Pannus Growth/On-x discussion

[ALCapshaw2]

"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?!

How to balance information to "protect the public" is a never-ending debate in our world today. Good arguments can be made for both sides of the issue.

The 'Discussion' in the Heart Surgery Forum (a Forum for Surgeons and NOT a part of VR.com) has been removed but copies are available from people who saved that debate on their computers. Catheran Burnett has a copy and so do I, among others. It can be e-mailed as an attachment. FWIW, a link to that discussion was posted on VR.com when it first started but I can no longer find it. A link to The Heart Surgery Forum can be found by using Google or other Search Engine.

The article (detailing a particular type of failure during Aortic Valve Surgery) can be found in The Journal of Thoracic and Cardiovascular Surgery for June 2005, page 1446. Again, either Catheran or I can send it as an attachment in an e-mail. I expect others also have copies of this information.

After inquiring, I have been asked NOT to post the text from these sources on VR.com and will continue to honor that request.

'AL Capshaw'

 

[Lynlw]

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

This was interesting
In summary, there are no clinically relevant differences among the most commonly used bileaflet aortic valves [15]. The data have given similar results with two recently published trials. However, with the unique features, the On-X valve performs satisfactorily in the first 4 years following AVR, MVR and DVR. Longer term follow-up studies are needed to determine prosthetic durability for On-X valve design.

 

[Karlynn]

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 ...

I would agree, it really shouldn't be a debate, but a sharing of the aspects of each valve option from repair to replacement.

However, we've found, more often than I am comfortable with, that some of the "experienced and trained professionals and successful surgeons" do carry their own biases and we can see some information offered to their patients is "less than accurate" based on these biases.

The biggest for mechanical valves is, obviously, the warfarin issue. We've seen here that even some highly respected physician don't have up-to-date knowledge of warfarin management and what life is like on warfarin. For a doctor to tell someone that because they are a hobby cyclist they should avoid Coumadin is a statement based on bias from adhering to incorrect information. The whole "If you lead an active life, you should avoid Coumadin." is still a major misconception that some in the medical field still hang on to, and we still see that often here. At this point, I don't think it's a debate to raise the issue that those statements are wrong. Didn't we just have someone just report that their cardiologist and surgeon both told him that the risk of an incident on warfarin IS cumulative, going up with each year they have the valve? That's a pretty egregious error, in my opinion, that would definitely (and has) affected the choice a person makes. To correct that is not a debate - it's stating the truth and giving our members correct information.

I think if those of you that have tissue valves were to be honest, you too would have problems with someone reporting that their cardiologist told them that since they are 32, they have to go with a mechanical. It's not true, it's the doctor's opinion. Many highly respected doctors have this opinion, but it's not a hard, cold fact based on exact science.

If someone posts that their doctor doesn't want to go with the On-X because it hasn't been proven yet, it's okay for someone here to post information to the contrary.

If our members choose to debate whether some of these things are correct - then that's not necessarily a bad thing if it's kept civil.

Perhaps if the debate becomes lengthy, it should be renamed and moved (as done here) so as not to detract from the original post if it's taken a fork in the road.

 

[Susan BAV]

Let's be constructive here...

Let's be constructive here...

I would agree, it really shouldn't be a debate, but a sharing of the aspects of each valve option from repair to replacement...I think if those of you that have tissue valves were to be honest...

Out of context? Maybe. Maybe not. Constructive? Definitely not.

I don't challenge your truthfulness; please don't challenge mine. I don't group all of those with mechanical valves in the same bunch, or insinuate they are untruthful; please don't group all of those with tissue valves in the same bunch either, insinuating similar nonsense.
(Edit - see simultaneous thread in Pre-surgery for more details...oh, it's been deleted now ...)

Some with mechanical valves have switched to tissue valves after they've had complications. Some with tissue valves have switched to mechanical valves after they've had complications. I think they're all glad to be alive.
I know that I am. And I'm glad you are too.

Do you like apples or oranges better?

Let's debate about that. It makes about as much sense.

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?

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 ...

 

[Karlynn]

Out of context? Maybe. Maybe not. Constructive? Definitely not.

I don't challenge your truthfulness; please don't challenge mine. I don't group all of those with mechanical valves in the same bunch, or insinuate they are untruthful; please don't group all of those with tissue valves in the same bunch either, insinuating similar nonsense.

I was not commenting on anything having to do with you personally. Please stop trying to look for underlying meanings in anything I or anyone else posts. I do not attack members here or accuse them of anything ulterior. Please do not do so with me.

Perhaps you would have used a different term, but what I was trying to say in a way that had no accusatory voice behind it what-so-ever, was that we all see things here having to do with our own valve choices that we know to be wrong and would point that out when we find them. If I had said "look within yourself" instead of "honest" I would have been accused of saying you don't ever "look within yourself". I was not speaking to you. I apologize is the fact that I used your post made you assume the post was for you.

You may not like a debate - but it appears you do like a good dust up because you are finding fault where no ill-intention exists. But you are free to believe what you like.

 

[Susan BAV]

I was not commenting on anything having to do with you personally. Please stop trying to look for underlying meanings in anything I or anyone else posts. I do not attack members here or accuse them of anything ulterior. Please do not do so with me.

Perhaps you would have used a different term, but what I was trying to say in a way that had no accusatory voice behind it what-so-ever, was that we all see things here having to do with our own valve choices that we know to be wrong and would point that out when we find them. If I had said "look within yourself" instead of "honest" I would have been accused of saying you don't ever "look within yourself". I was not speaking to you. I apologize is the fact that I used your post made you assume the post was for you.

You may not like a debate - but it appears you do like a good dust up because you are finding fault where no ill-intention exists. But you are free to believe what you like.

Oh. Thanks for the clarification; I did think that since you used my post, then your post was intended for me. I'm sure glad no ill-intention exists in this case and perhaps I over-reacted because of some of the other postings on recent threads. Regarding underlying meanings and ulterior motives, perhaps we all at least occasionally struggle with that to some degree, either consciously or sub-consciously.

I'm sorry if my post came off as enjoying fault-finding. I know some here seem to pitch fits about common medical terminology, like some references to anticoagulants, and I sure don't want to be seen as being unreasonable. In my mind, I'm just preferring that the information and experiences presented on this site are accurate and balanced and supportive. I really don't like confrontation but sometimes I read something here that is just plain wrong and I can't always let it go by. I like to think that my posts don't bully peoples' valve decisions though. I just don't like to see other posts that appear to do so.

And I still think that nearly anyone can make the best of nearly any good valve choice; and there may be more than one correct choice for many of us. That's just my opinion. My tissue valve won't last forever. I may need to look for another valve in the future. I may choose tissue again. Or the On-X. Or another mechanical. Any of those might work or they might not; there are always possible complications. It's good that many here can make a personal quality of life call on a valve choice like that. For those who get what they got, they make the best of that too. And that's quality of life too, to make the best of what you have.

 

[greg]

OK, I should of sat on the side lines and just read the thread. I'm just not very smart sometimes.

Al,
I also am tired of your repeated sales promotions. Yes the product might be wonderful. Just say it and move on.
I'm also very tired of your keyboard problem. The excessive use of caps really annoys me. It can only be considered as screaming. Please control it.

Ross,
I accept your and Al's word that Al is not an employee of On-X. However, with that said, I feel that at the least Al must be having an affair with the Burnett lady. Why else would she be advertised over and over and over and over and over? It seems to be more than just a fervent belief in a product. I have received valuable information about home testing without the same repeated sales pitches. The same is true for doctors, hospitals and all the other things discussed here.

Good things presented poorly soon become poor things. Don't let that happen with a good thing.

Greg

 

[Ross]

OK, I should of sat on the side lines and just read the thread. I'm just not very smart sometimes.

Al,
I also am tired of your repeated sales promotions. Yes the product might be wonderful. Just say it and move on.
I'm also very tired of your keyboard problem. The excessive use of caps really annoys me. It can only be considered as screaming. Please control it.

Ross,
I accept your and Al's word that Al is not an employee of On-X. However, with that said, I feel that at the least Al must be having an affair with the Burnett lady. Why else would she be advertised over and over and over and over and over? It seems to be more than just a fervent belief in a product. I have received valuable information about home testing without the same repeated sales pitches. The same is true for doctors, hospitals and all the other things discussed here.

Good things presented poorly soon become poor things. Don't let that happen with a good thing.

Greg

Greg we are working on an alternative remedy. Please hang in there.

 

[ALCapshaw2]

OK, I should of sat on the side lines and just read the thread. I'm just not very smart sometimes.

Al,
I also am tired of your repeated sales promotions. Yes the product might be wonderful. Just say it and move on.
I'm also very tired of your keyboard problem. The excessive use of caps really annoys me. It can only be considered as screaming. Please control it.

Ross,
I accept your and Al's word that Al is not an employee of On-X. However, with that said, I feel that at the least Al must be having an affair with the Burnett lady. Why else would she be advertised over and over and over and over and over? It seems to be more than just a fervent belief in a product. I have received valuable information about home testing without the same repeated sales pitches. The same is true for doctors, hospitals and all the other things discussed here.

Good things presented poorly soon become poor things. Don't let that happen with a good thing.

Greg

Greg,

Are you familiar with the Legal Term: LIBEL ?

Suggesting that I am "having an affair with the Burnett Lady" would seem to fall under that classification.

As for my use of CAPS, that is the ONLY way I have of emphasizing words. The Icon, BOLD, 'italics', and _underline_ functions do NOT function for me on my computer and AOL connection to VR.com.

As for the repeated referals to Catheran Burnett of On-X, I supply that information to newcomers who ASK about valves. I have a *considerable* amount of information that I received from On-X after contacting them. I have NO intention of sitting here and transcribing all of that information, hence the referal and suggestion that the writer get his own information package FREE of charge from On-X and draw his/her own conclusions.

I have also supplied the websites for the major suppliers in the U.S. market (which I learned from the material received from On-X).

Or should we just tell newcomers to "go look it up for yourself"?

'AL Capshaw'

 

[PeggyM]

Saying someone must be having an affair is a bit of a reach, don't ya think. Geez! Unless it's about me and George Clooney.

I know I'm new here but I have to jump in and say that without the info made available by Al I would not have known about the valve nor known to talk about it with my surgeon. In fact it didn't occur to me that I would even have a choice. I am very appreciative so thanks Al.

Now if you'll excuse me I'm going to finish my affair with my apple pie!

 

[greg]

Al,
GET A GRIP.....
Caps intended to emphasize.

Ross,
A remedy to what?
Hopefull not just another way to yell.

Peggy,
'A bit of a reach' is an understatement. It was said to make a point about the "over and over and over", etc.. Maybe the wrong way to go about it, maybe not.

greg

 

[Randy & Robyn]

Let me first say that I'm a firm believer in the On-X valve and its potential advantages. I also know Catheran Burnett. She was present at my surgery and is one of the most caring and knowledgable people I know.

I joined this forum when the On-X had a very limited following here. Only a few members had it implanted. I am very thankful that I had the time and the ability to research it for myself and come to my own conclusions. However, I would have welcomed someone like Al who is only trying to offer help to those who are new here and who are going through a very frustrating and scary time in their life.

I say kudos to Al.

I don't have the time, inclination or patience to deal with those on this site who look for every opportunity to jump down someone's throat when they are only providing their opinions and directing people to research data.

Al never stated unequivocally that the On-X is superior to all other valves. He simply gave his opinion and cited documentation that people could use to make their own decisions. Where is the harm in that?

There are many new members who never read any further than the threads that they themselves start. Words of encouragement are always abundant in these threads, reiterated for each new member as they should be. Why not pertinent information to help them make one of the most critical decisions in their life?

I for one think there are a few people on this site who need to grow up.

 

[Bridgette]

Ditto to the above.
Good on you Al for taking the time to post in threads and provide info and links to On-x.
I hope you will continue to do so for new members, and do not be discouraged by some of the very strange comments directed at you in this thread.

Bridgette

 

[Rain]

What can or can not be spoken in vr.com...

What can or can not be spoken in vr.com...

.
.
I’ve grown to know and love ‘Al Capshaw’. He certainly has an opinion when it comes to valves.... but that’s okay. Especially since it isn’t a tissue valve!

Al posting about his valve all the time doesn’t bother me NEARLY as much as the ‘Warfarin Patrol’ brow beating people when they say something negative about warfarin.

Greg, I may be the only person here who understands your lingo!! Al doesn’t know that if we prosecuted everyone who uses that line around here (4 corners area) .... we’d all be in jail!!!


Careful there, Greg.... I could throw a rock and hit your house from here!!

 

[Bridgette]

Hey Rain, looks like you have found a soulmate in Greg....looks like you two are "cut from the same cloth".

What IS the "Warfarin Patrol" by the way? You never gave me an answer last time.

Have a great weekend - don't you let the Warfarin Patrol bother you girl

Bridgette

 

[greg]

Rain,
I used to shoot trap over your way.
Very pretty country. Nice people.

Take care.

The view ain't bad from the sidelines. I just gotta remember that.

greg

 

[Rain]

It is beautiful around here for sure...

It is beautiful around here for sure...

BUT... rocks can be pretty too. You have the Grand Canyon and the CO river in your backyard and a lake to die for.

My sister & her family lived in Page.. for about ten years. The late 80s into the 90s. If you lived there back then you probably knew them. Really great people.

I agree... ?The view ain?t bad from the sidelines?. I try to stay there... but then there?s always someone like Bridgette....

Bridgette, that fabric was of a premium for sure.... to bad there wasn?t enough to go around.

 

[Bad Mad]

Just as the debate on the ON-X has gone quiet again, I thought it may be time to spark up some new debate

I met with my cardiologist on Monday, who clearly stated to me that this would be something to discuss with my surgeon when I meet with him shortly.
He did however point to the 11 year history of the valve as being the reason why he wouldn't be convinced. When I spoke of the lower levels of Pannus growth and thrombosis, he merely said that these things are not that big of an issue in the St.Judes anyway. So that made me think. apart from the possibilty of no anti-coagualtion, is the ON-X really not that much better of a choice? Is 0.5 % or whatever the percentage of lower levels of thrombosis/pannus growth really that significant?
Check out the reply I got from this guy in NY:




not suprisingly companies all tout their own valves with "data".
we do not generally use this valve but that does not mean that it's a problem.

in our experience mechanical failure rates for aortic valve replacements or even pannus ingrowth with the St.
Jude's valve we standardly use are not really the issue, and we don't generally worry about other valve types
except in unusual cases or when we are trying various types of tissue valves to avoid antiocaogulation.

Craig Basson

_________________________________________________
Craig T. Basson, MD, PhD, FAHA, FACC
Professor of Medicine
Director, Cardiovascular Research
Greenberg Division of Cardiology, Department of Medicine
Weill Medical College of Cornell University
The New York Presbyterian Hospital

 

[catwoman]

Bad Mad:

When my husband & I met with 2 surgeons about his MR repair, we discussed Plan B (replacement). One surgeon had not used the On-X, but was willing to implant one and was intrigued by the hemodynamics claim; he implants St. Jude valves
I don't believe the other surgeon had implanted an On-X either, but was not sold on it and said that pannus was a minuscule risk (my words, not his). He uses Carbomedics and St. Jude valves.

However, each surgeon said he would implant an On-X if my husband's valve couldn't be repaired and if he insisted on it.

 

[pamela]

After doing considerable research almost 8 years ago for myself, I came to the conclusion that if I could walk out of OHS with minimal drug prescriptions then I would be a very happy woman.

I only take a single ASA tab/day right now for both the anticoagulant and antiinflammatory properties of the drug. I am a happy woman. I walked away from 2 OHSs with this result.

I have had a blood clot this year (related to an orthopedic accident and not my heart) and finally finished with Warfarin in July. My menustration has finally settled down to something of manageable duration and intensity. The reason I've mentioned this on this thread is because, any replacement valve, that rescues the recipient from the neccessity of daily anticoagulant therapy is something that, seriously, needs to be considered as an alternative, especially if you're a woman of childbearing age.

There are other benefits to being able to live without medications too numerous to list: so I will simply end with the thought that it pays to have an open and frank interview with your surgeon, in order to shop for the best product for you.