Pannus Growth/On-x discussion

[Bad Mad]

"The On-X valve is the ONLY mechanical valve with leaflet guards to add protection from Pannus Ingrowth. <snip> Pannus ingrowth has not been reported (from 1996 through 2005, when the booklet was published)."


Ignorant to the whole area of Pannus Growth, I would like to pose a question.
Al, you say in those 9 years no incidents have been reported. But at what stage does this usually develop? Correct me if I am wrong, but Aryl's husband's pannus ingrowth only became apparent/problematic 14 years after his mechanical valve was implanted.

I am really intrigued by the perceived benefits of the ON-X to date, but I have to say, your persisitant promotion of the ON-X and the way you post C. Burnetts details at the end of many many posts (even on the same thread) is a little OTT.

Excuse me for my directness but I think it is important to:

1. Tell people of the great benefits of the On-X as regards lower levels of thrombosis etc.

But also

2. Make them aware that the valve is only 10 years old, and there are no long term guarantees over some aspects.

 

[ALCapshaw2]

"The On-X valve is the ONLY mechanical valve with leaflet guards to add protection from Pannus Ingrowth. <snip> Pannus ingrowth has not been reported (from 1996 through 2005, when the booklet was published)."


Ignorant to the whole area of Pannus Growth, I would like to pose a question.
Al, you say in those 9 years no incidents have been reported. But at what stage does this usually develop? Correct me if I am wrong, but Aryl's husband's pannus ingrowth only became apparent/problematic 14 years after his mechanical valve was implanted.

I am really intrigued by the perceived benefits of the ON-X to date, but I have to say, your persisitant promotion of the ON-X and the way you post C. Burnetts details at the end of many many posts (even on the same thread) is a little OTT.

Excuse me for my directness but I think it is important to:

1. Tell people of the great benefits of the On-X as regards lower levels of thrombosis etc.

But also

2. Make them aware that the valve is only 10 years old, and there are no long term guarantees over some aspects.

Dear Mad:

1. I often include a statement to the effect that MY reason for choosing the On-X valve is its claim and propensity for the Lowest Incidence of Clot Formation (Thrombosis) of all the Mechanical Valves on the Market today.

2. I often state that On-X is approaching 60,000 (or has exceeded 55,000) Valves implanted in the World Market over the last 10 years.

SO, WHAT IS YOUR POINT? As I see it, I have addressed the issues you raised.

You also complain that I keep refering people to Catheran Burnett and suggesting they ask for her Information Package. WHAT IS YOUR PROBLEM WITH THIS?

I have learned a LOT from the information provided to me by Catheran and On-X.

There is WAY MORE INFORMATION in that package than I am willing to sit here and transcribe onto personal posts.

SO, I suggest to people who ASK for information that they contact Catheran and ask for her package. WHAT IS YOUR PROBLEM WITH THIS?

Several of our members have cautioned that "she" (Catheran) is motivated to Sell Valves and is therefore biased. They suggested readers find INDEPENDENT SOURCES of information (such as Consumer's Reports).

OK, that is a valid point. SO, do YOU know of any INDEPENTENT SOURCES of information on Mechanical Valves? NO ONE has come forward when I have asked in the past. And, NO ONE has volunteered to form an organization to do an independent study of valves and publish their findings FREE to the public. Surprise, surprise.

I have also posted the Web Sites for the ALL of the Major Valve Manufacturers (in the U.S. Market) and asked if anyone knew of any Contact Person who could or would provide technical information to Patients. NO ONE has provided any such information.

What would you suggest I do DIFFERENTLY when newcomers ASK for information, especially information on the On-X valves, as many have?

BTW, I have also stated repeatedly that the STANDARD St. Jude Valve is the GOLD STANDARD for Longevity and that is my SECOND choice for my pending MVR.

Translation: This (Standard St. Jude Valve) is a GOOD choice for patients who are skeptical of the 10 year (now 11 year) history of the On-X Valve and want a PROVEN Long Life Valve, such as yourself.

HINT: There is NO WAY to have the Latest and Greatest Technology AND a Long Term Proven Technology. At some point everyone must make a CHOICE and Take a Leap of Faith.

Heart Disease (and old age) aren't for Sissies!

'AL Capshaw'

 

[Bad Mad]

Dear Mad:

1. I often include a statement to the effect that MY reason for choosing the On-X valve is its claim and propensity for the Lowest Incidence of Clot Formation (Thrombosis) of all the Mechanical Valves on the Market today.

2. I often state that On-X is approaching 60,000 (or has exceeded 55,000) Valves implanted in the World Market over the last 10 years.

SO, WHAT IS YOUR POINT? As I see it, I have addressed the issues you raised.

You also complain that I keep refering people to Catheran Burnett and suggesting they ask for her Information Package. WHAT IS YOUR PROBLEM WITH THIS?

I have learned a LOT from the information provided to me by Catheran and On-X.

There is WAY MORE INFORMATION in that package than I am willing to sit here and transcribe onto personal posts.

SO, I suggest to people who ASK for information that they contact Catheran and ask for her package. WHAT IS YOUR PROBLEM WITH THIS?

Several of our members have cautioned that "she" (Catheran) is motivated to Sell Valves and is therefore biased. They suggested readers find INDEPENDENT SOURCES of information (such as Consumer's Reports).

OK, that is a valid point. SO, do YOU know of any INDEPENTENT SOURCES of information on Mechanical Valves? NO ONE has come forward when I have asked in the past. And, NO ONE has volunteered for form an organization to do an independent study of valves and publish their findings FREE to the public. Surprise, surprise.

I have also posted the Web Sites for the ALL of the Major Valve Manufacturers (in the U.S. Market) and asked if anyone knew of any Contact Person who could or would provide technical information to Patients. NO ONE has provided any such information.

What would you suggest I do DIFFERENTLY when newcomers ASK for information, especially information on the On-X valves, as many have?

BTW, I have also stated repeatedly that the STANDARD St. Jude Valve is the GOLD STANDARD for Longevity and that is my SECOND choice for my pending MVR.

Translation: This (Standard St. Jude Valve) is a GOOD choice for patients who are skeptical of the 10 year (now 11 year) history of the On-X Valve and want a PROVEN Long Life Valve, such as yourself.

HINT: There is NO WAY to have the Latest and Greatest Technology AND a Long Term Proven Technology. At some point everyone must make a CHOICE and Take a Leap of Faith.

Heart Disease (and old age) aren't for Sissies!

'AL Capshaw'

My problem Al, with all due respect is that you above everyone else seem to go to extreme lengths to promote a valve that you haven't experienced yet yourself. I too, have gotten all the main info. on the ON-X from Catheran Burnett, and it sounds impressive.
I commend you for referring people to CB, but I have often seen this done repeatedly in the one thread, and I find it strange. That's all.

To be honest, as I have said repeatedly in other threads, I want to get the best, balanced picture possible before I make MY choice on whether to have an ON-X, St. Judes or whatever. This isn't scepticism as such, more sensible in my mind. Perhaps this independant study that I came across will be useful:
Excuse me if it's been posted before.

http://icvts.ctsnetjournals.org/cgi/content/full/4/6/588

 

[Ross]

For those of you thinking along the lines as Badmad, as I have been asked by a couple of you, Al is NOT A VALVE REP. He believes highly in Mcritx/On-X valves. Al has asked Hank and I just how to go about changing things so that he doesn't appear to be a salesman, as we had been asked by some also. Fact of the matter is, Al has no other way to convey his feelings on the valves and refers ANYONE to Mrs. Burnett. He encourages each and everyone of you to do the research yourself and see if you don't agree. Hank and I find nothing wrong in the way he's posting this, though it does seem overzealous at times. The man simply believes in the product and feels compelled to draw attention to it from the research that HE has done. Again, you are encouraged to do your own research and arrive at your own conclusions.

I hope that clears up the issue for some of you.

 

[Bad Mad]

Fair enough Ross. Thanks for the clarity.

 

[Ross]

Fair enough Ross. Thanks for the clarity.

Like I said, It had been brought to Hanks and my attention and we've discussed it with Al. We don't see any other way for him to present it or we'd be asking him to do so.

We did have a Valve Rep here one time that did nothing but promote the Perimount valve in each and every post. We banned her after warning her quite a few times, so we wanted to make sure this wasn't going to be an issue with Al.

Thanks for your understanding of the situation.

 

[Susan BAV]

For those of you thinking along the lines as Badmad, as I have been asked by a couple of you, Al is NOT A VALVE REP. He believes highly in Mcritx/On-X valves. Al has asked Hank and I just how to go about changing things so that he doesn't appear to be a salesman, as we had been asked by some also. Fact of the matter is, Al has no other way to convey his feelings on the valves and refers ANYONE to Mrs. Burnett. He encourages each and everyone of you to do the research yourself and see if you don't agree. Hank and I find nothing wrong in the way he's posting this, though it does seem overzealous at times. The man simply believes in the product and feels compelled to draw attention to it from the research that HE has done. Again, you are encouraged to do your own research and arrive at your own conclusions.

I hope that clears up the issue for some of you.

Not for me, really, Ross...since you mention it. He didn't reply to my pointed question, when he could have explained himself when I asked him about it on another thread, where he repeatedly posted the very same contact information in a particularly unusual manner.

But, since you mentioned it and for further clarification, does "not a valve rep," also mean he receives absolutely no compensation?

The On-X may be wonderful; I hope so. It sounds promising and I'm happy to read how well members here are satisfied with it. I'm neither for it or against it and I don't have one so I don't really find it appropriate to promote something I have no experience with.

I would just like to be clear when an advertisement is an advertisement.

 

[Ross]

No, he receives no compensation. If so, that would be an entirely different circumstance and would be dealt with as such.

We would like advertisement to be clear also, but honestly, how is he supposed to present it to new folks? I know we see it all the time and for us, it gets old, but new people don't search threads usually and are oblivious to the info for the most part. If anyone has a better way, lets discuss it. Hank nor I can think of anyway.

Susan to better answer your question, We are going to have to look at these things on a case to case basis. It once was clear cut, but sometimes circumstances make it something else. We'll look at it and into it and go from there.

 

[ALCapshaw2]

Thank you Ross for the clarification.

Here is my dilema.

I have some information (which was supplied by On-X) which shows how the primary mechanical valves compare in Morbid Event Rates. Based on 5 year studies and data submitted to the FDA, the On-X Valves show 1/2 to 1/3 the Morbid Event Rate of the 4 other valves included in the comparison.

Obviously, the older valves have SAVED Many Lives but NONE are PERFECT, including On-X. The early data from the On-X Valves points to a lower Morbid Event Rate than for it's competitors.

I found the report from South Africa to be especially compelling where many (most? I forgot) of the recipients were NON-compliant in their Anti-Coagulation use / monitoring.

Catheran can tell you WAY MORE about all of the data, and where it came from, with Sources. I am NOT comfortable making public announcements about that data and have refrained from doing so, therefore I recommend that readers get their own information packages and make their own conclusions.

I would also like to point out that the On-X designers are well aware of the strengths and weaknesses of their primary compeititors because the Carbon Leaflets (for the Standard St. Jude, CMI, ATS, and On-X) were ALL designed by the SAME PERSON, Jack Bokros, (who is now with On-X) as outlined earlier in this thread.

ONE reason I'm reluctant to post negative data about ANY valves is that I do NOT wish to alarm any of our readers who have those same valves and are doing just fine.

I also have seen and read reports (one from a Medical Journal, others from an Internet Discussion Forum for Surgeons) of Early Valve FAILURES (in the O.R. mostly, but some post-op) of another 'new' valve.

Again, I prefer NOT to alarm recipients who are doing just fine with that same valve. (Part of the problem seems to be proper sizing at the time of surgery. Patients who are doing fine obviously were sized correctly.)

IF ANY of our readers can obtain data from any of the other manufacturers, YOU would be doing a service to your fellow valve patients by providing your contact information to the the members of VR.com in a Public Post.

All I can do is provide the source of MY information which is Catheran Burnett at On-X.

'AL Capshaw'

 

[ALCapshaw2]

Not for me, really, Ross...since you mention it. He didn't reply to my pointed question, when he could have explained himself when I asked him about it on another thread, where he repeatedly posted the very same contact information in a particularly unusual manner.

But, since you mentioned it and for further clarification, does "not a valve rep," also mean he receives absolutely no compensation?

The On-X may be wonderful; I hope so. It sounds promising and I'm happy to read how well members here are satisfied with it. I'm neither for it or against it and I don't have one so I don't really find it appropriate to promote something I have no experience with.

I would just like to be clear when an advertisement is an advertisement.

Susan:

For the Record, I DID answer your question where I had posted Catheran's contact information (would you like me to repeat it here?) when a newcomer had just posted that he HAD contacted Catheran, UNDER his Signature Line, which I had not read. I even apologized for the Confusion but have seen REPEATED references to this issue from YOU. As far as I am concerned, that issue is CLOSED.

If that is not satisfactory to you then I suggest your read and heed YOUR OWN Signature Line:

"Be kinder than necessary, for everyone you meet is fighting some kind of battle." ~Unknown

And for those of you who can't: "Sometimes I can only please one person a day and today may not be your day; tomorrow ain't lookin' real good either."

'AL Capshaw'

 

[Karlynn]

Perhaps a way to keep Al from having to repeat himself with new members, and making it look like he's pushing a particular valve, would be for Al to do a thread on the information he's gathered, plus the contacts he has and it could be made a Sticky in the valve selection forum.

This way, all Al would have to do in replying to a new member is say "See this Sticky on the information I've gathered, in the valve selection forum XXXXXXXX" and give the link for the sticky.

This saves Al a lot of retyping, and keeps suspicious minds at bay.

As long as Al's not getting paid by the company, he's just a fan of the valve, and in my opinion, for very good reasons. But I do understand why some may think his posts are selling a product.

I love the INRatio machine and do a lot of recommending of it. I would hate to have to stop doing so because it looks like I'm selling the product. When we say we believe in something, we also have to back up why we believe in it and then, so others can look into, should give further information on how to obtain XXX. If it's done often, suspicion arises.

This is a site that deals with a very narrow focus - a few valves, a few machines etc. I can see how it appears some things are being pushed, when it's spoken of often. I think we've had a lot of new members who come on already having heard of the On-X and the discussion goes from there.

 

[Susan BAV]

Susan:

For the Record, I DID answer your question where I had posted Catheran's contact information (would you like me to repeat it here?) when a newcomer had just posted that he HAD contacted Catheran, UNDER his Signature Line, which I had not read. I even apologized for the Confusion but have seen REPEATED references to this issue from YOU. As far as I am concerned, that issue is CLOSED.

If that is not satisfactory to you then I suggest your read and heed YOUR OWN Signature Line:

"Be kinder than necessary, for everyone you meet is fighting some kind of battle." ~Unknown

And for those of you who can't: "Sometimes I can only please one person a day and today may not be your day; tomorrow ain't lookin' real good either."

'AL Capshaw'

Sorry you are confusing the issue again Al but this has nothing to do with my signature line. Rather, it is a valid question and which other members have expressed also. Why the public spat? Shall I quote what you posted to Bad Mad also, "What is your problem with this?" Sorry, but I just can't do that screaming all caps thing.

The fact is, after you replied on that other Valve Selection thread, you posted the contact info a few more times again on the same thread http://valvereplacement.com/forums/showthread.php?t=21739 and you did not answer my further question on that other thread. In fact you began another thread attacking me by name and it was later deleted. Remember? I think some of us wondered if you posted all that contact information at least three times on the same thread for a specific reason.

This was a originally a beautiful and poignant and beneficial thread regarding Arlyss and her husband and their experience. There are some valid issues and clarifictions that have been added. But I'm not sure they belong on this thread. Could the latter part be moved to a new thread about Pannus growth or Valve promotion or something?

I see your new post now, Karlynn. Your posting excellent personal experience with a beneficial [home testing INR] machine seems very different from this situation.

And actually, regarding a separate sticky, I had asked some time ago if each valve shouldn't have a sticky thread but that thread got shot all to pieces .

So Al, couldn't you put a signature line on your posts that would explain what valve you are planning on getting some day, and why, and add your contact info there? And you're welcome to add my signature quotes also .

Edit - I tried to send a PM to you, Al, but your PM box is still full.

 

[Ross]

To further clarify the position of the site and administrators, Valvereplacement.com do NOT endorse any valve or manufacterer. We remain a site dedicated to heart surgery and support.

 

[temp69]

bad mad?

bad mad?

Mmmm...what a moniker. I chose the on-x after research, and after conferring with the top surgeon in the country, Dr. Laks at UCLA, who's done more AVR's than just about anyone. A friend's a doc, she did her res at ucla and told me laks knows his stuff, he teaches others.

So...i'm sure tried and true is good. but the on-x shows such promise for not having to take coumadin at all it's worth it. and then, i find out comadin is no big deal at all. one finger prick a month. no sweat.

So, go with your gut. i think the on-x is working. i'm still here after a year.

t

 

[francie12]

Hi--I just wanted to mention that I am on and off here at this site due to a very busy schedule, and the zeal in Al's posts drew my attention to the On-X, giving me very valuable information about it. It's now definately on our short list of "fixes" for when the time comes to choose. Thanks again to everybody for weighing in on all these matters.

 

[Bad Mad]

"I also have seen and read reports (one from a Medical Journal, others from an Internet Discussion Forum for Surgeons) of Early Valve FAILURES (in the O.R. mostly, but some post-op) of another 'new' valve.

Again, I prefer NOT to alarm recipients who are doing just fine with that same valve. (Part of the problem seems to be proper sizing at the time of surgery. Patients who are doing fine obviously were sized correctly.)"

Now that Ross has confirmed your intentions re: ON-X to be completely sincere Al, we can move on, and I can attack you about something else

I am messing of course. But having said that, do you not think the statement above is going to spark curiosity and questions from people wanting to know exactly which valve it is you are talking about? So indirectly, you ARE going to alarm some people?!

Glad to hear the form is good Temp 69 . Hope you are still enjoying those weekends as much
BTW: What is a moniker??

 

[Mary]

BTW: What is a moniker??

In case Temp doesn't see your question for a bit, Bad Mad, here's your answer.
Moniker--A personal name or nickname
Basically he was referring to your username.

 

[Bad Mad]

Ha ha. Very good Temp
Thanks for that Mary. Must be an American saying!

 

[ALCapshaw2]

.

To be honest, as I have said repeatedly in other threads, I want to get the best, balanced picture possible before I make MY choice on whether to have an ON-X, St. Judes or whatever. This isn't scepticism as such, more sensible in my mind. Perhaps this independant study that I came across will be useful:
Excuse me if it's been posted before.

http://icvts.ctsnetjournals.org/cgi/content/full/4/6/588

I would think that we all share the goal you outlined above.

Thanks for sharing that link. I had not seen it before and am still 'digesting' it. We could use more contributions from other sources to help balance the never-ending 'Search for the Perfect Artificial Valve'.

'AL Capshaw'

 

[Susan BAV]

"Never ending valve debate"

"Never ending valve debate"

That's the whole problem. It is not a debate. It shouldn't be a debate. Why must some insist on making it a debate?
(Edit - Al, glad you changed your "never ending valve debate" wording)

What works for some may or may not work for others. There may be more than one correct choice for Valve Selection; or rather, most people can make any good choice work well. We make these choices based on our personal definition of "quality of life," and with the help of EXPERIENCED AND TRAINED PROFESSIONAL AND HIGHLY RECOMMENDED AND SUCCESSFUL SURGEONS who have MORE EXPERIENCE than anyone here!!!

I think my ALL CAP key got stuck ...