lower tissue-valve life with higher activity level

[tobagotwo]

(not intended to hijack the thread)

I agree that I don't feel a credibility gap, nor an intent to redirect others in what you post.

It seems to me that it's important for people to realize that you are not speaking for the company you work for when on the forum. It would be good for you to state so (assuming that is the case, which I do assume). Very few companies would allow any of their employees or consultants to do so anyway, as there are just too many risks run with the FDA to allow someone to reply on the fly without extensive review of what is said.

I also believe that there is some risk for you in revealing your affiliation publicly, as the company may consider it a risk for them regardless of whether you are intending to speak for them. I applaud your desire to help people in this predicament of life, and hope you will stick around and continue to do so. I wonder that it might be better to edit your post and simply refer to it as "a company that manufactures heart valves," rather than naming it outright.

I think that as long as Hank and Ross are pre-informed and aware of any affiliations that might affect objectivity, they can moderate anything that seems to step over a line with the individual. This might allow more individuals with direct experience to become involved, as they would not have to reveal their exact employment on the open web, which could get them into trouble with their employers.

Just some thoughts.

Best wishes,

 

[Superbob]

I appreciate your perspective about marketing, and I understand why it's not in order to post your company's name. Thanks for the outlook you are providing.

 

[Ross]

Ladies and Gentlemen, please, time out!

Scooby does not have to enter anything more then he already has in his signature or his profile. Hank and I both know about him and I've talked with him on a couple of occasions now. If he had presented ill will or advertising without consent, you all know he wouldn't be here right now.

This is not a private club. Hanks goal is to make this the #1 support site on the whole internet. Forcing people to add things to their signatures and profiles when it's not a wise thing for them to do to stay out of hot water with their employers, is not going to help Hanks vision any at all. We want these people to notice us and how we operate. The more of them that talk about us in a positive light, the more exposure this site will get and the more members it will get also.

Fact of the matter people is, this is a support site for valve replacement surgery and it's open to anyone so long as they abide by the rules. We have professionals from everywhere looking in and some have signed up and not participated, likely for the same reasons that Scooby is feeling heat right now. They don't want that and want to remain anonymous and that is fine with us as long as they are honest and straightforward with us to begin with.

I would ask that anyone you find suspicious or catch outright advertising, tell Hank and I about it and leave us take care of it from there. You've done your part. Leave it at that. There are soon going to be some changes here and the last thing we want to do is blow that when it happens.

We need to focus on helping others and not so much on proving who a member is or their motives are. If we keep moving in that direction, we will be the #1 site out here.

Thank you.

 

[kfay]

Here we go again...need I say more?

 

[Duff Man]

Ladies and Gentlemen, please, time out!

Scooby does not have to enter anything more then he already has in his signature or his profile. Hank and I both know about him and I've talked with him on a couple of occasions now. If he had presented ill will or advertising without consent, you all know he wouldn't be here right now.

This is not a private club. Hanks goal is to make this the #1 support site on the whole internet. Forcing people to add things to their signatures and profiles when it's not a wise thing for them to do to stay out of hot water with their employers, is not going to help Hanks vision any at all. We want these people to notice us and how we operate. The more of them that talk about us in a positive light, the more exposure this site will get and the more members it will get also.

Fact of the matter people is, this is a support site for valve replacement surgery and it's open to anyone so long as they abide by the rules. We have professionals from everywhere looking in and some have signed up and not participated, likely for the same reasons that Scooby is feeling heat right now. They don't want that and want to remain anonymous and that is fine with us as long as they are honest and straightforward with us to begin with.

I would ask that anyone you find suspicious or catch outright advertising, tell Hank and I about it and leave us take care of it from there. You've done your part. Leave it at that. There are soon going to be some changes here and the last thing we want to do is blow that when it happens.

We need to focus on helping others and not so much on proving who a member is or their motives are. If we keep moving in that direction, we will be the #1 site out here.

Thank you.

Amen brother. I'm a huge proponent of anonymity. For me to even use my first name on the internet is pretty wild. You expose yourself to a huge risk for exposing any information about yourself on the internet.

Buy hey, I was under the impression this is the number one site....? Like really, I don't know of another forum with so many active members discussing VR, not that I've been looking though.

 

[tobagotwo]

The key to survival in the young active age group is to avoid PPM at all costs (valve to small for metabolic needs.) This has been illustrated in many studies, most recently from Cleveland.

I'm assuming that this is Patient-Prosthesis Mismatch that we're talking about, rather than Parts-Per-Million of calcium in the bloodstream. Yet I see relatively little anymore about ripped and damaged valve leaflets, and more about early calcification.

I realize you are privy in your job to some otherwise quite-expensive-per-peek study documents, which also creates the publishing copyright issues you discussed earlier. I was wondering about the most recent studies you've viewed, in relation to the quote above.

In the cases referred to in the quote, l see that you are talking about a small, very select group of patients with an annulus size problem (PPM) that is more related to the surgeon's judgement or child's growth than the valve itself. However, within that specific group, is the early wear problem you're describing one of the valves actually wearing out structurally, or the valve tissue being overstressed by the annular opening size issue and inviting early apatite formation? Or possibly both?

Thank you,

 

[Hank]

Valve Manufacturers on ValveReplacement.com

Valve Manufacturers on ValveReplacement.com

Okey Dokey Folks..

Let me bring it all back to basics for y'all.

Any and all Valve Manufacturing Company representatives and/or employees and or mothers of aunts of employees are more than welcome on this site.

There is not now - nor has there ever been any requirement for any sort of disclosure ragarding ANYONE's official affiliations.

The Administrators of this site will be the ones who decide what is proper and what is not.

If at any time any member of this forum feels that any post is deemed questionable, then PLEASE report that post as such and we will check it out immediately.

We have had valve company representatives on this site all along. Some of them I am aware of, as they have contacted me privately to inform me. I am positive that there are many more here who only lurk and never post. There are most likely more still that post regularly and we have no idea of their affiliation.

Let me stress the fact that this is EXACTLY what I want for this site!

I want everyone to contribute whatever they possibly can so that this place becomes what it is meant to become. The World's Greatest Resource for Valve Replacement Surgery Information!

Any post or member that contributes to that goal is welcomed. Any post or member that does not contribute to that goal will be addressed as the Administrators see fit.

Scooby - Thank you for your participation here.

Oaktree - Please let the Administrators worry about what is proper and what is not. We are more than capable of handling the correctness of any post or user.

Please stay tuned as we will soon have a special feature introduced by one of the leading valve manufaturers that I have been speaking about

 

[Scooby06]

Ppm

Ppm

Tobagotwo-

Yes, I mean patient prosthesis mismatch, to clarify.

There was a recent paper from the Cleveland Clinic (Milhajevic 2008) where they looked (estimate about 4000, do not have the paper in front of me.) at a large group of their AVR patients. It was a paper about factors affecting survival in the cohort. One of the big take aways was that elderly people tolerate PPM fairly well, but young people do not. Their recomendation was that more technically demanding (and higher risk) surgery was not needed in the elderly to prevent mismatch.

The paper was not about valve failure per se, but we do know that PPM places valves under higher stress, which would likely lead to earlier failure. I have never seen a paper on valve failure and PPM. This is likely due to it being a relatively new concept in cardiac surgery, getting first publication 2000, but gaining more traction recently.



As always, I can e-mail the paper to anyone that would like it if you PM me.

Thanks-