I need to make a choice soon

[Lisa in Katy]

dtread - I have been pretty clear that new technology scares ME when we are dealing with MY life. If it doesn't scare you, great, go for it! Please don't let me stop you! I think the On-X is probably as good as the St. Jude and others; I'm just not sure that it is better. I've read the studies and can't find one that says so. I related the Silzone story just to say that it sometimes takes a while for something "new" on the market to prove to be bad. Think silicone breast implants, Vioxx, Thalidomide, Fen Phen.... The On-X has been around since 1996 and received FDA approval for use in the US in 2001/2002, so it has probably been around long enough to identify any major issues.

What I meant by being a guinea pig is that many doctors don't have experience implanting that particular valve, and as others have said, it is different to implant than some of the valves that have been around for awhile. As someone else has said (perhaps Mr. Magoo), if you want a particular valve, my recommendation is to find a surgeon who has experience with that valve.

Most hospitals buy the valve that the surgeons ask for. Since they get repaid for their cost (and more), there is no reason not to. The exception would probably be government run hospitals, but even they are going to bend over backward to make the doctors happy. The hospital I had my surgery in had at least 3 different types of mechanical valves in stock at all times.

 

[Eva]

I get a chuckle out of some of the posters on this website, .......
However, when it comes to surgeons, they feel like they are gods ......, and the surgeon may not even make the decision regarding which brand of valve will be used. The decision was probably determined by whatever contract the medical center has.

Valve replacement is a life-altering event. Lance Armstrong never would have won the Tour de France seven times if he had accepted his original recommendation for treatment for testicular cancer. .........
“the surgeon is the ‘Captain of the ship’, so to speak”. It is true that the surgeon holds your life in his/her hands for a few hours. However, YOU, the valve recipient, are the ‘Ship Owner’, and YOU are the one that will have to live with the outcome, not the surgeon.

All of us here have the right to post our opinions, but wish that readers do not "chuckle out ".... Please do not be offended by me quoting your words. I love everyone on this website as I look at us as one family on the same boat; and even though we are all strangers, yet we understand each other more than some family members or friends! Each one of us is going through very tough times facing upcoming surgery, or is recovering, or has had tough times and is trying to be helpful to others. Thus, We need all the kindness around us and to be kind to all around us. I am saying this to all of us as I feel some discussions have been heated up lately. Is it the change of the season or what

I apologize that I disagree with your comparison between testicular cancer and valve replacement--research in some fields are more advanced than in others--I agree that one should do research and try new things but not to use the comparison above as a guide to make a valve choice.

You refer to the surgeon as the Captain of the ship, and we are the owners of the ship! Well, can the OWNER of the ship sail his ship without the Captain's guide?!! I believe a good reputable surgeon always has the best interest of his patient in his heart, if he cares for his reputation and the OATH he took so that the owner can sail smoothly on his own later.

When the surgeon leaves the valve selection option to the patient, to me, proves there are no contracts between the center and the valve manufacturers. In my case, when I called the surgeon's office the 2nd time a few days before my surgery that I rechanged my valve selection, I was asked not to apologize as many patients change their minds on the same morning of the surgery...they are always ready for these surprises and have all valves.

I hope we do stick only to facts based on facts, and as was mentioned before, this is supposedly to be an informative supportive web-site.

 

[Eva]

Lets keep it civil and in line. It's a great discussion regardless of participant backgrounds.

Ross,

Welcome back! We missed you and missed your professional nice civilized responses
Sorry I did not welcome you back earlier! Things change so quickly around here. I started drafting my above post before yours and Lisa's--I got interrupted, and voila after I submitted it, I find yours and Lisa's! I am confused how this happened!

What is important is: WELCOME BACK

 

[Hank]

Take it easy...

Take it easy...

Yes - Lets please take it easy in this post..

The last thing we need is for Ross to get his blood pressure all cranked up and have him pop a stitch or something

 

[RobNDenver]

Geckley,

IMHO there is a reason why your Dr. suggested one valve over another. When I recently had my AVR, the Doc suggested a St. Jude. When I asked him why, he replied that it is the most used, and most durable valve that he had ever seen. He also pointed out that it ought to last me 35+ years, and at 56 I thought that was a pretty good argument.

I learned that he is intimately familiar with other valves including tissue valves from pigs and cows, but after I reviewed the literature, combed through this website and talked to my cardiologist I decided to follow his recommendation.

When I decided that this was the guy I wanted to cut me open like a canoe, stop my heart, replace the moving parts and restart it: I figured that if he recommended a valve I wasn't going to second guess him.

I hope that you don't think that I am trying to be flip or am minimizing the import of your decision, but I couldn't come up with a reason to overrule my heart surgeon's recommendation comparing my knoweledge base to his.

Good luck and Godspeed!

 

[tobagotwo]

I have a tissue valve and no loyalty reasons to choose one over the other. I have more than passing interest because of my friends on the site who have mechanical valves, and because I may someday need one myself.

These valves are all overtested to determine a failure rate, and virtually all of the mechanical valves are fit to last well over a lifetime (or two), assuming the host doesn't grow over parts of them or lose their attachment to them and leak perivalvularly (this can happen with tissue disorders). I have not seen anything about one of these valves (with the exception of the Silzone disaster - which was entirely related to the coated sewing cuff) that would indicate that there is actually a version that works more successfully than the others.

To what I've read, the St. Jude, ATS, On-X, Sorin/Carbomedics, are all best-of-the-best. You can't really go far wrong with any of them.

However, I am a believer in taking whatever edge you can in these circumstances. The individualities that strike me with the On-X are the flow characteristics that reduce the likelihood of clotting and overgrowth, the supraannular placement that allows a larger opening size, the soft-closing engineering intended to reduce hammering on the sutures and damage to platelets, and the newer pyrolytic carbon material, developed by the same person who developed the older materials still used in the St. Jude and the ATS valves. That newer version of the frame material doesn't retain surface silicon, which is part of what creates the requirement for higher anticoagulation rates on the older material, due to its drag coefficient.

I percieve those as advantages. The marketing end of MCRI itself I don't find so thrilling. I find their comparisons with tissue valves to be based on decrepit data that have been surpassed for many years, and misleading to say the least. But that's not the part that goes into your chest.

Best wishes,

 

[dtread]

I have HMO, did not have a lot of time to prepare for surgery, and did not have many other options for where I would go for surgery. I was offered St. Jude valve only; no other valves were offered. The model of St. Jude that was going to be implanted was not specified. My cardiologist was totally unfamiliar with On-X. My surgeon was only vaguely familiar with On-X. Not sure, but St. Jude may be the only mechanical offered where I had my surgery. Unless by special request as in my case.

Guinea pig definition, from Wikipedia: Guinea pig is also used as a metaphor in English for a subject of experimentation; this usage became common in the first half of the 20th century. Biological experimentation on guinea pigs has been carried out since the 17th century; the animals were frequently used as a model organism in the 19th and 20th centuries, but have since been largely replaced by other rodents such as mice and rats. They are still used in research, primarily as models for human medical conditions such as juvenile diabetes, tuberculosis, scurvy, and pregnancy complications.

I still find the comparison of anyone who has a valve type implanted for the first time by a surgeon to a guinea pig as incorrect, as I do not view that as an ?experiment?, or ?research?. The fact is that the risk to the patient of implanting a new valve type by a surgeon is relatively minor. The only risk is that it might take the surgeon a little longer to sew the valve in (perhaps a couple of minutes). I don?t view that as a big deal when you have to live with the outcome for the rest of your life. And the risk of paravalvular leak. If the surgeon has done their job right the risk for the implantation procedure for a new valve type should not be any greater than with any other valve.

I will avoid any chuckles from here on out. I was not aware that chuckling was not allowed. I did not see that in the forum rules. I may find certain things ironic though. Hopefully that is allowed. I did not see a prohibition against finding things ironic in the forum rules. Maybe it is in the unstated rules.

The Lance Armstrong book was simply an example of someone who did not simply accept the recommended course of treatment, and yes, I agree that cancer treatment is not that related to valve replacement. But there are some similarities.

The big problem with heart valves is that you cannot ?try one out? like you would take a car for a test drive. You get it implanted, and you?re stuck with it, perhaps for the rest of your life. You can?t just get your valve explanted and try out another one. There are a very few individuals that have had reoperations and have had different valve types. That select group of individuals has some very valuable information.

 

[Ross]

Please, lets not nit pick on silly terms. Is it really worth starting a flame war over? I don't think so. We've got to allow others opinions to be viewed and shared even if you don't agree with them, but lets not go down the war path over this. It's a simple topic for simple discussion. I'm naming no one in particular and everyone in general. Just want to be clear about it.

 

[geckley]

Wow Can't we all just get along. I just wanted and opinion not a sales pitch from either one. You are right this is probably the biggest choice of my life. I have made my choice and am going with the St. Jude. Not because my surgeon is a "Cowboy" His name is Duke though. But because he has said that St. Jude has been out for 30 years. On-x is fairly new. I have heard alot of controversy from the On-x camp but nothing from the St. Jude group. Other than the fact that they are still ALIVE. I can't walk up a flight of steps or bend over to pick up my 3 week old baby boy with out having to catch my breath and sit down. Soooooo a life of ACT treatment doesn't sound like that big a deal especially if I can home monitor. I'm 38 and want to see grand kids so pardon me if I wanted to make an educated choice. This argument is worse than religon or politics so maybe we can delete this whole thread and forget what I asked. By the way the Chevrolet 350 engine has been out for over 50 years and it still is one of the best engines ever built. The new Ford V8 Engine is a bag of crap so newest doesn't mean crap. This is where Ross goes nuts cos now I have started the whats better Ford or GM battle Royale. Thats cool because I own a Toyota. BTW I just saved a ton of money by switching to GEICO

 

[geckley]

PS

ROSS for President 2008

He's my Write In vote.

 

[Lisa in Katy]

Geckley - You have made a wise choice. I would have said that no matter which valve you had chosen!

 

[Mr. Magoo]

Perry noted: My INR target with my On-x is 2 to 3. I was told that with the SJM valve it would 2.5 to 3.5. That played into my decision and I doubt that the On-x folks picked a lower INR for marketing reasons. If you have evidence to the contrary - please have your lawyer contact me.

INR targets are not nor can they be set by the manufacturers. It is a medical decision that is dependent in part on the patient?s medical condition and can only properly be made by a medical professional. INR recommendations are published in a document entitled ACC/AHA Guidelines for the Management of Patients With Valvular Heart Disease. Perhaps it has been posted here before. This is a practice guideline that is fastidiously prepared by an American College of Cardiology/American Heart Association task force. There are nearly 30 members on the task force and it would be an understatement to say they are experts in the field. They review the published literature and experience to come up with recommendations on how to treat patients with valvular heart disease.

I have included the link to the entire document, although I will warn you in advance, it is very long (over 150 pages). This document is probably the most important and comprehensive published document with regards to treating heart valve disease. In Section 9.2.1 they discuss antithrombotic therapy for mechanical heart valves. Whenever there is a question about INR management, the proper answer is, ?The ACC/AHA Task Force 2006 Guidelines recommends......?

1 After AVR with bileaflet mechanical or Medtronic Hall prostheses, in patients with no risk factors,* warfarin is indicated to achieve an INR of 2.0 to 3.0. If the patient has risk factors, warfarin is indicated to achieve an INR of 2.5 to 3.5. (Level of Evidence: B)
3 After MV replacement with any mechanical valve, warfarin is indicated to achieve an INR of 2.5 to 3.5. (Level of Evidence: C)

For what seems like about the last 10 years, all manufacturers have commonly promoted Task Force recommendations that all bileaflet aortic valves without additional risk factors regardless of brand should be targeted at an INR of 2.0 -3.0. I won?t dispute what you are saying, but it would surprise me greatly if an institution such as Johns Hopkins which has a lengthy experience with SJM among others would be running any of their aortics at 2.5-3.5 unless their were other patient risk factors. I know of at least one SJM paper off the top of my head reviewing their 25 year experience and they indicated they often targeted low risk aortics at 1.8 -2.7.

http://content.onlinejacc.org/cgi/content/full/48/3/e1

Perry I am an Engineer and I work in the nuclear industry where technology, methods and materials are always improving. As long as the 'holy grail' of a life long valve with no anti-coagulation is a target, the technology that goes into heart valves will evolve. The SJM valve has a decade or two on any new valve - a tough comparison for a new valve. But I don't think that mechanical valve technology stopped evolving a decade or two ago.

In an era of rapid technological advancement, this is a reasonable assumption. However, based on the data that is out there, SJM pretty much got it right 30 years ago in my opinion. Tweaking pyrolytic carbon valves is not likely to get us to a lifelong non-anticoagulated valve. All one has to do is look at the flow of research dollars away from mechanical prostheses towards tissue technologies and less invasive implant techniques to realize the manufacturers understand the limitations of pyrolytic carbon valves. Great durability, but a need to be anticoagulated.

 

[Bridgette]

Sorry, but this is just getting a bit tedious now

But apparently some people are still enjoying this discussion...

Good luck with your surgery Geckley.

Bridgette

 

[Duff Man]

Easy, Geckley... I just bought hundreds of shares in Ford stock. No really, I did.

In regards to the valve choice, you can't go wrong with St. Jude, my friend. I think you're going to be just fine. I think your analogies ring pretty true.

I personally think all of the valve choices suck.

Also, why shut the thread down? This is genuine, open, candid discussion that could quite possibly help someone else decide which valve they want. I know I'm formulating opinions for my future AVR based somewhat on this thread.

 

[geebee]

I personally think all of the valve choices suck.

What really sucks is the fact that any of us are in this situation at all. It's not really fair (yeah, I know, who ever said life was fair?) but we all do the best we can. I think it is great that there are choices available.

Back in 1980, I ended up with a valve (Bjork-Shiley CC) that got recalled; I ended up having it explanted. Many people still have them and are doing fine (a few members here as a matter of fact). The BJCC valve was was fairly new at the time I received it and was considered the greatest valve on the market at the time and . My surgeon made the valve choice and I woke up ticking after going in assured that my valve would be repaired.

That valve was replaced with a tried and true St. Jude and I am doing great 14 years later. And, no, I am not saying any newer valve is like a BJCC valve. I am only saying we really never know for sure and can only look at what is in front of us and make the best decision given the information.

Geckley - I wish you all the best. The important thing to remember is the only bad choice is no choice.

 

[ALCapshaw2]

dtread - I have been pretty clear that new technology scares ME when we are dealing with MY life. If it doesn't scare you, great, go for it! Please don't let me stop you! I think the On-X is probably as good as the St. Jude and others; I'm just not sure that it is better. I've read the studies and can't find one that says so. I related the Silzone story just to say that it sometimes takes a while for something "new" on the market to prove to be bad. Think silicone breast implants, Vioxx, Thalidomide, Fen Phen.... The On-X has been around since 1996 and received FDA approval for use in the US in 2001/2002, so it has probably been around long enough to identify any major issues.

What I meant by being a guinea pig is that many doctors don't have experience implanting that particular valve, and as others have said, it is different to implant than some of the valves that have been around for awhile. As someone else has said (perhaps Mr. Magoo), if you want a particular valve, my recommendation is to find a surgeon who has experience with that valve.

Most hospitals buy the valve that the surgeons ask for. Since they get repaid for their cost (and more), there is no reason not to. The exception would probably be government run hospitals, but even they are going to bend over backward to make the doctors happy. The hospital I had my surgery in had at least 3 different types of mechanical valves in stock at all times.

I wish I could split Quotes into separate sections in order to keep the Quote and Response together, but either my Windows 98 based computer or AOL will not allow me to do this (or I haven't been able to make it work).

Lisa - It is your absolute Right to Choose or NOT Choose any valve for any reason, including not feeling comfortable with New Technology.

By your previous statement that you wanted a "100 year" valve, even your (30 year) St. Jude Valve does not qualify. The only 100 year implantable valves I can think of are Human and Porcine.

Everyone seems to want the BEST Technology with a LONG HISTORY of Success. Those are Mutually Exclusive Requirements. You CANNOT have BOTH. It comes down to a choice between Risks and Benefits.

There seem to be a lot of MYTHS and MISCONCEPTIONS about the Knowledge of Valve Choices and their Availability from Surgeons and Hospitals.

MANY Cardiologists and even Surgeons know Little or Nothing about the 'relatively new' (1996) On-X Valves. My own Cardiologist knows that my first choice for a future Valve Replacement is On-X, yet when asked, he told me he has NOT reviewed the valve.

My Local Surgeon offered only the Standard St. Jude Mechanical Valve and the Bovine Pericardial Tissue Valve. 'Take it or leave it'.

A well known Surgeon at a Major Center told me he knows about ALL the Valve options. He ONLY offers St. Jude.

MANY members have reported that their Doctors (Cardio's and Surgeons) reply that On-X is "Too New and Untried". I guess that means that 12 years and 70,000 implants isn't enough experience for them (or they haven't kept up with developments in the field).

If no-one ever took the 'risk' of New Technology, then there would be NO history of success and we would still be in the Stone Age. I'm not saying that YOU (anyone) must take this risk, but Someone must take that 'Leap of Faith' in order for Technology to develop.

A couple of members have reported that their Hospitals carried several Valves and were NOT a factor in the options offered to patients. I suggest that is NOT always the case.

I have been told by a Valve Rep that Cleveland Clinic and Mayo Clinic put their Mechanical Valves up for "Competitive Bid" and select TWO as their general options. Some surgeons at CC and Mayo have Refused to implant a valve that was NOT one of their 'preferred' offerings.

One member asked her surgeon why St. Jude was the primary offering. His response was reported to be "They have the Lowest Bid". (I'll see if I can find that post for anyone who has doubts.)

How many of you are driving 30 Year Old Automobiles?

'AL Capshaw' (St. Jude Master's Series AVR recipient)

 

[ALCapshaw2]

PS

ROSS for President 2008

He's my Write In vote.

Where is ROSS (Perot) when we Need Him?

Remember all those Charts that explained how things work?

 

[ALCapshaw2]

Wtatc, You will find that the people on the site are a very good source of information and support. This is just one of the topics that has a tendency to really get people's dander up. I don't even have a dog in this fight, I have a tissue valve and will never have the choice to have something different. However, even I have to agree it is ridiculous how frequently the On-x valve gets promoted and the phone number gets given out. I have never once seen that for another valve on this site.

It is fine to ask for people's opinions here, but remember in the end we are all strangers. Educate yourself and choose for yourself.

Kim

Kim, I Agree Completely with your advice to
"Educate yourself and choose for yourself".

The Question is How to do that.

Visiting the Websites of the various Valve Manufacturers seems like a Good Place to begin. Who KNOWS better than the manufacturers about the attributes of their valves.

Several in the past have suggested getting an "Independent Opinion". Fine. WHERE would you (anyone) suggest finding such a resource?

To date, NO ONE has provided an answer to that question.

Consumer Reports has never reviewed Heart Valves and is not likely to do so in the near future.

'AL Capshaw' (St. Jude Master's Series AVR recipient)

 

[Lisa in Katy]

Al - 100 years is just a figure of speech, not literal. However, by the time I have to have my St. Jude's replaced, perhaps it will have been around for a hundred years!

I don't remember and didn't find it in your profile. How long have you had your St. Jude's? Is there a reason you are planning your replacement? I'm wondering because after 10 years with my St. Jude's Medical Mechanical Heart Valve, the last thing I am thinking about is having it replaced. Realistically, I plan to have it for at least another 20 years. Even the On-X will be an "old timer" by then!

 

[njean]

I always find these valve wars so interesting!

Back in 1975 when I had my double-valve implant, I had no say whatsoever on what kind of valve I was going to get, nor did I care. I just wanted to be able to walk more than 10 yards before having to sit down to catch my breath.

I ended up w/the old ball in cage type (cooley-cutter valves) which now sit in the St. Luke's medical museum showcase in Houston, TX. And one of them, sits inside a jar in my kitchen cabinet!View attachment 6415

According to and in my humble opinion, the greatest surgeon alive, Dr. Denton Cooley, they were made of titanium and were suppose to last a lifetime. They lasted for 31 years and I led a perfectly normal, active life, coumadin and all, for all those years and for that, I'm eternally grateful!

Today, I sport my old, ball in cage type in the mitral position which is showing significant signs of wear and tear and will probably have to be replaced again in the near future, and then I have in the aortic postion, a brand new St. Jude valve which I received in 2006.

Do your research my friends and then go with the valve that you feel most comfortable with and then don't look back. Just go for it!

P.S. "How many of you are driving 30 Year Old Automobiles?"
And yes, Al, I still drive an original 1966 volkswagon beetle occasionally!