Getting past denial.

shop deals on amazon
Advertise with us
Shop deals on ebay
Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.
"I knew for 38 years that I'd need to get my heart fixed and it still came as a shock!"

Exactly! I knew the odds were good I'd need a new aortic valve, but it wasn't until August, when my Cardio said it's almost time, that I fell apart emotionally. My Mother said, ""well you've always known this..." You can still be in denial while doing the annual checkup dance for practically your whole Life...

-Dianne
 
I know what you mean about denial. I'm still there! I have no symptoms, but the cardiologist and surgeon both feel that this is the best time for me to get surgery since I'm young, healthy and my aortic valve is leaking more. I'm scheduled for surgery in January, but I'm still having a hard time accepting it.

Good luck with your surgery! Sounds like you are on the right track!
 
Bill B said:
My position on valve selection is to pick the surgeon and to let the surgeon pick the valve. That may be unpopular here, as this site aims in part to empower you with information so you can make better decisions. I spent a month trying to outsmart my surgeon before I concluded I would just potentially muck things up if I asked him to do something he did not favor, even though he seemed happy to oblige. I became enamored with all the unique features of one valve versus another. However, few to none of us here have any of the education, training, experience or credentials to evaluate rigorously one brand/model versus another. I thought I might but finally I decided I was just being a control freak for no good reason.
Click to expand...

I don't think that's an unpopular view. I believe most VR members chose the surgeon and let the surgeon chose the valve. I've been on the site since 2004, and a superficial observation is that the male members seem more interested in the valve model than do female members. Whether a member picks a mechanical or tissue seems to be evenly split.
I my case, I picked Paul Stelzer to do my Ross procedure, and when I needed to change plans, I then picked Nicholas Kouchoukos to do my replacement. I did tell Dr. K that I wanted a tissue valve, but that's as far as my imput into the specific type went.
 
Duffey said:
I don't think that's an unpopular view. I believe most VR members chose the surgeon and let the surgeon chose the valve.
Click to expand...

It's a subjective call but the way I look at it is that the choice of surgeon is really crucial. Few of us are equipped with great medical/ technical knowledge. We do what we can to learn but most of us are really not in a position to challenge a valve recommendation made by our chosen surgeon. I have a preferred choice, but if it's not to his liking, I will defer to the recommendation of my surgeon when the time comes.

Jim
 
it's fine to say you'll depend on the surgeon's expertise, but at the end of the
day, it's you, not the surgeon, who has to live with the valve. i'll make the
final choice since the widget is going into my body, and i have to deal with the
consequences. i'll certainly take the surgeon's recommendations into account,
but he'd better be prepared to convince me otherwise.
 
ChouDoufu said:
it's fine to say you'll depend on the surgeon's expertise, but at the end of the
day, it's you, not the surgeon, who has to live with the valve. i'll make the
final choice since the widget is going into my body, and i have to deal with the
consequences. i'll certainly take the surgeon's recommendations into account,but he'd better be prepared to convince me otherwise.
Click to expand...
Wow! My surgeon had strong reason to suggest the valve he did. I spent a month researching it before I could really appreciate that he was right. How skilled are you at evaluating the medical literature on valve choice? I've spent 30 years evaluating drug and device studies as well as designing them in the drug industry and was educated and trained in it. There are hundreds of papers on valve choice, and lots of unpublished data on newer valves. Most of the data are weak in a variety of ways and misleading in others. Be very cautious if you think you can make a choice that is better informed than your surgeon. Now, there may be equal choices that are then preference based decisions. Not so in my case. Also, to me it is critical to sucessful receovery that you believe in/have faith in your surgeon. I'm not saying you should be a total yes man. You should ask as many questions as you can to understand your situtaion and why the surgeon is recommending a certain approach or valve. There are some surgeons who are less decisive and leave the choice largely to the patient and family. I think this is rarely a good idea.
 
Bill,

You seem to ASSUME that (ALL?) Surgeons are fully knowledgable about ALL Valves and Procedures and will make the Best Choice for the Patient even though they have only known this patient for an hour, more or less.

After meeting / interviewing several Surgeons and reading comments here on VR.com about Surgeons Valve preferences, it became apparent that MANY had LITTLE knowledge of the On-X Valve Design and advancements.

It was also apparent that Many Surgeons Limit their Valve offerings to one or two Mechanical Valves and one or two Tissue Valves. Many Surgeons do NOT perform the Ross Procedure or offer Homografts. It is also known that Hospitals often put their Valve Business up for "competitive bid" and select 2 valves from each category. (I believe CC and Mayo are 2 examples).

Some of our members reported that the surgeons they asked about On-X dismissed it as "Too New, Too Untried" inspite of the fact that it was introduced to the World Market in 1996 and there are over 70,000 On-X Valves in place in 64 countries. It was approved by the FDA in 2001 for use in the USA. I guess those skeptical Surgeons are waiting to see the 20 year Studies before they will consider using this "New Technology". I wonder how many are offering the New and Improved Porcine Tissue Valves that have way less 'time in use'.

I have also found that Cardiologists are even LESS knowledgable about the On-X Valve. My own Cardio told me he has NOT reviewed the literature on On-X and he knows of my interest in these valves.

As you probably know, I consider the On-X to be the most technologically advanced Mechanical Valve Design on the Market today. This opinion seems to be shared by Dr. Puskas at Emory University, the sponsors of the NO / LOW Anticoagulation Studies, and Dr. Pettersson at Cleveland Clinic.

On-X valves are the 4th? Major Valve created by Jack Bokros, Ph.D. who developed the Pyrolytic Carbon used in the Leaflets of all the Bi-Leaflet Mechanical Valves. You may dismiss the studies and data, but you cannot disagree that it is the ONLY valve with the latest (improved) Pyrolytic Carbon Leaflets that are smoother and stronger than the earlier designs, it is the ONLY valve where the leaflets open a full 90 degrees (to reduce turbulence to levels seen only in tissue valves), and it is the ONLY valve with built in barriers to Pannus Tissue Growth.

In case you don't know, Jack Bokros consulted with St. Jude on the design of their original Bi-Leaflet Valve which has evolved into their Master's Series. In other words, the St. Jude Master's Series was Jack's FIRST Valve Design.

Jack later formed Carbomedics to produce Carbon Products for Medical Use and has patents on the Carbomedics and ATS Valves. He later formed On-X to produce his 'latest and greatest' design. Are you saying that his FIRST design is better than the one he came up with after 20 years of designing Heart Valves?

'AL Capshaw'
 
I personally wouldn't argue over the brand of valve, but I think most patients have a much better idea which THEY prefer to live with than any surgeon as far as Tissue or mechanical.. Considerring alot of which type of valve has alot to do with your personality and which YOU could better live with day to day, tissue with reops hanging over their heads or mechanical and dealing with coumadin, testing, bridging ect. especially since there are NO clear cut answers and IF you got a 2nd opinion chances are other top surgeons in leading center would suggest a different type of valve (again mech/tissue not brand specific) based on their experience. I think it is rather lazy for a surgeon to just give you which ever type of valve based on your age and don't want to see what YOUR preference is. Considerring there are people here that chose tissue at younger age or mech at older and are VERY happy with THEIR choice and what it means to them living day to day. I think chances are IF they went to a surgeon who gave them a valve based on their age and then later they found out their WAS a choice and they got stuck with a tissue valve but rather take coumadin than know they will need another surgery and have that hanging over them OR they got a mechanical valve because they were under 60 but they would rather deal with having another surgery in the future than take coumadin, have to test and worry about bridging, for other medical issues that might come up, they would be very angry. Especially IF they found out if they got a 2nd opinion, chances are that highly respected surgeon would have advised a different type. It is one thing to pick your surgeon based on his surgical skills and stats, but that doesn't mean they know which choice you would be happiest living with.
 
River-

You may also be interested in looking over www.heartvalvechoice.com and www.onxvalves.com

Actually, I have a St. Jude Master's Series Aortic Valve
which I obtained before I ever heard of On-X. If I ever needed another valve, the SJ Master's Series would be my Plan B.

To my (engineering) mind, the On-X offers the Lowest Risk of Clot formation for those times when an anti-coagulated patient may need to STOP taking anti-coagulation for invasive procedures such as other surgeries or colonoscopy with polyp removal, etc.
This is especially true for the Mitral Valve which has a higher propensity for clot formation. If and when I might ever need another valve, On-X would be my Plan A.
 
Thanks Al! (I forgot to put my name in my signature.) I'm an engineer too, so I'm interested in looking into this some more. Originally I didn't plan to pay a lot of attention to the choice within mechanical valves, but your post was thought-provoking.

I figure that while a surgeon is in the best position to make a choice, it doesn't hurt to ask enough questions to ascertain that he is basing his decision on something specific to my case, rather than going to a default position. :)

Michele
 
river-wear said:
Al, do you have an On-X valve? A quick peek at this site:
http://www.healthcentral.com/heart-disease/valve/benefits_of_onx_valve.html
makes me want to learn more. I like that it seems to click less. I'm not sure about the "less" anticoagulant part, but that's secondary to me at the moment.

Bill - can you hear your new St. Jude's valve? Does Dr. Miller use various types of mechanical valves?
Click to expand...

I was wonderring how you found that site, it seems odd, that when you search valves it takes you to the "Heart valve Education Center" that is just a page touting the benfits of the ON-X valve
I check the "about us", but it seems TO ME to be mainly a marketing site,
 
My cardio at Palo Alto Medical Foundation did NOT know about On-X!! That totally surprised me. When I talked to Dr. Miller about it, he said that there are no proven results that you would not need anti-coagulation other than aspirin. I didn't probe it more because I wasn't making the choice then. If I were to make a choice now, it would be a very difficult decision to look for another surgeon who would use On-X, although I would be very keen on it too. At this point, I don't think Dr. Miller does On-X but I could be wrong.
 
Michele,

We have several members who have chosen the On-X, some of whom had to persuade their Surgeons to use it for the First Time. I believe member "dtread" was a first timer. He has written several posts on his thoughts about the On-X valve, why he chose it, and how he convinced his surgeon to use it.

Member "ctyguy" is another On-X recipient. "Randy" was the first to receive an On-X a Cleveland Clinic. Check the Members List under "Community" on the Blue Line at the top of the page to find their profiles and links to posts they have written.

If you are interested in 'comparing numbers', see my post in the "St Jude" Thread (no period) under the Valve Selection Forum (be sure to specify "any date" in your search).

If you would like to know what surgeons use On-X in your area (or any area), contact the company at 888-339-8000. Catheran Burnett, R.N. (ext 265), can answer any of your questions and provide tons of data if you would like more information.

'AL C'
 
I am really biting my tongue trying NOT to respond to this thread in a particular way ...

So instead ...

Thank you Bill B and Lyn for all of your past wise contributions to these forums and in particular to this thread. Both of you continue to impress with your WISDOM, which to me is KNOWLEDGE/INTELLECT combined with knowing HOW, WHEN and WHY it should be displayed. Just a personal opinion...

Lyn, I also had a deep sternum infection as a result of AVR on 9/18 of this year. Quite an experience...

Best regards to all--

Bill
 
You must log in or register to reply here.

Latest posts

Back
Top