Pondering, Would like input...

[Magic8Ball]

Here is a scenario i'm pondering at this point in time, i'm not even sure if the procedure for it exists as i don't see my cardio until Thursday.

I have a bicuspid valve which has caused a dilated ascending aorta and i need the aorta fixed, now they have suggested bentals to also replace the valve at the same time with a mechanical device but this is more along the lines of 'while we are in we may as well do it'.

However, before the CT the cardio said everything was fine and he would see me in 5 years time so obviously the valve itself is working well within the parameters of replacement or they would have asked to see me in 1 or 2 years. I also feel great.

With all the valve enhancements and developments going on i'm half considering just having the aorta fixed and keeping my dodgy valve for as long as it works and then having the valve replaced later on.

Now how later on depends on my own valve but as it is my own it could last a lifetime or it could pack in quicker. But even looking at the mechanical option they are listed at 25-30 years so i even think i could be looking at a swap out again? not sure.

Obviously this would give me more time off medication but put me at the risk of re-surgery but just how much risk would it be as i think either way i would only be looking at two surgeries. If the advancements i'm hoping for didn't arrive in the next 10-15 i'd go mechanical then...

I like the idea of the one stop operation and i've read the threads about people on coudamin not really having an issue with it, more people like me contemplating life on it.

If this procedure was a valid option and i was lucky enough for my own valve to last say 15-20 years i'd hope i'd have more options on replacement by then, perhaps as some of us are dreaming now my own valve grown from my own dna and then replaced.

Does this sound like a valid train of thought or does it just sound like my brain going on the fritz after reading too much information over the past week.

Again, your thoughts are appreciated.

 

[Karlynn]

I'd have Plan A and Plan B (replacing valve) in place, if it were me. You make a good argument. If my foggy memory serves me, there's a member now who had the aorta done a few years ago and is not facing a valve replacement sooner than they thought. But I may be getting that story mixed up.

I think your best bet is getting a surgeon who is very experienced, setting up plans A and B and then letting the surgeon decide one he/she gets in there, which one is the better plan.

Best wishes.

 

[MrP]

A composite mechanical valve with Dacron graft represents a single operation and may indeed last your lifetime. A redo operation is guaranteed if your aneurysm is resected and your BAV is not replaced. Having been in your situation almost 3 years ago, I can't imagine not having both taken care of at the same time.....there's no way I'd want to live each day knowing that I am facing another surgery again. Also in my case, my BAV limited my ability to run distances. Now I run over 2 miles daily and am in better physical shape than before surgery, although the clicking is hard to get used to and still is a pain sometimes. Another consideration is the post-op depression that hits you after OHS...and knowing another surgery is looming would be tough to deal with in this respect..in my opinion.

 

[OldManEmu]

David procedure

David procedure

Magic8 ball I posted this on one of your other threads yesterday I have reposted it here in case you missed it.

With any of these procedures there are no guarantees. However with a David procedure if you are evaluated properly, it should only be done if the surgeon thinks it will last at least as long as a tissue valve. This can usually only be determined once they are in there, so it is important to have a plan B if the David can't be performed. The valve can also be cleaned up at the same time. Because you keep your own valve there is no need for ACT and also native valve endocarditis if you are unlucky enough to get it is easier to treat than prosthetic valve endocarditis. Your BAV may actually last your entire lifetime despite us having a lot of members with a BAV, given that 2% of the population are owners of a BAV most never have a problem with it.

I have attached a copy of a photo of a STJude valve with the preattached aortic graft, if you hadn't seen one before.

 

[Marguerite53]

Those are really tough questions. Hearing the responses so far, and knowing that my own valve went downhill rather quickly once it decided to go, my gut would say to get it all done at once now. BUT. If there was a way to get a truly very good "picture" of where your valve is now (is it stenotic or leaking, by the way?), or if they truly can "clean it up", I can totally understand why you might want to wait to do the valve. They can and do indeed last a lifetime, sometimes, but of course the gamble is, is yours one of those or one of ours? How hard has the valve had to work lately?

Not all of us get the post-op depression. I've had none. Not many of us have lingering sternum pain....I do. Not all of us had truly miserable pre-op symptoms which lasted years. But, some did. Not all of us had purely dreadful surgery experiences...some did, I did not. Recovery does take a chunk out of your life. You kind of have to honor it. Your body is definitly being taken to the task.

Really, really dig in deeply in discussion with your cardio and surgeon. Ask them what they would do if your concerns were their concerns. Ask what they would do for their wife, or mother! Surgeons have seen the messes inside, cardios have watched their patients progress pre and post surgery. They are probably, truly, your best guides.

Keep us posted! good luck in your thinking!

Marguerite

 

[Mike C]

I think it is a solid plan that should be investigated. You should have a backup plan and find a surgeon who has done lots of them.

I had the same plan, surgeon got in and didnt like my valve, so replaced it with a st jude as we had discussed.

just becasue bicuspid, doenst mean it needs replacement.

i think it is improtant to eliminate or minimize reops though so i would make sure surgeon is comfortable with you native valve lasting a long, long time.

my observation i dont like is reveresed, bicuspid valves being replaced with aorta being rleft alone and then people going back at a later date

 

[Kate]

Hi Magic8Ball,
My understanding is that valve-sparing aortic surgery is becoming more common and, as mentioned above, is a realistic option if your cardiologist thinks you can get at least 10 more years from your native valve. But, if you decide to go this route, it is especially important to choose your surgeon carefully. You really want someone, for both the first procedure and the reop, who specializes in this surgery, does them all the time and has good numbers. Risks just go up with reoperations so, if you're going to choose a plan that involves them, you want to give yourself the best possible odds. Take care, Kate

 

[Lynlw]

If you want to do that, i would definately suggest talking to an adult chd surgeon, if possible, Lyn

 

[aussigal]

Hi Majic,
I see you have been busy doing some thinking...
I had the same thoughts with a dodgy Aorta and an OK valve.
My BAV was leaking and was calcified in a few places. It was definately going to be needing replacing but we couldnt tell when. Eventually we all agreed on doing the Bentalls with the hope of avoiding further surgery...well that plan worked 'til about 20 minutes after my surgery til I had the Arrests and ended up back in surgery...
Dont know where you read about lifespan of mechanical valves but most here will say that they are designed to outlive us. According to the manufacturer they could last 50yrs or more.
Surgeon John is an excellent choice and he even goes to the USA to speak at their seminars etc..

 

[PJmomrunner]

Hi Magic:

I too have pondered this scenario. It seems like a good plan to me IF, as others have said, your surgeon has done a lot of these and you are deemed a good candidate for whom it is likely to be at least a ten-year fix. I can't help but wonder if we could just leave my not-so-terribly-leaky valve alone and just switch out my messed up aorta. To do so would not, by any stretch, guarantee no subsequent operations, but that would be a possibility and if they do reoperate, they would be doing so on the native valve, so I would think the risks of complications, at least relative to scar tissue, would be less.

Dr. Cosgrove of the Cleveland Clinic has done a lot of work in this realm and has published recently.

 

[Magic8Ball]

Data Dump Update

Data Dump Update

Removed, starting a new thread.

 

[Meghan]

Hi Magic,

Just saw your post - I would say that your thoughts are certaintly not *on the fritz* - my husband and I have beend debating the same issues and trying to weigh the risks. My husband has a dilated aorta and bicuspid valve; the dilation was found when his cardiologist heard the valve leaking. There's debate about whether or not the dilation could be what's causing the BAV leakage and if that is corrected the valve will function as it had been. We are waiting on some surgical opinions as there's no consensus among the 3 surgeons we've consulted - one wants to replace the valve in a straight up bentall procedure, one wants to leave it alone and just replace the aortic section, and the third hasn't offered an opinion yet (asked for another test, which we provided, but hasn't gotten back an actual opinion on what he would do)

The last thing his cardiologist said was that they could plan the surgery to open him up, see what kind of shape the valve is in, if it looks good to replace the aortic section and see if the valve functions well after the section is replaced. If not, replace the valve while he's still open. Potentially a longer surgery, but it also may let him keep his valve that has functioned well for 26 years.

Meghan