Karlynn & others...

[LuvMyEvan]

As a surgeon, I can comfortably say that valve replacement via catheter is MAJOR surgery.

These are serious things for any potential valve replacement patient to consider in his/her valve choice. There are many other factors to consider as well.

Interesting that you word it that way because at one of the top 10 centers in the country for pediatric cardiothoracic surgery, they make it clear that it's a "procedure" when done by cath. They do not call it surgery. I suppose it's different for different doctors, though. I'm not sure what type of surgery you perform, but I know that those I spoke to on this topic (who expect to be among the first using the technique widely in the U.S.) call it a procedure.

I think their point is that yes, it has risks (any cath does, even without the valve replacement), but the risk rates are lower, and this is vastly different than open-heart surgery because the bypass machine will not be used, etc. That's my understanding from conversing with them on this topic over the past several months (starting back in early Sept.).

The last part of your post just solidifies exactly why it's dangerous to give advice about options as though any option is right for every person. It's not as easy as "one choice is best for everyone."

 

[LUVMyBirman]

Curious. If this catheter "procedure" is not open heart...how do they implant the valve?

 

[Lynlw]

Katie, Justin is 17 and just got his pulm valve (never had one before) and conduit replaced in May.Since we are talking about the newer advancements, I was wonderring if you have talked to Boston about the conduit and valves they are growing from the patients cells? I know they have done some already. Justin's docs at a few centers really think by the time he needs his conduit/valve replaced again, this will probably be his option, I think it is exciting for the younger kids especially since their own tissue should grow w/ them, Lyn www.caringbridge.org/nj/justinw

 

[Lynlw]

Curious. If this catheter "procedure" is not open heart...how do they implant the valve?

I'm not exactly sure but I believe it would be simular to getting stents placed by cath.Justin is one of the people that has problems w/ caths, so I know how dangerous they can be, but the recovery time is so much better.Lyn

 

[RCB]

Me too

Me too

Hello RCB,
I can tell you that I'm not the only person to have come away from this site feeling like it was mainly for those interested in mechanical valves. Several people have contacted me off of here over the last few years and said the same thing. I notice, sadly, that none of them returned. My advice to them was to stay and let people see positive stories from those with tissue valves. Unfortunately, they chose not to.

You know what you failed to realize is that my PMs say the same thing about
the tissue types. The emails state that the pro-tissue types come here with bad information about warfarin(even though they have no experience with warfarin), they think that reops are no big deal(even though they haven't had one), and most seem to feel
they will get the upper limits of a tissue valve rather than the lower limits (although statistically we know that can't be true). My advice to them is the same as your?s- everybody's has an opinion, stick around and make your own choice. You must realize that a lot of mech. valvers have left because they are tired of hearing the same old bad information about a mech. choice.

If you want, start a group to analyze all information posted on the website.
My contention is that there is more bad information about warfarin and reops. than anything else. I and a lot of mech.valvers think we know how that kind of a study would find. I would be interested in how the tissue types think the study results would be.

 

[Nancy]

Here's an interesting link:

http://www.mayoclinic.org/atrial-septal-defect/treatment.html

It's for atrial septal defects, and if you scroll down the page to non-surgical treatments, it talks about using an umbrella-like closure through a catheter.

Maybe the procedures are similar.

 

[Mike C]

I agree you do not want to scare people with things such as gauranteed surgeries, etc but you also do want to give unrealistic comfort. You do not want others thinking that my tissue valve will last forever or we are on the verge of rapid advancesd and techonology will save the day. Trust me, I hope it does but we need to be cautious in this approach, thjings change rapidly and many of these new advances are in their infancy or minumum childhood, they can fall through and many times do. How many wonder drugs have been taken off the market?

The other thing, a few people have complained recently towards the bias towards mechanicals, i dont see it. In my six months on, i ahve been surpirsed by the number of people offering the facts as to why or why not tissue, mechanical, repair, etc.. I actually think tissue gets a great deal of attention, possibly even too much in the younger people.

Neither valve is good or evil, they are tools, its important to get the best tool for the specitic job, but even then you may be okay and be successful with a differnt tool.

I do not beleive these recent threads are helpful to people recently diagnosed and in need of help.

This a great site with great people that lay out the facts, their experieinces and their support. With that said, it is but one source of information and people obviosuly should not rely on it alone.

 

[Wise]

I agree you do not want to scare people with things such as gauranteed surgeries, etc but you also do want to give unrealistic comfort. You do not want others thinking that my tissue valve will last forever or we are on the verge of rapid advancesd and techonology will save the day. Trust me, I hope it does but we need to be cautious in this approach, thjings change rapidly and many of these new advances are in their infancy or minumum childhood, they can fall through and many times do. How many wonder drugs have been taken off the market?

The other thing, a few people have complained recently towards the bias towards mechanicals, i dont see it. In my six months on, i ahve been surpirsed by the number of people offering the facts as to why or why not tissue, mechanical, repair, etc.. I actually think tissue gets a great deal of attention, possibly even too much in the younger people.

Neither valve is good or evil, they are tools, its important to get the best tool for the specitic job, but even then you may be okay and be successful with a differnt tool.

I do not beleive these recent threads are helpful to people recently diagnosed and in need of help.

This a great site with great people that lay out the facts, their experieinces and their support. With that said, it is but one source of information and people obviosuly should not rely on it alone.

Well said Mike C.

 

[Nancy]

Well said, Mike.

It is VERY important to have discussions from people's actual experiences. It doesn't matter if the facts don't fit EXACTLY with what someone else is or has been going through. It is just information to ponder on.

Actual situations that people have had, although hard to hear, are helpful, I don't think this site has ever sugar coated anything, nor do I think it should.

New ideas frequently do not pan out, once they start to actually be used. I will mention once again about the Silzone and Synergraft valves and some models of Bjork-Shiley. We have members here who have had some very sad experiences with these valves when they were in their trial stages.

Sure, SOMEONE has to try the new stuff. But go into it with eyes WIDE OPEN and without rose colored glasses.

And think about whether you want yourself or a loved one to be one of the first few who try something that has no track record.

Silzone and Synergraft were both touted as the "wunderkinds" of the valve world. Salesmen are very persuasive, that's why they go into that profession.

Do a search on this site about both of them and read every post about them, making sure you read the posts "from the beginning" (a little switch at the botttom of the page).

My husband has had to go through three "recall" experiences. He has a Bjork-Shiley valve, and there was a news story about sudden deaths with this valve. We had no information about which model was the problem. He had to go through some extensive testing to make sure his valve was OK. Then came the Silzone scare. I had to do a search for his model number from St. Jude to make sure his valve was not involved. Then came a Guidant pacemaker problem. There again, I had to do a thorough search to make sure his was not involved.

All of these situations are nerve-wracking and cause unnecessary angst.

Fortunately, for my husband, everything (so far) has been OK.

Others have not been so lucky.

When you do your search, you will see some of the stories.

People are not trying to pour cold water on new ideas. People here are just trying to suggest caution. Everyone wants to get better, and we all want people to get better safely.

I guess caution is the operative word.

Never mind about the search, here are the links:

http://valvereplacement.com/forums/search.php?searchid=273667

http://valvereplacement.com/forums/search.php?searchid=273670

http://valvereplacement.com/forums/showthread.php?t=1118&highlight=Arnold

http://valvereplacement.com/forums/showthread.php?t=1500&highlight=Arnold

http://valvereplacement.com/forums/showthread.php?t=1959&highlight=Myrtle

http://valvereplacement.com/forums/showthread.php?t=1261

 

[Karlynn]

Kind of funny how the longer one of these contentious threads goes on, the more understanding evolves and we realize that most of us are not as far apart in our views as we originally thought. I honestly can't think of one member, even those with the strongest opinions, have a "one size fits all" philosophy. If either of my young 20-something children were to find out today that they needed a valve replaced, I would assist them in researching all options. I think the Ross Procedure holds a lot of promise for those eligible, as well as the On-X valve. But the "old standards" also have a lot of merit. And all "old standard" options, whether mechanical or tissue, have advance quite a lot in the years since my replacement.

I had some time to think on the train ride to and from Chicago today (Wasted 6 hours to attend a really useless 2 hour freelance training meeting. ) Mike C's post touched on it. I think those of us mech valvers that have been on here long enough can't help but feel very disheartened when a new member comes on, they're 30 years old and say they are going to go with a tissue valve because they hate using an electrical razor. Okay, that's never actually been said, but that's what I picked in order to show that most people that come on choosing tissue do so to stay away from Coumadin, and quite frequently because they are scared to death of it, mostly for very erroneous, or at the very least, over-inflated reasons. And yes, medical professionals are still telling people on Coumadin to use electric razors (Randy!), or make sure your kitchen knives aren't sharp or never eat a salad ever again or you may die. Another one of my favorites is "I'm going with tissue because I lead an active life." Coumadin is only for couch potatoes. (Pass that bag of chips and hand me the remote - would ya?) I've been on Coumadin for 14 years and my sweet mother-in-law STILL makes a Jello salad for me at family dinners because she knows I can't have greens. So we mech valvers may seem to spend a lot of time dispelling myths and disputing bad information about Coumadin and I think this may be what makes us look like we are pushing mechanical.

 

[Rain]

That?s really funny Karlynn. lol

That?s really funny Karlynn. lol

I didn?t go look it up... so it may not be true.... but when I was in school I used to get a nose bleed every time I ran track. The school nurse always told me to eat lots of jello because it was high in K!! So Ma worrying about salad and giving you jello struck me as pretty funny.

?One of my 20-something kids? does have to make valve decisions. I suppose that may be why I see it the way I do. Ry & I have both done a lot of research. And for goodness sakes let me tell you I have NO desire to make a valve decision for anyone... including Ryan. I also have no desire to get involved in another of these threads so I?ll just say......

People can be given the facts in a respectful way. I think if that happened it would settle the dispute.

 

[Karlynn]

The school nurse always told me to eat lots of jello because it was high in K!! So Ma worrying about salad and giving you jello struck me as pretty funny.

I've just come to the shocking realization that my mother-in-law was really trying to kill me!!!!!!

 

[Dirk]

This is a long discussion now, but I want also to give some comments.

The problem is that nearly nothing in biology is predictable. So for one person a biological valve my last 20 years, for anaother one 5 years.

Second, most of all studies have been conducted by people or companies, which have a particular interest to achieve a specific outcome. There is in no way neutral information.

Of course, On-X publishes only positive studies.
St. Jude also achieves low thombosis rates, and ATS claims to be better.
However, if you look into the studies, you really do not find real evidence that one of the valves performes so much better than the other one.

Nobody can guarantee you, that you will not get a valve induced stroke although being perfectly in the correct INR range.

Nobody can guarantee you that you will not get a valve induced stroke from the biological valve you have.

The Ross procedure can fail also: I recently heard from a girl, which hat to get replaced both valves by mechanical ones after one year.

And nearly everybody neglects the possible risks induced by the HITS produced by all bileaflat vlaves.

Look, what the surgeons say:
There is not one single acceptated opinion between them. A lot of surgeons do recommmend mechanical valves, however, my experience was, when I asked them what they would choose for themselves, most of them said: "A biological valve because I do not fear the second surgery."

So the personal decision depends the personal ranking of possible risks and possible benefits which both are not really absolutely proven.


Greetings

Dirk

 

[Randy & Robyn]

Of course, On-X publishes only positive studies.
St. Jude also achieves low thombosis rates, and ATS claims to be better.
However, if you look into the studies, you really do not find real evidence that one of the valves performes so much better than the other one.

Al Lodwick recently posted references to two independent studies that show statistically significant lower rates of thrombogenic complications with the On-X than other mechanicals have achieved.

http://www.valvereplacement.com/forums/showthread.php?t=14977

These studies were not influenced by MCRI, the manufacturer of the On-X, in any way.

The FDA is also under the impression the On-X may have the edge and is allowing a lowered anticoagulation trial to proceed based on favorable clinical data.

However, I admit, similar trials have failed before. The question remains as to whether the On-X can perform well with lowered anticoagulation. Only time will tell.

Randy

 

[geebee]

Look, what the surgeons say:
...... A lot of surgeons do recommmend mechanical valves, however, my experience was, when I asked them what they would choose for themselves, most of them said: "A biological valve because I do not fear the second surgery."

I am really curious - were these surgeons who had personally gone through OHS?

 

[LUVMyBirman]

Good info Dirk. Curious, are you a surgeon? It sounds like you may work in the medical field

 

[LUVMyBirman]

Good info Dirk. From what I know...failed Ross proceedures can be corrected. I think it is more risky than an initial valve implant. How is the woman you are referring to doing?

Curious, are you a surgeon yourself? It sounds like you may work in the medical field

 

[Granbonny]

I know it is different with everyone who has had a valve replacement.However, I will be coming up 4 years March 25th. I have always gone in for a 6 month visit with my Cardio..Grant you Five minutes. But, I was always so glad to do this..and hear..you are doing great..Also, I have always gone for an annual echo..followed by a Cardio visit a few weeks later...this past visit, I was allowed 8 months before I see him again..my point......being...Frequent visits to your Cardio..Annuals echos...ect....I would think..would catch a problem...( I home-test for my coumadin, so I know it's in range)......I realize Insurance may be a problem for some... but, having a small range of visits with my Cardio..I feel has really helped me go on with life and not worry if my valve is going South. It is a comfort Zone for me..I know, I have read where many members go more than 1 year for their echoes...Like I said, every member has different Cardios...some like annual echoes, some have posted, they go every 2 years, ect...Same thing with my dentist .make sure I go every 6 months. Learned the hard way. Have lost 4 back teeth..due to gum disease....Bonnie

 

[gadgetman]

*CLANGING BELL* (Cort ©)
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[RCB]

And nearly everybody neglects the possible risks induced by the HITS produced by all bileaflat vlaves.

Look, what the surgeons say:
There is not one single acceptated opinion between them. A lot of surgeons do recommmend mechanical valves, however, my experience was, when I asked them what they would choose for themselves, most of them said: "A biological valve because I do not fear the second surgery."


Dirk

I think the key phrase here is, "possible risks" and also there are studies that show that HITS are not a problem in adult, because they have time to resolve themselves in the blood stream before they reach the brain. Are you familiar with those studies?

You know I have heard that statement about what surgeons say they would personally pick a tissue valve made several times here. Yet when I ask surgeons and cardiologist about that very statement, to a man and woman, no one has every heard such a blanket statement. Furthermore, of course
surgeon don't fear surgery- It is kind of like talking to a used car salesman about whether or not one of his "creampuffs" is a great car. They all tell me they would base their decision on the best advice they could get at the time
about their own case.

Can you direct me to a citation for that quote?