Message from the Founder

[Rain]

The past has made us a suspicious bunch.

The past has made us a suspicious bunch.

If we keep being so suspicious of everyone, and not letting anyone have an opinion that isn?t just like ours.... all you?ll hear around here are the same words (over and over) out of the same peoples mouths.


My money says... if Lisa shows up in Mesa, AZ she'll get a massage.

 

[Lisa in Katy]

I agree with Rain.

I also agree with Marty. I'm not willing to be a guinea pig. Think Silzone! Those people weren't even aware that they were getting something that hadn't really been proven!

Don't worry Hank, I'm not going to be in Mesa anytime soon! Gas is too expensive!

 

[Susan BAV]

Experience was very important to me also, in my search for an excellent surgeon.

But also, my simple approach was first to decide whether I thought mechanical or tissue was a better option for me. During my research, I came across the name of a specific brand and type of valve that seemed particularly promising.

We consulted with three highly recommended surgeons and selected our extraordinary surgeon and told him what I wanted and why and then asked him for his experienced opinion. He preferred a different brand and type of valve for me. He had seen good results with that valve from his experience; and my husband and I were both good with that.

Our sufficiently informed and cautious approach, including trust in the experience of our excellent surgeon, made sense to us and worked well for us. But we have never been people who pursued a "brand;" we just pursue quality. And there seem to be so many good valves available out there.

Anyway, to me, an experience similar to this I have described may have been what the member, Mr. Magoo, was referring to in his post, which aroused no suspicion in me -- in fact I have enjoyed the intelligent expressions and application of his experience in his posts.

 

[dtread]

Marty writes: “Dan, I am happy I allowed the surgeon to choose my valve. Ten years later at age 82 I'm still here! The St. Jude # 33MEC-10 is still clicking along. What's to complain ? I think if the On-X is really better all the surgeons would use it immediately. After all, they want the best outcomes.”

Marty, I am glad that you are doing great! I think you made a good choice. The On-X heart valve was not even an option in the U.S. in 1998 when you got your implant, the Internet was in its infancy, and VR.com did not exist.

You state that “if the On-X is really better all the surgeons would use it immediately. After all, they want the best outcomes”. I believe there are a number of reasons why this may not be the case, some of which I outlined in my previous post. It takes a long time for a new medical device to establish a name for itself and replace an existing device that has a good reputation and/or a contract to furnish medical supplies. I do not know whether donations or other influences may affect valve choice by a particular medical center. I am not even sure whether an individual surgeon even has much say regarding which valve to use or whether this is decided by the Chief of Cardiology, or by bid, or whatever.

I am sorry to say that my own Cardiologist was totally unfamiliar with the On-X. My surgeon was only vaguely familiar with the On-X, even though the On-X obtained premarket approval from FDA for use in the U.S. in 2001 and (in 2007 when I had my surgery) had been implanted in over 60,000 persons worldwide (the latest I heard it is now over 70,000). As I indicated previously there are a lot of reasons why replacing an encumbent heart valve takes time.

With the Internet the landscape for heart valve patients is quite different in 2008 than it was in 1998. I think I outlined my reasons for why I chose the On-X over St Jude in my previous post. In a nutshell it is because I believe it is the most technologically advanced and best heart valve on the market today. Since valve replacement is most certainly a life-altering event I wanted to make sure that I was comfortable with the choice that was being made. First I had to decide whether to get a biological versus mechanical valve. Once I decided to get a mechanical valve it was a matter of researching the mechanicals to determine which I felt was best. I chose On-X. Right or wrong, I made my choice, and I’ll live (or die) by it. So far I’m 16 months post-op and I’m still here and living quite well by it. Marty, I have no complaints either!

 

[skeptic49]

Dan,

Thanks for your posts - good reading indeed!

Jim

 

[Marty]

Dan, I think you will continue to do well. You found a good surgeon who validated your choice. Dr. Lefrak wrote one of the early books on different types of heart valves. He said that from the earliest days new valves have been promoted for a variety of reasons including crass commercialism. If the On-X is still around in ten years and doing well he may order a few for his private practise at Inova Fairfax. There are no cardiologists or administrators that tell our surgeons which valve to use! By the way, Im sure you know, the Washingto Hospital Center has been tops in heart surgery for a long time. You are like me you decided to stay close to home. My internists wanted me to go to Cleveland Clinic or Hopkins. I joke that I chose Fairfax becaus it was ten miles from my house with easy parking!

 

[dtread]

Marty, I was very impressed with Washington Hospital Center and would have no problem recommending them to anyone contemplating heart surgery in the DC area; either bypass surgery and/or valve replacement. They definitely know their stuff. They are about 5 miles from where I live. Believe it or not, to get there for surgery I walked to the train station, caught the train for just two stops, and then it was about a 10 minute bus ride to the hospital.

 

[Duff Man]

From what I can tell, it's a good valve with impressive data. When I talked about the On-x marketing, I wasn't trying to detract from the engineering or quality of the valve at all. I've been aware of the people surviving/thriving in africa that aren't ACT compliant, and I find that pretty amazing. To me, that's probably the most impressive fact about the on-x valve.

While we're talking about personal preference; If my surgeon gave me a choice of all the best mechanical valves I think I'd have a hell of a time choosing one, but the lack of an attached conduit on the On-x is somewhat a deal breaker for me. I'm sure people do just fine with the conduit manually sewn on, but it might be too many variables for me to be comfortable with. The lack of experience with the particular valve is also an added detractor. But alas, I hope I'm very far away from making a decision.

But all that is neither here nor there. I still think it's clever marketing. Good for them, seriously. I hope they get the word out. There needs to be more freedom of choice in the valve/medical industry. I can't stand how pissy a surgeon gets in a consult when you mention a valve they don't use. It's my freakin body, dude!

I bet I sound pretty ambivalent.

 

[Bonzo Dog]

From what I can tell, it's a good valve with impressive data. When I talked about the On-x marketing, I wasn't trying to detract from the engineering or quality of the valve at all. ........................

Duff, I think you've highlighted the main issues surrounding On-X there.
A body of opinion sees something improper in the placing of their survey on VR.com and lack of publicity for other manufacturers. Simultaneously many acknowledge On-X may well be a superior technical valve. However some of that superior product awareness is diminished in peoples minds by their marketing strategy.

 

[Mr. Magoo]

When I get some time I would like to post a more detailed response, but for the time being, I wanted to clarify one of my original points about commercial aspects on the site. I personally don't have a real problem with ads and logos and references, etc. from companies. Heck, if I was running a site I would probably go to the companies for educational grants to help defray some of the costs.

However, I simply thought it was very important to make people aware that by participating in the On-X survey, they were selling important personal information about themselves and their surgeons that the manufacturer would likely use to interject themselves into the patient-physician relationship with a selling campaign at a critical time. With that information in hand, readers can now make a more informed decision on whether they wish to participate or not. Is that not the objective of the forum?

I'll catch up later on some of the other points.

 

[Marty]

Captain of the ship?

Captain of the ship?

I guess I am just old-fashioned but I can't get used to the idea that a patient walks in to the heart surgeons office and tells him what kind of a valve he should use. I t may not be analogous but I am a radiologist and I'd be taken aback if a patient told me they wanted me to use a certain brand of contrast material or a specific brand of film.I still say the surgeon is captain of the ship and responsible for the assistants, valve, anesthesia, instruments, etc.,etc.

 

[Bina]

Mr. Magoo and Marty have made a couple of excellent points.
1) My personal information is also not "for sale".....
2) I chose my surgeon based on his reputation. HE then offered ME a choice of valves.

 

[Lisa in Katy]

I really think it's a difference in personalities. I too feel that I should pick the best surgeon and then let him do his job. That's not to say that I trust all physicians implicitly. I've been in healthcare long enough to know better. Others like to be completely in control, or at least feel that they are. However, Marty makes a good point. Very few people want amateurs to tell them how to do their jobs. Some people even get defensive about it.

An analogy - let's say you are the IT person for a company. The company has been using Microsoft for ages. It works great, you know how to deal with its quirks, you can install it on any machine, and fix what goes wrong with it. One day Dwayne - an end user - comes in and says "You know, I've been doing some research on the internet and I hear that this new program, Flippydoodle 1.2, is better than Microsoft. It runs twice as fast, never crashes, and promises to not be obsolete for at least 10 years. I want you to install it on my computer.

If you're calm, you'll probably say, "Well, Dwayne, I don't know anything about that program, and I don't feel competent to install it or maintain it without more training. If you'd like to wait 6 months or so, I'll do some research and let you know." What you'd probably be thinking is, "Not no, but Hell No! I'm the expert. I'll have to spend my nights, weekends and holidays fixing it, while Dwayne will just sit back and blame the problems on me! I'm going with what I know and like! It's good enough for everyone else, it's certainly good enough for Dwayne!"

I'm not saying that doctors shouldn't use new technology, but if you try to insist that they do things your way, they might not like it, and an irritated surgeon might not be your best choice. If you really have your heart set on a particular valve, it's probably best to find a surgeon who routinely uses that valve. Call the company. Ask who they work with in your area. Get references and if everything checks out, go for it!

 

[Bridgette]

At the end of the day it doesn't really matter which brand of valve you get - it is going to save your life whether it is St Jude's, On-x or whatever.

No one HAS to sign up to the patient survey - I doubt that all that many people will anyway. I don't think I would.

I think Hank said earlier in this thread that if other valve companies came with a similar proposal he would consider it just as he did the On-x proposal so I can't see any problem. Hank hasn't even got an On-x so he can't be accused of favouritism, lol

Anyway basically I can't see the big deal here....

Bridgette

PS: Yeah, I have an On-x but I didn't know that until AFTER my surgery. I asked my surgeon to show me a copy of the valve I had, and he showed me a demo model.
I just try and think positive - that it has the potential to be a really good valve and has possible improved performance dynamics. If I was gloomy and negative I might think oh gosh it's a relatively new product on the market compared to other valves, is it proven to be any good etc etc...

I chose the surgeon I wanted, and he picked the valve. That's the way my situation was - I'm happy with what I got and would be just as happy with St Judes.

 

[Mr. Magoo]

In post #59 of this thread, dtread describes in thorough detail the process he went through in determining that he wanted his surgeon to implant an On-X valve in him. He underwent a successful and presumably uncomplicated surgery and recovery and appears to be doing well. His path does not seem to be an uncommon or unreasonable approach and it addresses many factors and issues. I don?t have time to address them all right now and the response would be too lengthy. However, I can add some perspective through a few posts that I can make over the next few weeks. For now:

dtread writes: Mr. Magoo thinks that valve choice should be left to the surgeon. Pick a good surgeon, and then let the surgeon decide the valve. The implication is that the ?Valve Selection? forum should be changed to ?Surgeon Selection?. Pick a good surgeon, who has completed at least two dozen implants of whatever valve he/she decides to use, and you?ll do okay.

I am not implying or even suggesting at all that this forum should be ?Surgeon Selection? instead of ?Valve Selection?. Valve Selection is not just about brand selection. There are important issues such as mechanical vs tissue, repair vs replace, Ross vs homograft, etc. that are a part of this thread. They should involve patient consideration and I wouldn?t be so quick to simply leave those up to the surgeon. I think I also said somewhere that if you had your heart set on a particular valve, my experiences suggested to me that you would be reducing risk if you found a surgeon who had experience with that valve. Two dozen implants was not a number I selected arbitrarily. A surgeon who I would guess now has 1500-2000 valve cases under his belt, mentioned in conversation one time that it takes him ?a couple dozen cases to really get the feel for and understand all the implant nuances of a valve.?

dtread writes: I do not agree with this very conservative and quite passive position. If I did I would not have an On-X valve; I would have a St Jude.
When I became aware that I would be having a valve replacement, I only had a few weeks prior to the surgery to prepare.

In the first few weeks that I was involved with heart valves, I am pretty sure that I thought one was better than another. Honestly, I can?t remember back that far. However, after many years of involvement which has included looking over hundreds if not thousands of scientific papers reporting on valve performance, I just can?t find any good science that shows one brand of mechanical bileaflet valve will better serve patients than another. I am not convinced that the length of your life, it?s quality, your exercise tolerance, etc. would be any different had your surgeon implanted a St. Jude. In subsequent messages, I will explain how I came to that point of view.

dtread writes: I specifically performed my research being aware that the websites would be using marketing strategies to promote their product, and to try to ?read between the lines? so to speak.

That is a wise approach. Using websites and company marketing literature to make the decision somewhat reminds me of a loving mother standing hand in hand in front of a mirror with her 10 year old daughter who asks, ?Mommy, do you think I am pretty?? What do you think she is going to say? ?Oh Sweetheart, you so remind me of Uncle Fester from the Addam?s Family? or is it more likely to be, ?You are the most beautiful daughter in the world.? Maybe I can offer some assistance that will help people better read between the lines.

Thanks and have an enjoyable day.

 

[Ross]

?Oh Sweetheart, you so remind me of Uncle Fester from the Addam?s Family?

Talking about me again?