First surgery, bicuspid aortic valve replacement

[Hollyn]

This is my first post on this site, just discovered it a few days ago. I am a 65 year old woman and I found out I have bicuspid aortic stenosis in Sept. of 2016. At that time my cardiologist wanted to do surgery right away. So I went to UW Madison (Wisconsin) cardiologist for a second opinion. She did a stress echo and after reviewing everything was told I was not in need of immediate surgery and was scheduled for 6 month recheck. She said I am moderate borderline severe. My score was a 31 (which is an average I am told)?? At the time my symptoms were fairly non existent with the exception of extreme fatigue. Well, my recheck is next month and am have symptoms of heart pain, some shortness of breath and the fatigue. I am also meeting with my surgeon after my Echo and I'm assuming we will talk about valves. This is all new to me and I am leaning towards a tissue valve simply because of the Warfarin with a mechanical. I need some intelligent questions to ask and appreciate you thoughts and opinions. Thank you.

 

[ashadds]

By 31 do you mean gradient ? What are your echo values

 

[Nocturne]

Others here will give advice about mechanical vs prosthetic, etc. Pellicle knows his stuff and he will tell you that Warfarin isn't a big deal (I think he's mostly right, but it's a little more complex than that if you happen to have coronary artery disease or, at least, a godawful CAC score).

For my part, I can offer you some good news. From what I've read (and I've read quite a bit on the subject), people who have AVR done after the age of 65 can expect to live a normal lifespan afterwards -- it does not impact their relative survival rate. I can show you some studies that reveal this to be the case if you'd like -- or you can just take my word for it. But assuming you are in relatively good health otherwise, you just may be in the "sweet spot" where you are young enough that the surgery itself will not carry much risk (and it shouldn't), but old enough that AVR will not really impact your lifespan.

Cheers!

 

[Paleowoman]

Welcome to the forum ! I had my bicuspid aortic valve replaced just over three years ago when I was 60. I chose a tissue valve because a) I didn't want the ticking noise of the mechanical (I have very acute hearing and am sensitive to sound) and b) I didn't want to be on warfarin. My surgeon chose the Carpentier Edwards Magna Ease pericardial aortic valve which is made from bovine pericardial tissue. i believe that there is now another newer valve made by Carpentier Edwards. I didn't have any symptoms prior to surgery, none at all, I was very fit and healthy. I'm not sure if you mean your "score" is your pressure gradient and whether that is mean or peak - my peak gradient on referral for surgery was 68 mmHg and the mean gradient was 38 mmHg.
PS There are other variables which a cardiologist or cardiac surgeon will use to indicate the time for surgery.

 

[pellicle]

Hey

... Pellicle knows his stuff and he will tell you that Warfarin isn't a big deal (I think he's mostly right, but it's a little more complex than that if you happen to have coronary artery disease or, at least, a godawful CAC score).

Thanks for the honourable mention

Both points are correct
For the majority it's not a problem
For some few with specific issues that select against it it may be.

Nothing is universal but there are good reasons why for most it's not a problem.

The devil is always in the details

 

[pellicle]

Hi

. I am a 65 year old woman and I found out I have bicuspid aortic stenosis in Sept. of 2016. At that time my cardiologist wanted to do surgery right away. So I... we will talk about valves. This is all new to me and I am leaning towards a tissue valve simply because of the Warfarin with a mechanical. I need some intelligent questions to ask and appreciate you thoughts and opinions. Thank you.

well for starters I'd say that at your age there is no compelling reason to pick one valve over another. So I support your leaning.

At 65 (without knowing anything more about you or your activity levels) I'd venture that a tissue valve would be the simplest choice in terms of management.

Why?

• it simplifies life to (most likely) not need warfarin (which is to prevent clots formed by the valve). Its not 100% by any means that post surgery with a tissue type valve you will not need warfarin, but that's the most likely outcome (that you won't need it)
• tissue valves have a limited life but you are most likely to get the longest life from the valve as you are older, so its entirely likely you'll get between 15 and 20 years from the valve.
• at your age (meaning not 30 anymore) if you need eventual reoperation then a TAVI will probably help as right now they are good for about 5 years and while they reduce your valve internal diameter (restricting blood fllow) that's probably not going to be a big factor at the age you'll be in 15 - 20 years from now

As I see it the prime reason to pick a mechanical valve is that one is under 50 years old and one wishes to avoid redo surgery. Also a patient under 50 will probably cause the tissue valve to calcify faster reducing the life of the valve.

You are not in that situation.

There is a small case to be made for a mechanical at your age but again that would need greater information about you and your lifestyle.

Among the non-mechanical valves there is perhaps a good case to be made for a homograft or autograft (same thing, known by different names). This may give you a better chance of avoiding a redo operation at your age but again its not a certainty (nothing is) and you'll need to go to a hospital that specialises in them to get your best bet on making the most from a homograft.

My advice is take the points I've raised along on a piece of paper and discuss these with your Dr's at your next appointment. I hope you've found some good points and that others will continue to raise some more.

Lastly don't worry, its all going to be fine and I'm sure that like the millions of others of us you'll have your new bit of plumbing put in and you'll return to enjoying physical health.

Best Wishes

 

[Hollyn]

Thank you all for responding so quickly. I'm afraid I'm very uninformed and just learning about all the terminology. As far as my "score" it was based on the echo I had during my stress test. I didn't get any other numbers (or if I did I don't remember). I am in good health otherwise, other than high cholesterol which is controlled with a statin. Unfortunately I am rather sedentary and I know that isn't good. Funny how one always thinks they've got plenty of time to change habits. Lesson learned! I am concerned about the noise with a mechanical and will definitely be asking that question. I have tinnitus and don't need any more noises! I so appreciate all the feedback.

 

[Hollyn]

Am I understanding correctly that doctors use only their particular brands of valves and that if I want another brand I have to find another doctor? So daunting, I had no idea. I chose UWhealth in Madison because it has the highest ratings in my state. I live in a very rural area in northern Wisconsin.

 

[pellicle]

Hi

I am concerned about the noise with a mechanical and will definitely be asking that question. I have tinnitus and don't need any more noises! I so appreciate all the feedback.

That's the least of your worries ... trust me.

I have tinnitus from being an audio guy in bands for a while and so before and after valve surgery there has been ZERO influence from that.

If anything my tinnitus is exacerbated by being in an utterly quiet room. Out in the forest which has breeze in the trees I hear the ringing less.


We all start out knowing nothing, it's a journey.

Read my points again as they are most of the big ticket items

 

[Paleowoman]

Am I understanding correctly that doctors use only their particular brands of valves and that if I want another brand I have to find another doctor? So daunting, I had no idea.

Cardiac surgeons will go for the type of valve you want, ie mechanical or tissue, usually no problem. But then the surgeon would normally chose the make of either mechanical or tissue that he/she is familiar with. There's no way you'd want a surgeon to implant a valve they were not familiar with ? During surgery they have several valves of different sizes available, maybe even different makes, I don't know. What size they use they can only know when they open up the area. I didn't find out the make my surgeon used until after surgery, but I wasn't familiar with the differnet makes anyway except as I'd read from fellow AVRers on this forum. I was really pleased with the surgeon's choice, but I certainly could never have chosen for her ! Talk it over with your surgeon if he/she is amenable to telling you about the various makes of valve and why he/she choses one over another - would be interesting to find out !

 

[Hollyn]

I would imagine my surgeon will give me his recommendation on valve type and I will just have to go from there. Pellicle, your info is extremely helpful. Paleowoman, I was wondering how they determined the valve size. Makes sense. Btw, I tried viewing your video posted in Heart Talk but wouldn't load. Maybe it's been taken down? Nocturne, your info is very heartening. You all are so knowledgeable.

 

[honeybunny]

Welcome Holly! Most all of us came to this site stunned by the same diagnosis and with the same questions as you. I went with a tissue valve at 61 in September 2015 for the same reasons cited by Paleowoman. In fact, Anne and I exchanged private messages, and her information helped me feel comfortable with my decision. I wasn't completely opposed to being on warfarin but preferred not to have to manage the medication. I was also concerned about the ticking of a mechanical. I don't like to hear someone's heart beating, including my own in an echo. I expect one more surgery if I outlive my valve but am not counting on TAVR to be available for me. If it is, great. If not, I'm prepared for another OHS.

The folks on this site are giving and helpful. They calmed my fears and celebrated my making it to the other side. I know you will be supported as you travel this journey. Keep us posted.

Hugs,
Michele

 

[Hollyn]

Thank you for your words of encouragement and for sharing your story. I am putting future TAVR possibilities for me on my questions list. My cardiologist I saw the first time seemed to think that by the time 10 years or so rolls around that TAVR would be more available to a larger segment of people. Nice to talk with people who have been where I am now and made it to the other side.

 

[Paleowoman]

Paleowoman, I was wondering how they determined the valve size..

When they get in there and are at the place where the aortic valve is, the annulus I think it's called, they size it with an insturment they have, that's how they know. They can put in a slightly larger size valve, but I'm afraid I don't know how they decide on whether or not to do that.

 

[Paleowoman]

Re the TAVR - currently the "valve in valve" option is only for those whose replacement valves are above a certain size, currently it's only suitable for valves of 23mm or greater.

 

[jwinter]

Hello and welcome to the group, Hollyn.

Many people here and many stories. I had my first AVR at age 56(tissue valve-Las Vegas) and just had second at age 60(mechanical-Mayo Clinic). Lots of other details but will suffice to say that you should listen to the doctors in charge of your care and make your decision accordingly.

I was disappointed that my first surgery did not last and had to have surgery so soon. I had a few bumps after mechanical but it has worked out well for me.. I could hear the valve to begin with(found it comforting) but barely hear it now. Also, I have had no real symptoms through it all except shortness of breath so it is a good idea to listen to your body and become very aware.

I had my ON-X mechanical valve put in at Mayo Clinic in Rochester and have to tell you I was very happy with their care and my family thought they were the best there is.


Only going around once.......listen to doc and make the decision that feel right for YOU. Take care and let us know how it goes.

 

[dick0236]

At your age you seem to be a candidate for a "tissue valve"......but only your cardio, surgeon and you understand the "risk/reward" in your situation. Do your homework so you can talk candidly with your docs. Ask the really important questions.....What are the odds of needing another surgery after 80 ( even if TAVR is available then, how will they deal with the old failed tissue valve)? What are the odds of being placed on ACT for other reasons (afib)?

 

[ashadds]

Others here will give advice about mechanical vs prosthetic, etc. Pellicle knows his stuff and he will tell you that Warfarin isn't a big deal (I think he's mostly right, but it's a little more complex than that if you happen to have coronary artery disease or, at least, a godawful CAC score).

For my part, I can offer you some good news. From what I've read (and I've read quite a bit on the subject), people who have AVR done after the age of 65 can expect to live a normal lifespan afterwards -- it does not impact their relative survival rate. I can show you some studies that reveal this to be the case if you'd like -- or you can just take my word for it. But assuming you are in relatively good health otherwise, you just may be in the "sweet spot" where you are young enough that the surgery itself will not carry much risk (and it shouldn't), but old enough that AVR will not really impact your lifespan.

Cheers!

dick0236 is the biggest counter example to your statistics.... AVR age 31 ... It is not a certainity that you die early with AVR < 40 years ....all those statistics have been accumulated in the past...if you are healthy with little to no co morbidity ...there is a fair chance to reach atleast 70 years ....if by normal lifespan you mean 85 then certainly not even many members of the general population reach 85 .... after AVR you have more risks endocarditis , pannus , thrombosis , bleeding events and even sudden death (which happens with CAD ) , CAD is also a co morbidity so is diabetes....people who have co morbidities and poor health pre AVR fare worse ...

I wouldnt bet on those statistics . I am a young guy 26 and I can assure you my goal is to beat those statistics . I have done significant research myself and many studies guarentee atleast a 87 % life expectancy after 10 years with a mechanical valve and 70 % statistic at 20 years. These studies were done in early 2000 and 1990s so they only tend to become better with modern medicine .

 

[pellicle]

Hi

I wouldnt bet on those statistics . I am a young guy 26 and I can assure you my goal is to beat those

That's the spirit :-D

Get old and grumpy like me and come here to encourage the young ;-)

 

[cldlhd]

When you say 87% life expectancy at 10 years and 70% at 20 do you mean 70 % still alive at 20 years? I would think that stat would mean a lot more to me depending on the age of surgery.