in our understandings of a constantly-shifting landscape of technical updates and new product ventures. There may be an answer out there right now, from a far-fetched-sounding marketing organization. There may also be another Silzone out there, from a trusted brand. Trying to apply similar rules of inquiry to different solutions where reasonable just makes sense.

Best wishes,

 

[Ross]

Bah, my newly designed Ross valve will last 10,000 years and I have proof. I'm the oldest living recipient of this valve, so there!

 

[Toronto Guy]

Tom, you can believe that I am doing my research. As Ross suggested, I am going to contact Dr. Cosgrove at Cleveland Clinic and might even try David Tirone in Canada who is purported to be the leading surgeon in the world for valve repair, although I can just imagine the insurance hassles if I wanted to go there.

Bob, you certainly have some valid points. I think even fifteen years would be quite appealing. If only I knew I could tolerate the surgery well, I would definitely go with a tissue valve. That's the real catch, isn't it? You just don't know. It is so easy to delude oneself into thinking that in ten or fifteen years they will have developed the perfect valve replacement and much safer surgical procedures. While possible, it is not very likely.

Thank you all for your input. It helps alot to hear other opinions from people much closer to the subject than I am at this point.

Randy

Don't believe anyone who promises 20 years on a tissue valve

If, as and when calcification issues are resolved in tissue valves, the market for mechanicals will surely diminish

I enjoyed 13 blissful years with my Toronto SPV (stentless porcine valve) invented and implanted by Tirone David

He replaced it just a few months ago with a clicker - St Jude HP

Sometimes the decision isn't ours to make

Get the best surgeon available and stay positive

Good luck

Phil

 

[RCB]

Prove that statement Tobagotwo!

Prove that statement Tobagotwo!

Because their is no "Physical proof" doesn't mean they aren't out there!
So what is your point- Mech. valves don't last that long or that patients don't live long enough to have old valve. Just look at the number of people on this site that had heart valve surgery over 30 years ago, pretty small
sample space. With small samples, you don't get data points that would represent a "physical proof". It is a clarifying example of a statistical aberation.
By your logic, people who had heart valve surgery over 40 years ago don't exist because there is no "physical proof" according the your sources. Well
HELLO Tobagotwo! I'm RCB, glad to meet you- I'm alive and doing well!
Guess what, I know of others who are alive and had HVS in the early '60s, although they too are not on your "physical proof" radar screen. I have been told stories ( don't want to bore or upset the folks with telling of other peoples heart valve horror stories ) by people who in the period before 1975(30 years ago) didn't have heart surgery because they thought it too dangerous. Many just died. If they were young enought and healthy enough to have surgery back then- that would be your "physical proof"! Four years after my first valve surgery when I went back for a redo, there were still empty beds in the CICU in one of the few hospitals that had a record of successful surgeries. I remember my father asking Dr. Kay why there wasn't more patients jamming St. Vincent Hospital waiting to get this life saving surgery. His answer(which I will never forget because the great doctor was not long on words), "Pure ignorance! People have the beleive that the heart is a vessel for one's soul and should not touched by man." When I went back in 1982 and they had added a whole new busy heart floor, I asked him about that statement. He simply said, "To live,people must overcome their ignorance." It seems to me we shouldn't blame the valves for a lack of durability, because their is plenty of evidence the contrary, but rather the lack of young health patient willing to undergo, what in it's day, was a very, very dangerous surgery!

So, are there people out there who have mech. valves for over thirty years- a very small number, I think yes. Of course, the number of people
who had HVR over thirty years ago is also small- it doesn't mean they don't
exist and your failure to acknowledge that is like stating that I don't exist
because a Google search doesn't show a "physical record" of heart valve
recipeints who had surgery over 40 years ago!

 

[tobagotwo]

What was posted doesn't deny anyone's existence, and has nothing to do with people refusing surgery or their ignorance of its value.

It stated that there is not a full percent known of recipients who have had the same valve in their chest for over thirty years. It doesn't abuse or slander mechanical valves in any way, and certainly not the people who have them. It was brought up in parallel with a similar revelation about xenograft valves.

It is an accurate statement that sheds perspective on a thought process, and is plainly not an attack on any valve type or person.

Best wishes,

 

[RCB]

The fact is that there is no track record for your age group for the anticalcification-treated valves, and the records pre-anticalcification don't lean toward twenty year lifecycles. They should last longer than the untreated valves before them, but there is no way to tell until enough people your age try them.

For balance, there's no track record of any mechanical valves lasting in place for more than 30 years at this time, either.

In the statement above you make a comparison between two events:
1. That a tissue valve might last longer for a certain age group.
2. The lack of a track record for a thirty year old valve.

What I am saying is that it is unfair to compare wishful thinking in the case of tissue valves lasting that long, with the case of lacking of proof that a mech. has not lasted that long. Your standards are like apples and oranges.
You try to show credibility for your position, by implying that no proof
exist(something you can't prove by your "physical proof" standard) for mech.
valves lasting 30 years. How do you know that "not a full percent" heart valve recipient of over 30 years ago don't have the same mech. valve. Show me the study, because I confess my ignorance of such a study.

 

[RCB]

Fyi

Fyi

A quick search of our membership turns up these valvers who will soon
provide Tobagotwo with the "physical proof" of a valve lasting 30 years

Nancy's Joe 1977 ..........28 years
Ticktock 1978 ...............27 years

There is a member, ccrawford who posted a year or more ago about someone he knew who still had one of the old ball and cage valves from the 60's. One must remember that the membership here represents a very small segment of the number of people who have had HVR, especially of the the oldest valver, the ones most likely to have a 30 year old valve.

I know on one of the Maze boards I was on last year, one woman posted
how she was honored by the Starr Insititute in Seattle that year for being one of the longest to survive with one of the very earliest Starr/Edwards valves. Her surgery was in the late '60s. That was a first generation valve.

My hope is that Joe and Ticktock enjoy a long healthy life with their Bjork/Shiley valves. I'm sure even Tobagotwo would agree with that

 

[Granbonny]

Active VR.Com members

Active VR.Com members

I think Karlynn is the oldest St. Jude recipent on this board...She had her's in 1991..13 years and counting ..and Geebee in 1994...10 years ........Both of these ladies are very active posting on this board.....I think the rest of us (mech valvers) who are active members are running 5 years and under? I think JoAnn had one in 1971..but think she had to have a re-do? a few years back?...........RCB..you are correct in saying, wonder how many mech valvers do not know this website exists..,,,This website is like the one I am on for adoptions from Russia... They come on for support during their first referrals, courtdates, questions about medical issues and then..they leave after the final adoption........ Maybe someday, someone will pop in that has had a mech valve longer than Karlynn......except for you..RCB ..I'm coming up 3 years the 25th of this month... and I will be age 65 in June Hope mine will last longer than 30 years..hoping to be able to chase Ross and the other old men around in the nursing home ( Please correct me anyone..if my stats are wrong..) Bonnie

 

[RCB]

Bingo!

Bingo!

15 minute Google search found this:

http://www.webmediainc.com/54157PT/PeshtigoTimes.taf?function=detail&Layout1_uid2=13031

Man gets 32 years out of his DeBake heart valve!

Not too shappy for a first generation design

Boy they sure don't make 'em like that anymore

If anybody lives near this guy, give him a call and invite him in. He truly deserves to be a member of VR.com.