How to approach surgeon RE: using ON-X valve

[theTree]

I'm looking for some advice about how to effectively approach a surgeon to consider using the On-X valve. I've read a lot about the valve on this forum, and found it all very useful. I'm a UK resident, and will have surgery in the BRI in Bristol.

I had a meeting with my surgeon a few days ago... basically, they are going to try and repair my aortic valve, though of course will have something on standby if needed. I'm keen for this to be the On-X. My surgeon is a great guy, and listened to what I had to say about the valve (he is familiar with it). The problems are as follows:

- My hospital has no contract with MCRI (no On-X)
- My surgeon hasn't used one before, and so would be hesitant about it
- My surgeon is (rightly) skeptical about what I've read about it, as MCRI is ultimately a business, and will try and push their valve through whatever means.

These things had occurred to me, and I didn't spend time debating the topic.

I'm glad my surgeon is skeptical; thats a good scientific stance on a relatively new technology. However, the fact that MCRI is trying to market their valve doesn't necessarily mean its being unjustly promoted - aside from its relatively young age, I've read only good things about it in a number of performance areas:

- hemodynamics
- possibly more forgiving to fluctuations in INR
- More resistant to pannus ingrowth
- Generally less morbid events during and post surgery vs. other mechanical valves

These things are enough reason I think to strongly consider it. Then of course is the possibility of reduced anti-coagulate therapy in the future...

I want to present him with some data that is completely objective, so not linked with MCRI. I've also read that some surgeons in the UK did use this valve for the first time, and found it to be a good experience - do you think its worth trying to find some names for him so he can liaise with them?

I certainly won't push this valve on him if he's completely against it, but a healthy skepticism isn't reason enough to write it off completely... I'm not going to miss out on it if its the correct choice! I realise this topic has been bashed a lot already... please find some patience for me

 

[bit of a chicken]

surgeos/ valves

surgeos/ valves

hELLO, JUST WANTED TO RESPOND TO YOU BECAUSE I see you are in south west, england like myself. Wish you good luck, all your info has lost me.... i am new to all this really . I have a bicuspid valve and born with coarctaion aorta that was repaired as a child. I am 35 yrs old . You do not say much about your valve , isit bicuspid ?
I have just been to BRI for cardiac mra mri part of evauluation by cardiologists. i must admit that after lying in the machine for 1 hr and 40 mins i am keen to get my results and then hopefully forget all about it for another year at least !!
I am hoping to not wait too much longer. as for valve replacements. my cardiologist has said that mine will not probabaly need replacing for possibly 10 yrs, so i am only just starting to realise what all this is about, i am foxed !!love to send a pm to u but cannot work out how, all new to me haha and good luck, every one else out there will give a better informative response than me i am sure, i am amazed by how knowledgeable every one is, great and well

 

[netmiff]

theTree : I think if you contact the makers of the ON-X valve, they would be more than happy to have a fairly local surgeon who has used the valve contact your surgeon. Maybe they can even find someone willing to "assist" or just be there when he first uses it, just to help walk him through, in case he has any questions/concerns etc.

You have presented your case here logically, and if you want to present it to your surgeon in that manner, I am sure he would listen to you.

Anyway, there will be other people along with more information soon. And maybe if you can change the title of the thread to something more like "how to approach surgeon re using ON-X valve" you might get some of the members who are ON-X -lovers to respond faster

bit of a chicken : at the top of the page is a blue bar, click on UserCP and there is a drop-down menu; one of the choices there is "send PM", just click it and follow the instructions!

 

[bit of a chicken]

thanks !!

 

[theTree]

thanks for the replies guys.

netmiff: Good idea about changing the title; I've done it, though its not reflecting in the topic listing. Perhaps it will refresh soon....

 

[Ross]

thanks !!

Not a bit deal. Don't worry about it.

 

[Ross]

thanks for the replies guys.

netmiff: Good idea about changing the title; I've done it, though its not reflecting in the topic listing. Perhaps it will refresh soon....

You can't change it, but I can. Just tell me what you want it to say and I'll make it so.

Might also want to see this link if you haven't already:

http://www.onxlti.com/onxlti-contactus.html

 

[ALCapshaw2]

Tree,

You may want to contact Catherine Burnett, RN, who is the Manager of Education for On-X (among other duties). She can send you all sorts of 'back-up' information on their valves. Her e-mail address is [email protected] and her direct telephone number is 512-339-8000 ext 265.

Also see their websites at www.onxvalves.com and www.heartvalvechoice.com

Of particular interest is their Biographical Information sheet on Jack Bokros, Ph.D., who designed the On-X valve and created the company. He was also instrumental in designing the first Bi-Leaflet St. Jude valve in the 1970's after his group created the Pyrolytic Carbon material that is used by ALL of the Mechanical Valve companies.

He later formed Carbomedics and holds patents on both the ATS and Carbomedics Valves.

Bottom Line: Jack Bokros has been designing Mechanical Heart Valves for 30 years and is the probably the 'key man' behind the designs of the Mechanical Heart Valves made in the USA (except perhaps the Medtronics Hall valve which is an old single leaflet design).

'AL Capshaw'

 

[theTree]

Thanks AL, interesting information; particularly because my Surgeon favors a Carbomedics valve.

Ross, if you wouldn't mind changing this thread title to 'How to approach surgeon RE: using ON-X valve' that would be great.

 

[bit of a chicken]

ross, thanks !! I am slowly working this forum out, never visited one before, finding all the info quite overwhelming but incredible too !! many thanks BIT OF A CHICKEN X

 

[Roger Frank]

I requested On-X for my AVR last August. This was the first my surgeon had installed and he said it was "no big deal". (he was referring to On-X vs other valve choices)

It's your body, one would think you'd have some say in the device...go for it!

 

[Duff Man]

I think the reception of your valve preference depends mostly on the surgeon. Some seem fine with trying the valve and others get pissed when you have the audacity to usurp their expertise.

 

[dtread]

I was first for On-X where I had my surgery done. Here in a nutshell is how it went.

I was informed by my cardiologist that I would be having St Jude mechanical implanted and was told who my surgeon would be. I subsequently conducted research, and like you, decided that I wanted On-X valve, and I told my cardiologist that. He was totally unfamiliar with On-X, but indicated that I could discuss with the surgeon, So I made an appointment to see the surgeon.

When I saw the surgeon, I had printed out the information from the On-X Prosthetic Heart Valve Catalog, found at: www.onxlti.com/pdf/product-catalog-b.pdf
This shows the specifications for the On-X valves and the insertion tools. I indicated to the surgeon that I had conducted research and would like to have the On-X valve, and handed him the information on the On-X valve. He initially dismissed the notion, but I politely and firmly persisted. We discussed for awhile, and he finally agreed to take a look at it, also asking me whether I was "ready to be the first" (i.e., referring to the fact that I would be the first to have an On-X implanted by him). I indicated that I was.

I had already been in touch with On-X, and with my permission they followed up with the surgeon to ensure that the proper valves and insertion tools would be there during the operation. On-X even sent in a representative to advise the surgeon if needed during the operation.

Following the surgery, my surgeon indicated that the "surgery went perfect" (his words). I cannot guarantee that you will have the same results. However, I can say that in the year in a half following the surgery I've had no regrets whatsoever regarding the decision I've made, and have nothing but praise for the On-X valve. It performs flawlessly for me, and I give it regular workouts all the time in the gym and on my bike (I'm not a sedentary person).

I recommend that you contact On-X as Al Capshaw indicated (i.e., Catheran Burnett), and they can advise you further and answer any additional questions that you might have, as well as interact with the surgeon (with your permission) to get everything set up for your surgery.

Good luck with your surgery no matter what choice you make.

 

[theTree]

Duff Man: Yes, this is the fine line I'm nervous about treading!

dtread: Thats an encouraging story - I'm thinking of using a similar strategy. Following AlCapshaw's suggestion I've contacted Catherine Burnett and already received some information back that will prove useful, as well as contact with the UK supplier of On-x. Thanks all for the encouragement and advice; I'll keep this updated on my progress!

 

[Ross]

Duff Man: Yes, this is the fine line I'm nervous about treading!

dtread: Thats an encouraging story - I'm thinking of using a similar strategy. Following AlCapshaw's suggestion I've contacted Catherine Burnett and already received some information back that will prove useful, as well as contact with the UK supplier of On-x. Thanks all for the encouragement and advice; I'll keep this updated on my progress!

It's YOUR BODY and YOUR LIFE. You should be able to request any damn valve you want and the Doctor shouldn't throw a fit over it. I know some do and those are the ones I wouldn't want touching me.

 

[theTree]

It's YOUR BODY and YOUR LIFE. You should be able to request any damn valve you want and the Doctor shouldn't throw a fit over it. I know some do and those are the ones I wouldn't want touching me.

Indeed

My surgeon has been great so far - open and receptive to all my questions etc. He also didn't write off the On-x, placing the decision in my lap, though expressing his doubts.

The guy from Pulse Surgical (UK On-x supplier) has been helpful as well.

 

[sue943]

There are two that I know of who have the ON-X in the west country including Woodbutcher who is currently in hospital having had surgery on Thursday.

 

[theTree]

Medicine is a different kind of business as we all know. This is not the type of business where people should select their best treatment option, at least in some cases. If this were to happen, people would be using the internet and looking up all kinds of tests that they would pay for doctors to run that aren't needed. Doctors (usually) make the best treatment option for their patient.

While I certainly admire your courage to do your own research and face a surgeon on the matter, I would recommend you let the surgeon pick which valve is best for his patients. The surgeon is the one who deals with heart-related issues on a daily basis, not to mention, carries a hefty degree title: MD.

After all, no one knows how your body will react to any valve. Statistics are not everything in medicine.

All good points, and something that I'm keeping in mind. Ultimately, my surgeon will make the decision - and it would be presumptuous of me, not to mention a little arrogant, to overrule his experience! However, I had to mention it to him, other whys it would play on my mind too much.

Added to this, there are plenty of surgeons, each with their own considerable education and experience, and are vigorously behind the valve.

I don't plan to call the shots on this, but did at least need to broach the subject.

Thanks for your thoughts,

 

[ALCapshaw2]

Medicine is a different kind of business as we all know. This is not the type of business where people should select their best treatment option, at least in some cases. If this were to happen, people would be using the internet and looking up all kinds of tests that they would pay for doctors to run that aren't needed. Doctors (usually) make the best treatment option for their patient.

While I certainly admire your courage to do your own research and face a surgeon on the matter, I would recommend you let the surgeon pick which valve is best for his patients. The surgeon is the one who deals with heart-related issues on a daily basis, not to mention, carries a hefty degree title: MD.

After all, no one knows how your body will react to any valve. Statistics are not everything in medicine.

I'm sorry, but I simply DO NOT accept your *assumption* that EVERY Surgeon knows all about ALL of the Valve Options and is skilled in using each option.

The most obvious arguments against this philosophy are the Ross Procedure and Surgery of the Aorta which require knowledge and skill that is another level above the average Bypass and First Time Valve Replacement Surgeon.

How many surgeons who do NOT perform the Ross Procedure are very likely to recommend that solution to a potential patient, and send him away to another surgeon?

When it comes to Valves, my experience from interviewing several surgeons is that they usually limit their offerings to one or two mechanical valves and one or two tissue valves with which they have experience. I met one surgeon who made it pretty clear that if you wanted him to do your surgery, you would be getting a St. Jude Valve. End of conversation.

MANY of our members have reported surgeons who dismiss the relatively new On-X valve as "too new or too little history". HUH?

This kind of response begs the question of: OK, How many valves over how much time would it take for you, Dr. Surgeon, to feel comfortable recommending and/or using a "new" valve?

If every surgeon took this 'wait and see' attitude, NO progress would ever come into being because NO ONE would actually use the New Technology, regardless of how long it had been since it was invented.

Personally, I would not want to be one of the first to try a new technology, but one that has been out for several years with thousands of successful case histories seems like a reasonable choice to gain the benefit of technological improvements.

The On-X Valve was introduced to the World Market in 1996 and was approved for use in the USA by the FDA in 2001. To date, 70,000 On-X valves have been sent to market. Apparently MANY surgeons are totally unaware of those statistics.

I would guess that VERY FEW Surgeons (or Cardiologists) are aware that the Pyrolytic Carbon Leaflets in the St. Jude, ATS, Carbomedics, and On-X Valves were ALL designed in part by the SAME individual, Jack Bokros, Ph.D. whose group created the Pyrolytic Carbon material for an application in the Nuclear Power Industry in the 1960's. He has been designing Heart Valves ever since. Note that he Founded Carbomedics and On-X. He also holds patents on the ATS and Carbomedics valves.

Not all Surgeons (or Cardiologists) keep up with advancements in (Valve) technology. Sometimes they need to be brought up to date by outside influences.

My own Cardiologist is aware of my interest in the On-X Valve but admits that he has yet to actually familiarize himself with it's attributes or design.

I expect that similar arguments could be made about the advancements in Tissue Valve Technology.

'AL Capshaw'

 

[dtread]

Comment by UIHCCHI on 12/16/08:

"Medicine is a different kind of business as we all know. This is not the type of business where people should select their best treatment option, at least in some cases. If this were to happen, people would be using the internet and looking up all kinds of tests that they would pay for doctors to run that aren't needed. Doctors (usually) make the best treatment option for their patient.

While I certainly admire your courage to do your own research and face a surgeon on the matter, I would recommend you let the surgeon pick which valve is best for his patients. The surgeon is the one who deals with heart-related issues on a daily basis, not to mention, carries a hefty degree title: MD.

After all, no one knows how your body will react to any valve. Statistics are not everything in medicine."

Response:

I do not believe in being a passive sheep when my own well being is at stake; particularly for a surgery as significant as AVR.

When it came to my own surgery, I wanted to be sure that what the surgeon was doing was the best for my long-term benefit.

The cardiac surgeon is typically involved with the patient for the AVR itself, and for a few follow up visits afterward (in my own case the last time I saw my surgeon was three weeks after the surgery, and I may never see him again) [Note: I sure hope I never have to see him again, at least in the OR; not that he is not a nice fellow and all, but I just don’t want to go through that again, if you know what I mean]. Since the surgeon does not seemingly have that long term follow up contact with the patient, it would seem to me that the Cardiologist might be in a better position to be able to best recommend valve type/brand. However, even the Cardiologist also may not have that much influence on which valve brand is used, since the hospital or medical center may have the biggest influence of all in the determination.

I believe that the way it works in most cases is that the hospital or medical center has contracts with specific medical suppliers for goods. I do not believe that most medical centers have a stock of valves on hand from all the various valve manufacturers; i.e., ATS, Carbomedics, Edwards, Medtronics, On-X, and St Jude. And that the surgeon makes a decision that “I think I’ll use an ATS on Mr. Smith, a Carbomedics on Mrs. Jones, an Edwards on Mr. Miller, a Medtronics on Mrs. Fuller, an On-X on Mr. Taylor”, and a St Jude on Mrs. Howard.

I believe that the valve choice has already been decided long ago through the contract that the medical center or hospital has, and the surgeon pretty much uses the same valve on whoever comes through for surgery. The contract may have been decided by whoever was the low bidder, or there may have been other factors. The health insurance companies may even have an influence. It is unclear how a particular medical center or hospital selects which valve brand or brands to use.

The biggest decision pre-operatively in most cases seems to be biological versus mechanical. Beyond that, the hospital or medical center probably uses whichever valve company has the contract with the facility, unless the patient requests something different.