Difficulty choosing the right valve for me.

[Arne]

Hi,

I just joined this forum recently since I'm about to get heart surgery in the coming months. I still need to pick a date and choose the valve/procedure.

I have a bicuspid valve that was stenotic from birth and it started to regurgitate after I had a balloon valvuloplasty at the age of 12. Now at 30, I have developed an aneurysm (4.7cm) in the ascending aorta, an enlarged left ventricle, and the valve is obviously not getting any better.

Basically, it's time to do something about the valve and the ascending aorta.

I have been told I could do the Ross procedure. My pulmonary valve is a bit leaky but that I was told it could be fixed when they it is put in the aortic position. My worry about this surgery is that it is more complicated and that they also need to fix my ascending aorta while in there. The gamble with the Ross seems to be that if all goes well, it outperforms both the tissue valve and mechanical valve in quality of life.

My worry about getting a tissue valve is that it'll have to be replaced a lot sooner that I would like. If I do pick a tissue valve, it'll probably be the St Judes Trifecta.

My worry about the mechanical valve is the fact that I'll have to take Warfarin. I'm afraid I might have an adverse affect to it, that it'll be difficult to maintain my INR levels, or that I'll be dependent on a drug for the rest of my life. If I do pick a mechanical valve, it'll probably be the On-X valve with ascending aorta graft.

Did any of you go through this back and forth when trying to figure out which valve would suit you best? And if so, how did you finally decide? Did your surgeon, cardiologist, family convince you of one option over another?

Your advice is greatly appreciated.

Arne

 

[Ryan CA]

Hey Arne,

I had the exact same condition until a week and a half ago. Aortic Stenosis since birth and a recently developed aneurysm. I was a little unsure about which valve, tissue or mechanical, for a very short time. After doing some research, it was very clear to me that mechanical was the way to go...and my surgeon agreed. I received a 25mm On-X with an ascending aorta graft on June 20th.

Warfarin therapy thus far has been a piece of cake and if you do a few searches on this site, you will see that many people who have been on it for many years have had no difficulty.

I will be mountain biking and hiking so I plan on getting my money's worth out of this valve. I know a tissue valve would not be likely to hold up to the abuse I will put it through over the next ten years, so for me, once I learned a little about the pro and cons, a mechanical valve was a no brainer.

Good luck,
Ryan

 

[dick0236]

My worry about the mechanical valve is the fact that I'll have to take Warfarin. I'm afraid I might have an adverse affect to it, that it'll be difficult to maintain my INR levels, or that I'll be dependent on a drug for the rest of my life. If I do pick a mechanical valve, it'll probably be the On-X valve with ascending aorta graft.

When I got my valve at 31, the only choice was mechanical....so I didn't have to go thru this "choosing dilema" that patients now go thru. With the benefit of hindsight, I would make the mechanical choice today, if I had to go thru it again as a young man. My valve and the need for an anti-coag med(warfarin) has not interfered with my life or lifestyle.....and I've been in an operating room only that one time.

 

[pellicle]

Hi

The gamble with the Ross seems to be that if all goes well, it outperforms both the tissue valve and mechanical valve in quality of life.

only if you count being on AC therapy any sort of major impediment. At 30 you'll be unlikely to get more than 15 years from a tissue valve, and perhaps only a bit more than that out of a Ross. So does your quality of life calculation / index make a mandatory repeat surgery at 50-something a worthwhile trade off? My view is that its kicking the can down the road. Further, its not a certainty that by going tissue or Ross will mean you are without AC therapy anyway. Certainly its reduced odds.

I can assure you that if I had an option to go back in time and get a mechanical done on my operation at 28 given the technology that existed today I'd be there in a flash. Stuff like surgical infections definitely impinge on your quality of life. So don't be misled into thinking its just that simple set of data.

Also Ross in general makes me shudder. Spoiling a perfectly good valve for replacing one which is dodgy seems to be something that only a surgeon would dream up (one that enjoys operating more than anything else in the world). The procedure takes longer and all indications are that less time on the pump is better for you with respect to noted cognitive declines. Ross also demands a higher surgical competency, meaning less margin for error, personally I think there is enough going on in the OR at the time to justify KISS principle.

IFF Ross was permanent (and its not in younger people) then perhaps it may be more beneficial.

Naturally only you can make your decision, but as you asked that's my view.

 

[joanpieroni]

Hi Arne, If I had any question on what type of valve living where you do I would look into going to Buffalo NY to the Gates Vascular Institute for a consult. They have the best surgeons anywhere around. It's not that far and I would think you would agree you are worth the time to look into it. The Hospital is AMAZING. I had Aortic Stenosis from a bicuspid valve done in March. I feel great and just went back to work this week.

 

[yotphix]

Hi Arne, If I had any question on what type of valve living where you do I would look into going to Buffalo NY to the Gates Vascular Institute for a consult.

That's if Arne has a money tree in his backyard! Assuming he is a legal resident of Ontario, he'll likely be having his surgery at one of two excellent facilities right in his own city, since the cost to him (besides the 'health care premium' portion of his modest provincial taxes) will be precisely zero dollars and zero cents.
May I ask Arne, where you are planning to have the surgery, and who is performing it?
I'll offer my two cents that in my own experience, warfarin has been no big deal. I had my replacement 5 years ago, when I was 39 and since then I've been in dozens of countries, traveled thousands of miles at sea, flown on dozens of airliners, run 3-5 days a week, bicycled, swum in oceans, climbed trees, been tattooed gotten married (three times on three continents, but all to the same lovely woman), had a kid (well, my wife took care of most of that), and worked long hard hours doing special effects and building props for film and television.
I've bled plenty, but never dangerously. I have a quiet tick, like a timex watch, that tells me I'm alive any time I'm in a quiet room, and a foot long scar on my chest. Otherwise, I don't think I would even remember that I had a valve replacement. Warfarin is a minor inconvenience one each day, and a finger stick once every week or two.
I wouldn't fear that if I were you!
If you want to talk to someone local about your upcoming 'journey', I'd be happy to make the time for you. I'll PM you my phone number so you have the option if you want it.
Either way, best of luck. Any choice that takes you forward is a good choice.
Paul K

 

[epstns]

I will be mountain biking and hiking so I plan on getting my money's worth out of this valve. I know a tissue valve would not be likely to hold up to the abuse I will put it through over the next ten years, so for me, once I learned a little about the pro and cons, a mechanical valve was a no brainer.

Ryan - It isn't what you do that causes a tissue valve to deteriorate more quickly in a younger patient. It is what your body does to the valve. The immune systems of younger patients are much more active, and this is what researchers feel causes the life of tissue valves to be shorter in younger patients. In other words, the tissue valves do not "wear out" from activity -- they are damaged by the body's own immune system.

I agree that for you, you have made the correct choice, but maybe not for the reason you cited. Since tissue valves have shorter lives in younger patients, most younger patients who opt for tissue valves are accepting the likelihood that they will have at least one more op, if not more, and have accepted the risks that go with that. I would agree that the risk of complications from anticoagulation are probably less than those of multiple repeat surgeries. Most surgeons feel the same way, hence their tendency to recommend mechanical valves for younger patients.

For "older" guys like myself (63 at implant), tissue valves may make more sense - but not everyone feels this way.

Either way, remember that you (all of you who have had VR surgery) have made the correct decisions for yourselves. You have chosen life, rather than the alternative of doing nothing and dealing with the decline and likely consequences.

 

[Arne]

Thank you all for the great responses.

Ryan, how's the ticking sound of the On-X valve? Recovery has been going well so far?

Dick, your story is really inspiring. I've seen many of your posts on this site. It's good to have people like you with a lot of years of experience on here. 1 surgery since 1967, I don't think a Ross or Tissue patient could say that.

Pellicle, I definitely went through some similar thoughts about the Ross. I think it's wishful thinking that it will work out perfectly. Even now considering that my pulmonary valve is leaking, I can't imagine that valve working out in the long-term. Many people are saying that ACT is not all that bad. Maybe it is blown out of proportion. Considering you had different types of valves and you are now recommending Mechanical, I think that's saying a lot.

Joan, I don't think I will be going to Buffalo for this, I don't have that money tree yotphix is talking about.

Yotphix, I got your pm. Thanks I will get back to you soon.

Epstns, how is your valve doing? I am considering a pericardial valve, but as everyone points out it might not be the best option for young patients.

 

[Heart Of The Sunrise]

I began thinking tissue, due to fear of Coumadin. But, the more I learned the more it was clear that mechanical was the way to go. I rarely hear any ticking.
Coumadin has not been a problem. It was my decision , no advice from doctors pro or con for either choice.

 

[pellicle]

Hi

Thank you all for the great responses.

hey, that's why we all gather here ... but you're welcome


Ryan, how's the ticking sound of the On-X valve? Recovery has been going well so far?

Pellicle, .... Many people are saying that ACT is not all that bad. Maybe it is blown out of proportion.

its not and you most likely are blowing everything out of proportion (including what may be a good straw to clutch to), but that's the nature of the business when you're stressed.

Just keep in mind that all choices are about odds (like a kind of bet). Its just that some odds offer a different mix of pros and cons, but all will save your life. The point is to understand the odds before making the bet.

When it comes to understanding the issues consider that there is more to the mix of issues than redo being more complex VS being on AC therapy, there is also further exposure to hospital acquired infections from that. For instance.

next think about where those are:

{sorry about the huge piechart, tried resizing it with tags but couldn't}

Keep in mind that we are now losing the "war" on bacteria as more and more are becoming resistant to anti-biotic drugs. There is heaps written on that subject and its been well known since back when I did my microbiology degree in the 80's

So less operations are better if you ask me (and yes I'm still fighting an infection from my last surgery in 2011).

 

[Ryan CA]

Arne,

The ticking is pretty loud. Definitely more so than I expected. It was a little irritating initially, but now I only really notice it when I'm in a quiet environment. I had a follow up with my surgeon yesterday and they said it may get a little quieter but not much. Recovery is going very well, thanks for asking.

Ryan

 

[dcmccarthy]

Arne

I had surgery for the same conditions you have only 8 weeks ago. I had mine done at the Ottawa Heart Institute, is this where you will be going?

I am 37 and never for a minute considered a mechanical valve. I am not the type for taking medications at any regular interval and I wanted to live the next 15 years (with any luck) carefree and just as I did before my valve replacement. I got a CE Perimount Magna Ease valve. This is the valve my surgeon chose, and from the research I've done on valves am glad he did. If I had to do it all over again today it would be tissue all the way. Pre surgery I was slightly concerned that I might end up with a Bentall and thus a mechanical valve.

-d

 

[Arne]

Pellicle, what do you mean you are still fighting an infection since 2011? Is it endocarditis?

dcmccarthy, I will be doing mine at TGH. How's your tissue valve treating you so far? Do you have a murmur with it?

 

[Arne]

Ryan, I know most people say it's either loud or that they don't hear it. But can you try to contextualize it for me? Is it louder than a watch ticking? Can others hear it when in a normal setting or do they really have to focus in on it?

I worry that after having a mechanical valve, everyone will always ask what is making that noise? It's hard for me to wrap my head around the loudness part of this valve.

 

[dcmccarthy]

So far my valve is perfect and I have no murmur. Saw my cardiologist at about 7 weeks post op and he said it sounds like a normal heart.

 

[pellicle]

Hi

Pellicle, what do you mean you are still fighting an infection since 2011? Is it endocarditis?

no, it wasn't endocarditis, that resolves itself much faster as I understand. I had an infection of propionibacter in my chest, it is unclear if it started in the sternal wires or under the sternum, but my personal bet is that it started at the sternal wires and was then transferred beneath the sternum as a part of the first surgical debridement operation.

you can find the details on a thread on this site here.

Propioni is actually a relatively common infection in operations where prosthetics (hips, knees) or metal plates are inserted. Its common that it takes months to years to present. It is not resistant to most antibiotics but despite this proves notoriously difficult to treat. I believe that part of this problem lays in the treatment methods (have journal articles on that topic).

I have my next appointment with my infection control specialist next month and I have been on antibiotics since the dates in that post.

 

[pellicle]

Hi

Ryan, I know most people say it's either loud or that they don't hear it. But can you try to contextualize it for me? Is it louder than a watch ticking? Can others hear it when in a normal setting or do they really have to focus in on it?

not attempting to speak for Ryan, but in my case I mostly don't "hear it" (although in quiet rooms others do) but I perceive it as a soft thumping which emanates inside. I hear it conducted through my head in probably the same manner that you hear something if you place your head and ear flat onto a table.

In a very quiet small room like a toilet in my apartment I can hear a "bass note" type sound reflect off the walls.

Its not disconcerting (well I imagine one could become anxious about if and make it disconcerting if one chose) and I'm totally unaware of it when doing things (such as changing the stereo our in the car yesterday with a new one) or exersizing (such as X-country skiing or cycling).

 

[T in YVR]

in my case I mostly don't "hear it" (although in quiet rooms others do) but I perceive it as a soft thumping which emanates inside. I hear it conducted through my head in probably the same manner that you hear something if you place your head and ear flat onto a table.

This pretty much sums it up for me as well. The valve noise I hear is primarily the one that is conducted through my head, given that the aorta is so large and relatively close to your ears. I suspect the noise of the valve also reverberates off your bones/rib cage. I do notice that sometimes it feels/sounds more like a thumping; other times it more of the ticking like a watch. To others, its not really very audible unless the room is small and quiet, or they are extremely close to me. I find that my valve noise also varies depending on whether I am standing or sitting in an upright position, lying down, whether my arms are above my head or not, etc. I can make the valve more or less noticeable depending on my position. I'm sure many people here have found this to be the case! When lying in bed at night, listening to the ticking, you tend to move around/experiment to see what makes it seem louder or softer. Overall, the noise is not bad at all (and I have a large 25mm on-x).

Re: the OP, I would not hesitate in still going mechanical if I could do it all over again. My doctors gave their opinions (mechanical) but at no time were they telling me which way I had to go. It was my decision once I had all the facts. I flip flopped a bit at first, but became comfortable with the warfarin etc. I was focused on being "one and done" - no re-op. And it has not been bad at all with the warfarin - sometimes I still fall out of range which happens (I hit 1.6 recently after a bad flu/antibiotics), but I monitored it and got it back up easily enough. Its only been 9.5 months for me so far since surgery, and from my experience I've learned it can (but not always) take some time to really get locked in to your dosage/INR. But home INR testing has also made this a breeze to manage. I would not worry about warfarin unless your lifestyle creates complications with it (like contact sports etc)

Tony

 

[Patsman07]

Also Ross in general makes me shudder. Spoiling a perfectly good valve for replacing one which is dodgy seems to be something that only a surgeon would dream up (one that enjoys operating more than anything else in the world). The procedure takes longer and all indications are that less time on the pump is better for you with respect to noted cognitive declines. Ross also demands a higher surgical competency, meaning less margin for error, personally I think there is enough going on in the OR at the time to justify KISS principle.

IFF Ross was permanent (and its not in younger people) then perhaps it may be more beneficial.

Naturally only you can make your decision, but as you asked that's my view.

I agree that the ross is probably not a good option fot the op as he has a leaky pulmonary valve. However I believe pecille is not giving the ross a fair trial here..
1. The Ross lasts 20 years plus in 80% of cases, only 10% less than mech valves.
2. The single biggest reason for failure in the Ross was dilation of the autograph root, new wrapping techniques will hopefully solve this problem and the 80% figure will rise in the future as a result.
3. Rates of failure in the pulmonary homograft are rare.
4. Ross has the potential to provide a life long solution, free of warfarin.

 

[pellicle]

Hi

...I believe pecille is not giving the ross a fair trial here..

well, that's quite likely, I did however say what it seems to me to be like. This is just my opinion, I could be totally wrong.

1. The Ross lasts 20 years plus in 80% of cases, only 10% less than mech valves.

this is a bit confusing, what do you mean that it lasts only 10% less?

Also, be careful that you do not confuse the longevity in elderly patients with younger patients. It makes a big difference how old you are when you have it. My homograft lasted me 20 years, but had I been 5 years younger when I got it the stats are that it would not have lasted as long.

Much of this is patient dependent and so projecting performance and durability with tissue valves is fraught.

I respect that each has their own opinions and I will not tell anyone about their choice or choices. Please do not confuse my willingness to argue the data with how I feel about any persons choice or their reasons.



PS: Firstly I'm not an expert (who here *is*) ... but from this study

http://circ.ahajournals.org/content/123/1/31.long
Survival Comparison of the Ross Procedure and Mechanical Valve Replacement With Optimal Self-Management Anticoagulation Therapy
Propensity-Matched Cohort Study

Two hundred fifty-three patients with a mechanical valve (mean follow-up, 6.3 years)
could be propensity matched to a Ross patient (mean follow-up, 5.1 years).

so, short follow up times ...

Conclusions - In comparable patients, there is no late survival difference in the first postoperative decade between the Ross procedure and mechanical aortic valve implantation with optimal anticoagulation self-management

So, 10 years and all good. My view is that were we to look at follow up of 30 years I am sure you'll find it quite hard to find the people in the Ross group, but you will find people in the Mechanical group.

Perhaps some people here will not be considering life in 30 years time, but as a 30year old I sure would.