BAV with moderare-severe regurgitation. when you had it done?

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Hello everyone, it's great i found this place!
Im Chris, 35 from Romania (eastern europe) and i have had moderate-severe regurgitation for the last 15 years of my life.
my stats are :

no symptoms (since diagnostic only PVC's wich led me to investigations in the first place)

mild LV enlargement - 120 ml/m2 or 62 mm diameter (im almost 2m in height and 100 kg - that's really tall)

no aortic dillatation (4 cm diamater but indexed to my height and weight comes out normal)

moderate-severe regurgitation ( 41 ml regurgitant volume, most agree that it's severe over 60 and mild below 30)

normal ejection fraction - 55% (a bit low but really depends on the investigation and the doctor who is doing it)

no mitral valve disfunction (trivial regurgitation)


So, at this point, i do not feel, as a doctor, i should have AVR but studies are clashing on each other and i am a bit confused. I live in a country with great doctors but being a relative small place we do not have specialised AVR centers. Our surgeons do a wide array of OHS's and if i go and talk to any of them they will go - "so? let's do it! mechanical, right? tommorow?" :)) - in my country is free, so there's no money issue here.

My stats are more or less the same since diagnostic at 21 (now 35). - mild LV enlargement (some even had seen 72 mm in diameter wich is a lot even for my stature) with the last MRI showing 120 ml/square meter of body surface. (normal is 100).
My ejection fraction had been around 50-60% my whole life (depending on the investigation and the doctor performing it) the last MRI showed 55%
My aorta had been growing really slow (from 3.6 to 4 in 14 years) and i can be labeled normal until 4.5 cm for my age/height/weight.

Knowing that outcomes are not all spectacular for mechanical valves in terms of coagulation risks and a tissue valve is out of the question for me, Ross procedure is riskier and repair is not for me (calcified leafets) , im not eager to get it done, althrough i might because anxiety is eating me alive :)

When you were reffered to a surgeon? The last MRI cardiologist told me i should visit a surgeon, see the options. when i asked why she said - well, the ejection fration is pretty low (55%) and there's enlargement also...and this can develop. I said that it had been the same for the last 15 years and she said - yes, but you are 35 now.

Thanks a lot for the replies if any!
 

Paleowoman

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Hi Chris - I never had regurgitation with my BAV so I don't know what to say regarding your issue but I wanted to say hello and that I hope someone here has been in the same position as you and will respond soon. The only thing I will say is that just this last year it is not a simple matter of mechanical versus tissue in a 35 year old as there is a new tissue valve which is designed to last a lot longer than the previous generation of tissue valves and is being used in younger patients - it's Edwards Inspiris Resilia. Do an internet search for that, also a search on the forum. All the best in your way forward !
 

tom in MO

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I can't tell you whether or not your numbers mean operation or not. I can tell you my own experience with my bicuspid valve. First there was a murmur and when technology was available I had an echo which told me I had a bicuspid valve. Then 7 years later another one and they told me I needed an echo every year because I was getting significant stenosis. I had an echo every year for about 5 years and then they said you need to contact a surgeon and have the operation within 2-months or you may suffer a "syndrome known as sudden death." I too was asymptomatic until a few weeks after they told me I needed to schedule surgery, when I got severely dizzy, had to sit down and had trouble regaining my faculties. I had the operation in 2-months and my surgeon told me my native valve was shot and would have soon failed.

You say that nothing has changed in 15 years, but by MRI your aorta has grown from 3.6 to 4. Maybe this is a warning that your cardio finds disturbing. A consultation with a surgeon may bring the result of "let's monitor you more often and wait awhile." For me and my BAV, it's not a linear change at the end of the valve's lifespan. It slowly changes and then more quickly at the end. One way to look at it is that if it will need to be done relatively soon, what is gained by waiting?


Per the Edwards valve, their home page for the valve states "RESILIA tissue tested against tissue from commercially available pericardial valves from Edwards in a juvenile sheep model. No clinical data are available that evaluate the long-term impact of RESILIA tissue in [human] patients."
 

Paleowoman

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Hi Tom - no valve manufacturer can wait thirty, forty, fifty years watching human guinea pig patients before they can fully assess the life of a new valve, but they can do tests which are done on all the previous valves, as in testing them on juvenile sheep, and say that the new valve lasts much longer than a previous type of valve. Just like any pharmaceutical company, Edwards have to state "No clinical data are available that evaluate the long-term impact of RESILIA tissue in [human] patients" because of the length of time. Of course no one can be sure how long a valve will last, whatever type of valve, but there will be advances in valve manufacturing and it would be a Luddite who ignores advances. Maybe one day they will also bring out a mechanical valve which doesn’t require the recipient needing anticoagulation therapy !
 

pellicle

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Paleowoman;n886010 said:
Hi Tom - no valve manufacturer can wait thirty, forty, fifty years watching human guinea pig patients before they can fully assess the life of a new valve, but they can do tests which are done on all the previous valves, as in testing them on juvenile sheep, and say that the new valve lasts much longer than a previous type of valve.
exactly the reasons they are called projections and Your Milage May Vary ... so equally you should be skeptical of makers claims

Just like any pharmaceutical company, Edwards have to state "No clinical data are available that evaluate the long-term impact of RESILIA tissue in [human] patients" because of the length of time.
not really, we do actually have over 50 years of actual clinical experience with many drugs which remain unchanged. Further drugs are not expected to remain operational in your system for 10 years ... while valves are.
 
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Paleowoman

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What I meant was regarding pharmaseutical companies and with testing valves on 'juvenile sheep' rather than waiting years and years with a few human guinea pigs when a new valve is developed, is that if you look at any new medication at the data the pharmaceutical company gives, they will say that with rats, or monkeys or dogs, or sheep, x or y drug did this or that, or didn't do this or that - they often cannot know 100% how a drug will turn out after time in humans, but they make a good projection based on tests they have done, there is no other way. Sometimes new medications are withdrawn after being on the market for some time. The same with new heart valves. How can there ever be progress if we had to wait fifty years with some human guinea pigs ?

Don't know how I could have edited your post above Pellicle ! Forum gremlins !
 
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pellicle

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Paleowoman;n886017 said:
Don't know how I could have edited your post above Pellicle ! Forum gremlins !
Me neither, maybe hank has given you admin privilege?

My point is that (as I said) it's all conjecture. Expectations, Projection, ... So everything I wrote is bang on
 

Paleowoman

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There’s a wonderful chapter in Dr James le Fanu’s book ‘The Rise and Fall of Modern Medicine’ about open heart surgery. In the early days of open heart surgery, prior to 1955, simply loads of patients died catastrophically during surgery. You might have thought that surgeons would decide that open heart surgery was too risky, and, in fact, many did think that, but since the patients, children mostly, were probably going to die anyway they carried on making newer and improved techniques - even in 1954 the heart lung machine “remained a highly lethal procedure” and so on until it was improved. It wasn’t until the 1960’s that they started to replace heart valves in adults ! Thankgoodness for progress !
 

pellicle

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Paleowoman;n886019 said:
...In the early days of open heart surgery, prior to 1955, simply loads of patients died catastrophically during surgery. You might have thought that surgeons would decide that open heart surgery was too risky, and, in fact, many did think that
exactly why the guidelines started out the way they did and put the concept foward that you do surgery when the risk of death in surgery is less than the risk of death without it ...

history is always best understood by starting FURTHER back than the time of interest and moving foward to that time, NOT looking back from now.

, but since the patients, children mostly, were probably going to die anyway they carried on making newer and improved techniques
indeed ... I was one of those children (I was 10) in 1974, when the risks were still high but lower. As I've written here before, that's why my mother was scared shitless she'd lose her little boy.

she didn't, but I lost her (which is the natural way)
 

tom in MO

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Paleowoman;n886010 said:
Hi Tom - no valve manufacturer can wait thirty, forty, fifty years watching human guinea pig patients before they can fully assess the life of a new valve, but they can do tests which are done on all the previous valves, as in testing them on juvenile sheep, and say that the new valve lasts much longer than a previous type of valve. Just like any pharmaceutical company, Edwards have to state "No clinical data are available that evaluate the long-term impact of RESILIA tissue in [human] patients" because of the length of time. Of course no one can be sure how long a valve will last, whatever type of valve, but there will be advances in valve manufacturing and it would be a Luddite who ignores advances. Maybe one day they will also bring out a mechanical valve which doesn’t require the recipient needing anticoagulation therapy !
They have to state that no clinical data exists because it doesn't. There is plenty of clinical data on the durability of mechanical valves and the relative fragility of tissue valves for patients that are 35 yo. Why choose a valve that is supposed to last longer when there is no data in humans to support that claim? However given the proven track records of the existing valves, one has a number of choices that are known to work. I think anyone willing to try a new valve is braver than I :)

I generally try to stay out of which valve is best discussions, since I don't know enough to be an expert and I've made my choice. However, when I went to the Edwards Resilia website saw they present selective truth used for marketing, I felt the need to speak up. For example, they lead off with a graphic that shows tissue valves as the natural progression from mechanical valves instead of showing mechanical valves leading to a two track development giving better tissue valves and better mechanical ones.
 

Paleowoman

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I don’t enter this mechanical versus tissue valve debate because any valve is a good choice if a person’s valve needs replacing, but I will give information about a new valve that is an advance of the previous generation of valves when someone expresses the view that they find the choice difficult due to anticoagulant with mechanical or re-do because tissue has until now been relatively short-lived, especially in younger people. In the end people should take advice from their cardiologist or cardiac surgeon. Of course it’s easy to say cardiac surgeons are paid by the valve manufacturer to use their valves, but that works with all valves if true (and would be pretty unethical).. There will be advances in valves, both tissue and mechanical - information about those advances should be made available.
 

pellicle

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Firstly I want to make clear that the following is not advocating one over the other.

I am sure (based on witnessing many people in many contexts over many years) that most people are totally incapable of making a good analytical assessment of a washing machine. Few have any technical comprehension and most struggle with actually understanding how to operate their phone (let alone describe how it works). Further there is no qualification needed to find you need a AVR or MVR, so therefore its "a broad cross section of the community" (not just engineers, biochemists, researchers ...)

The general pattern is that late in life people discover they need an AVR/MVR and go into an emotionally driven tail spin to attempt to acquire as much information as they can. Usually they go deep into overloaded land.

From there they beguile themselves that they are making an informed decision, and attempt to believe that they can see well into a future, when its pretty obvious they are only looking up to the cliff of surgery ... thoughts of the actual realities of life after surgery (perhaps maismatically viewed as "going back to normal") are based on life continuing as it has.

Few ever think of how life will be for them in 10 years time (and I mean everyone). Few will acknowledge (to themselves) that they will have losses in function, losses in strength, losses in cognition (it may have already begun).

Thus all the "arguments" are not actually considered but "emoted"

With respect to the discussion on the valve in question I believe that what Tom has written above is about the only possible analytical approach that can be undertaken: NB an analysis of the motives and language of the marketing.

Its pretty clear to me (based on history) that the new tissue valves will be in no way inferior to their predecessors, that indeed they will likely be better. The key question being discussed here is: how much better.

This is (to me) not a discussion of the pros and cons of choice but a discussion of how "much is reasonable to believe has improved in durability?"

To me the answer can be found (or estimated) in the examination of the iterative changes in these types of prosthetic over the last 30 years. Such would indicate small step-wise increments, with the biggest advances already had in the huge changes which occured between the 1960's and the 1990's

I believe we are approaching a asymptote in development, and there will be no significant improvement in prosthetic valves until we get game changing new materials (not just different chemical treatments of leather).


Paleowoman;n886023 said:
I don’t enter this mechanical versus tissue valve debate because any valve is a good choice if a person’s valve needs replacing,

if people believed that then there would be no discussion ... but clearly people are highly emotionally invested in which "marketing mantra" to believe. Usually this is "confirmed" by "the faithful" who've "had their valve 5 years now" (or something like that). These people are often guided by a kind of religious hope, it is like going to an Apple Revival converence and expecting to hear good things about Android.

If there have been huge advances it is in the area of AC Therapy monitoring, and the electronic POC sytems which enable people to manage their AC therapy to be of incredibly low risk ... but this is not an argument over which valve is better BECAUSE there are selection reasons why a person should not consider AC Therapy.

Bottom line is still the same : if you're over 60 at first operation then then a Tissue Prosthetic will be a great choice, probably the best one. If you're under 40 you're setting your self up for a life of surgeries.
 

Dr_Bear

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Thanks all for your replies, this is my account here, i am the initiator.

The discussion about valve choice for me is not relevant. I am going for a mechanical valve at the moment. I am a doctor and i manage several hundred patients with atrial fibrilation (wich requiers anticoagulation) and, except a really stupid accident (a pacient took almost all his anti coagulation pills in a few days and turned all blue but nothing bad happend) most of them are ok. And this is done keeping a INR at 2-3. I heard that modern valves are requiring a smaller INR, around 2 ,wich limits accidents a lot.

My logic is this - if a tissue valve, or a valve repair lasts about 10-15 years, i might do about 2-3 operations until i die, if nothing bad like cancer or car crash happends to me. I will go for a mechanical valve and wait. If something really good comes along, some great artificial material that can last a lifetime but requires no AC therapy, i will do another AVR. If not, i preffer to stay with my forever lasting mechanical valve and the AC therapy.
I am not afraid of the life after AVR. I quite hate the waiting i am doing now and probably will hate a lot the weeks before intervention. That is my only scare. Life after will be....well....life after. The big step had been taken, i did all i could. I just want to do it late enough so i can maximize my life expectancy, not later so i can lower it.
My stats look decent for most cardiologists. Some say i shoud undergo AVR in the next year. Most say to wait and see. I was thinking that someone around had my situation and was curious about the moment their doctor actually told them - go do it.
 

epstns

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Hi, Chris,

Sorry I'm late to the party, but we were on holiday and I was off the net for a bit.

It sounds like you've got the anti-coagulation issue well under control. In fact, there are probably quite a few folks around here who would welcome you to stay around and help us to allay the fears of the new members facing a lifetime of anticoagulation. Pellicle and a few others have been holding down the fort. We used to have a few more really long-term experienced anticoagulation experts (one even ran an anticoagulation clinic), but they are no longer with us.

As for the timing of your future surgery, mine was simple. My cardio told me that patients with my diagnosis (moderate to severe aortic stenosis) pretty much never had to be told when to have surgery. They always told the doctor when it was time. I initially laughed, but ultimately that's how mine went, too. Once I had been in the "severe" category for a year or so, I just told the cardio "I'm tired of being tired." He then said "Let's pick some surgeons to meet with."

I was a good bit older than you when I had the surgery. I was 63 at the time, and had been a runner/jogger/gym rat for 30+ years at that time. I was in great shape for an "old guy" but I felt I was losing my exercise tolerance too quickly for it to be simply age-related. After the surgery, doc told me that I was right - my valve was ready to be replaced. I am now 71, and still go to the gym 5 days a week, so I'd say that the valve replacement gave me my life back.

Agreed - the waiting is the hardest. Just try to keep things in perspective. Develop your plan for dealing with the valve, then set the plan aside. Re-visit it every few years in case there are new advancements in the technology or in your condition. Adjust your plan accordingly. When you feel it is time to "pull the trigger" all the decisions will have been made and all you will have to do is to work your plan. You'll do fine, no matter what you choose to do.
 

pellicle

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Hi

Dr_Bear;n886079 said:
Thanks all for your replies, this is my account here, i am the initiator.
glad you dropped back :)

... And this is done keeping a INR at 2-3. I heard that modern valves are requiring a smaller INR, around 2 ,wich limits accidents a lot.
well its a bit of a two edged sword in my view. Here is my personal summary:
  1. the new On-X valve was the first to make the claim of handling a lower INR (see references in a tic) but with some highly specific caveats (read them carefully)
  2. there a is public (well mainly USA thing) hysteria that Warfarin is bad and an association that taking less of it will prevent all manner of things (we've discussed on this forum everything from feeling colder, bones, cholesterol, baldness, erectile dysfunction ...) with no actual clinical evidence (not a shred) that changing your dose in the margins required to keep a theraptutic INR window will do jack ****
  3. subsequent stuides (before PROACT even) suggested that INR was being set too high, and that ALL the mechanical bileaflet valves (St Jude, ATS, Carbomedics...) can allow on an INR range that's reduced. That's reduced from the high levels of the past ... meaning that the present guidelines (INR Target = 2.5 range = 2~3 for an Aortic, INR Target = 3 range = 2.5~3.5 for a Mitral) are quite good.
(*refs from point 1
https://www.ncbi.nlm.nih.gov/pubmed/24512654
https://clinicaltrials.gov/ct2/show/NCT00291525


I would refer you to the outcomes published in this study: http://jamanetwork.com/journals/jama...article/415179

[IMG2=JSON]{"data-align":"none","data-size":"full","src":"https:\/\/c2.staticflickr.com\/4\/3868\/14626794599_c646b1872d_b.jpg"}[/IMG2]

showing that for AVR patients thrombosis events were low till about 2 and bleed events required much higher INR than any good manager of their INR will see.


Best Wishes and Merry Christmas
 

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