50 Year Old Male In Need If Bicuspid Aortic Valve Replacement

[Bryan B]

Arlyss,

I just wanted you to know I wasn't speaking to you, and your information regarding biscuspid valve disease and Ross Procedure was specific and valuable information IMO. My problem is when people make sweeping generalizations about a certain procedure, which might be taken to heart by new members and dissuade them from considering that option.

 

[Bryan B]

Les,

Now if we could get someone from Medtronics, St. Jude, On-X, Dr. Stelzer, etc. here to join in the conversation it would really be entertaining.

 

[Phyllis]

Have been following this thread with great interest and many smiles. Dick has the Edwards Magna valve and is happy with his choice, but I wonder why "someone" feels they have to push it so hard- is business down? I agree - we need to hear from some of the competition. You hit it right on, Karylnn with your description of what this site is meant to be. Amen!

 

[RCB]

It depends on "Whose ox is gored"

It depends on "Whose ox is gored"

Arlyss,

My problem is when people make sweeping generalizations about a certain procedure, which might be taken to heart by new members and dissuade them from considering that option.

I'll tell you Bryan there is no topic on this board where that is more true then in the case of warfarin. It happens all the time when posters give an opinion about warfarin who have never been on warfarin. If they post in the "Coumadin" section they quickly are corrected by Al Lodwick. Problem is
Al doesn't check the other sections and people say things that are totally untrue, quote their favorite study that SEEMLY back up their position or ( my
most upsetting ) fail to mention well known studies that state the opposite of
their position. So as one person who owes the last 44 years of his life to this
miracle drug and is tired of people talking about the "Nightmare of Coumadin",
all I can say is "I feel your pain".

On the other hand, remember the practice of medicine is an art and not a
science so most things said pertaining to it are generalizations.

Don't feel bad- rejoice in your own decision and great health!

 

[LUVMyBirman]

Not shy.........!And don't hide behind my words!

Not shy.........!And don't hide behind my words!

"Doesn't it appear there's a "plant" on board?"


Valve selection is personal choice. In light of that.....I do not feel we should be "promoting" or "shaming" a particular product.

We are all very well aware that this technology is here to help, in whatever form it may take. And lets recall...each one comes with it's own set of issues.

I don't see how a sales rep can solicit and push product, in disguise....without an invitation from the site owner. People are coming here for support and information! That is not reason to knock every other valve and procedure on the market.

Guess there is no shame in "attempting" to boost your company stock.

 

[geebee]

So as one person who owes the last 44 years of his life to this miracle drug and is tired of people talking about the "Nightmare of Coumadin", all I can say is "I feel your pain".

So true. I am 24 years on coumadin and thank God every day for "rat poison". Although I read of the diet problems some folks have, I have NEVER restricted my diet, have some occasional problems with bruising and, just 10 days ago, had my first real "bleeding injury" which turned out fine. Yes, I need to be careful but that has made me less accident prone. There are a few other issues that are unique to coumadin folks, like certain medical procdures, but I think that again makes things safer as people are more careful.

So, Mark, be assured that you can make the decision YOU FEEL is right for you and there will be facts that will back up that decision. Your decision will be the right one because it is one you made by doing your homework and asking for assistance. It is wonderful that all these choices are available - virtually a shopping mall for OHS.

Smiles,
Gina

 

[Bryan B]

ST,

Please don't take my posts as attacks, nor was I angered by your remarks. But the primary purpose of this site is to help INFORM new members who find themselves in the position of making one of the most important decisions in their life. Valve selection and Coumadin tend to be two of the touchiest topics discussed on this forum. I think it's important to communicate our experiences and knowledge without making other valid options we personally would not choose seem inferior. Personally I think someone with your background, knowledge, and experience can be a great asset to our community, but just because you or a loved one may have had a negative outcome with a particular valve does not make it wrong for everyone.

If I had it to do again I would choose the RP again. In my case it turned out that I was a perfect candidate in every way for the RP. If that hadn't been the case and the surgeon decided to go to my backup of the CE pericardial bovine tissue valve I'm sure I would have been just as happy (in the long run) that I was given the opportunity to live a healthier life. And in hindsight I'm not even sure I would choose a tissue valve as a backup if I had it to do over again. Now that I've had the "opportunity" to have experienced having my chest sawed open, I'm not sure I would willingly choose to select an option that assures resurgery assuming I live long enough.

Anyway...the point of this post is to let you know that my intention was not to attack you, but to clarify some points that I thought (IMO) might be misleading to those who may be new to the board and are in the position of choosing a valve for their upcoming surgery. I hope you continue to share your knowledge from your experiences working in a field that is of great interest to all of us. Just remember that most of us have had to make this decision (or have a loved one who has), and it is a decision we would like to think we made in our best self-interest after researching all of the options and considering what is important in our lives.

 

[geebee]

Bryan,
VERY well said.
Smiles,
Gina

 

[pegne]

Sheyla

Sheyla

I agree with your post because I lived it. I am also one who personaly does not think the RP is a good way to go. Those of you who have had success with the RP congratulations but my experience was a nightmare. I have spoken about it on this site before. In 1995 I was told by the surgeons at the Cleveland Clinic that the RP would prevent me from having another heart surgery, I had already had 2 OHS for 2 valve repairs. One in 1980 and another in 1992. Dr Delose Cosgrove performed my 3rd in 1995. In 1998 I found out it failed. I was referred to Tirone David in Toronto but did not want to go to Canada. I also went to Mass. General in Boston. In 1999 I had my 4th OHS at the University of Chicago Hospitals to replace 2 valves to correct the RP. Please read my personal story. I now have 2 tissue valves and have not felt better in years. The only medication I am on is Lasix and pottasium. Although I am on large amounts of lasix I can live with it. This is something I can personally speak of because I lived It.

 

[Ross]

As for my being either a salesperson or spokesperson for one of the valve companies, I can't fault the crowd for assuming that...but you are incorrect.
ST

Perhaps you could explain the email address that you registered with then? I hope your not going to tell me it's a false address. The IP address of the computer your posting on says different also.

I'm not here to attack you either, but we will not allow advertisement of a specific manufacturers valve. We have people coming in here for the first time scared out of their minds. The last thing they need is for someone to make a generalization as to what is best for them. They must decide that without undue influence, and make the decision on what is best for them, as well as receive comments on all options available.

Speaking of the email address you registered with, have you checked it? You have mail.

 

[Phyllis]

Sheyla,
Sorry if such a friendly group came down so hard on you, but I think we were very suspect when a new member was so adamant and seemed to be "pushing" the Edwards Perimount valve. Those members who have had a successful AVR with the valve or method of their choice (usually after much research, second opinions and angst) like to give "newbies", the benefit of their experience(good or bad). However, we realize that each person is an individual with different life styles, ages and other health issues and although we have healthy debates, we appreciate the fact that in the end, each has to make his own choice and we are quick to support them in that choice. My husband had the Edwards Magna valve last December and although he doesn't post (may be a good thing ), he is a huge proponent of the Magna valve, minimally invasive surgery and Dr. Cohn. To the point where I have had to tell him that he has gone overboard when meeting other AVR patients and has questioned the fact that they didn't have that valve, that hospital and that doctor.
We acknowledge that you claim you are not a sales rep of any valve company, but we would be interested in hearing more about your background and hence the knowledge and experience that you bring to this forum. In the end, we are all here only to help those in need of support and our prayers.

 

[Phyllis]

Your apologies are accepted, but we would still like to know your CV.

 

[Hank]

Apology Accepted?

Apology Accepted?

sheylathomas,

If an apology was in order, than an apology is accepted.

Just keep in mind - everyone - that if you are representing yourself or your loved ones, then say what you like. Don't use this forum to further the agenda of any company who should be paying for such a service.

Lets keep it informative with a sprinkle of controversy and an absence of commercialism and all will be fine. I'm sure I misspelled something there.

Carry on ...

 

[chilihead]

Mark,

I'm 41 now and had the same problem as you when I was 39. I had an aortic valve leaking severely and chose to have the Ross procedure. Once inside tehy found that my aorta was enlarged so the surgeon resized it and put a DACRON graft on it. I had my one year checkup last week and he told me it looked good and that I could do anything I wanted except heavy weight lifting. I take a baby aspirin and 50mg of Toprol each day with no problems. I think the key to having a successful Ross procedure is to go to a surgeon and hospital that does a lot of them. My experience was that nocardiologist would recommend a Ross if there wans't a surgeon in his "group" that did it.

Best of luck. I know the anxiety of it all sucks. I looked at the whole deal like it was a bad car wreck that I just had to encounter and move on. Deciding on the valve is the hardest part.

Regards,

Jim