Decision time.

[PAN]

Hi,

I had my first consult with my surgeon recently to discuss options. He surprised me with his suggestion.

I've been monitoring BAV for about 10 years now. Over those years it has been mostly insufficient but now increasingly stenotic. My ascending aorta is around 41mm depending on the day of the week it seems and my arch is also mildly dilated but under 40mm so it'll get a pass for now, so will the ascending it seems, unless its thin I guess. Though I get the feeling some centers might be more aggressive here. Aortic root is normal so his suggestion is haemodynamics may be underlying cause of dilation. Taking that with a very large pinch of salt. I was fully prepared to go mechanical and start with home monitoring as soon as possible. I'm in my early 40's btw.

He has suggested the Ross procedure and has cited better long terms outcomes as his primary reason. Quite the surprise as I had wrongly assumed it had continued to fall out of favour. So what to do ?

A re-operation is almost certain, though if my aorta is left I feel like we may be back there before long regardless?

So, turn one valve issue into 2? Commit to further surgery.. I've been going through the archives here again. Time to go deeper

I know there are lots of really long term mech valve owners here. Happily going about there business. Home monitoring would be a non issue for me. The experiences here led me to being comfortable with a mechanical decision. My head has been turned a little, just for now.

I've read so many threads here that I feel well informed but still, the return of the Ross is determined to confuse me for a few weeks

Either option will be better than my current valve that's for sure.

Trying to set up a second opinion as quickly as I can.

Thanks for listening

P

 

[MdaPA]

He has suggested the Ross procedure and has cited better long terms outcomes as his primary reason.

Did the surgeon provide what the LT outcomes were for going with the ROSS? My wife had a ROSS procedure (at age 31) which lasted 22 years until they were replaced (they were replaced during her OHS to primary replace her MV so they did a complete overhall then - i.e. the AV and PV valves replaced during the ROSS did not need immediate attention and could have gone a bit longer).

My ascending aorta is around 41mm depending on the day of the week it seems and my arch is also mildly dilated but under 40mm so it'll get a pass for now, so will the ascending it seems, unless its thin I guess. Though I get the feeling some centers might be more aggressive here.

Did you see this post?
What about the Aortic Size / Body Surface Calculation?

Do get several 2nd opinions. If you do find a surgeon that says now is the time to replace your ascending aorta at the same time as your AV then you could go with a mechanical AV and not face a 2nd surgery (or turn a one value issue into 2 with the ROSS).

Good luck.

 

[Superman]

MdaPA covered this very nicely. One valve issue for two potential valve issues. Not a fan.

Now if you can’t get approval to replace the ascending aorta, a pig or cow valve might actually make sense if you’re facing a second surgery regardless. Confines the issue to one valve. Buys you a few years warfarin free. If the aorta continues to balloon, you can rethink and go mechanical once that needs replacing.

Tough spot though. 4 cm just sucks. Too small to intervene, but you know where it’s heading. Just no idea when it’ll get there. I feel for you.

 

[nobog]

Maintain a reasonable blood pressure and go with the mechanical - you're to young for a tissue valve.

 

[LondonAndy]

I can't offer much help to you I'm afraid: I had a mechanical valve inserted 6 years ago, almost as am emergency thing, and did all my research AFTERWARDS! Now I find it interesting to read of the developments, but I read them without the worry of how they will affect me: my surgery is done, I am happy with how it went, and I do not expect to go through it again.

In many respects I think the time before surgery is the worst: decisions to make and worries about if things go wrong on the operating table, etc etc affect some people very much indeed. But your post suggests to me that you are looking at things rationally and thoroughly, so my impression is that you will make a good decision on the information available. I shall read with interest what others with more experience say in reply to your post.

 

[PAN]

Hi, Thank you all for your responses. It helps a lot.

Did the surgeon provide what the LT outcomes were for going with the ROSS?

He provided graphs from several papers displaying what I would describe as minimal improvement above long term mechanical valves. A lot of the data is similar to this Grand rounds session . I will look deeper into the data if I can fine it. The general feeling I get is that the improvements suggested are based on the superiority of the Ross rather than explaining the detail behind the lower numbers in the mechanical group. It's a bottomless pit of discussion I think.

https://www.ahajournals.org/doi/full/10.1161/CIRCOUTCOMES.118.004748

https://www.onlinejacc.org/content/72/22/2761

Did you see this post?
What about the Aortic Size / Body Surface Calculation?

I had not but I will have a look again later and do the calculation. Why not. Thank you.

Do get several 2nd opinions.

I absolutely will. If I can get my latest CT/Echo Images I should be able to get several more opinions.

Maintain a reasonable blood pressure and go with the mechanical - you're to young for a tissue valve.

This is still the likely road for me. I'm other wise healthy and would have no problem tracking INR. I'm assuming it is likely that my aorta will continue to grow even though it has not moved much in ten years. Will be interesting to see for sure. So potential reop for aorta. Likely reop for failing Ross in a number of years..

Thanks again for your comments, I'll try drop this today and get back to it in a day or two. Some trick

 

[PAN]

Looking deeper into my own situation I wonder how fast the aorta would continue to grow. Impossible to tell but fun to ponder

My root is normal and valve cusps are Right and non coronary fused. Pointing to ascending type aortopathy. Literature seems to suggest a greater influence from blood flow on the condition of the aorta in this case. Maybe it will and maybe it won't.

I wonder if anyone in a similar situation has halted aorta growth once a replacement valve of any type with improved haemodynamics has been implanted.

If anyone has stumbled upon such data please share

Thanks again,

P

 

[spartangator]

Looking deeper into my own situation I wonder how fast the aorta would continue to grow. Impossible to tell but fun to ponder

Differing definition of fun, I'll contend

As others have mentioned, the time before surgery is the hardest in some ways. Fortunately, as you'll often see discussed on here, the best bit is that we have multiple options--and they all work!

It's amazing we can be here and discuss (thank you for the above data, by the way) and make choices with the odds profoundly in our favour.

 

[MdaPA]

I wonder if anyone in a similar situation has halted aorta growth once a replacement valve of any type with improved haemodynamics has been implanted.

If anyone has stumbled upon such data please share

See below from Cleveland Clinic:

"Even after aortic valve replacement (AVR), the aorta continues to grow faster than normal. Something about the aortic wall itself appears to make patients with BAV vulnerable to dilatation. "

Bicuspid Aortic Valve with Aneurysm - Cleveland Clinic

 

[Superman]

I wonder if anyone in a similar situation has halted aorta growth once a replacement valve of any type with improved haemodynamics has been implanted.

If anyone has stumbled upon such data please share

Thanks again,

P

I had my valve replaced in 1990 with a mechanical valve. In 2006, my aortic root was less than 3 cm. By 2008 it was 3.6 and by 2009 it went to 4.9. I had it replaced. Neither I nor my cardiologist nor the surgeon were comfortable watching given the rate of change. Had surgery in October 2009 for the graft.

 

[dick0236]

My aortic valve was replaced in 1967 at age 31. No mention was made of an aneurysm as my docs believed my stenosis was due to Scarlet Fever that I had as a child. About 10-15 years ago my Cardios suggested that my earlier diagnosis was probably wrong and they thought I had had a bicuspid valve......but, still, no aneurysm was mentioned. My aortic aneurysm was first
identified exactly two years ago at 5.8 cm so I am not sure when my aneurysm first developed or how fast it grew to 5.8 cm. Because of my age (mid-80s), the complexity of the surgery, and the aneurysm was giving me no trouble I chose not to undergo surgery to repair that aneurysm. Had I have been 15, or so, years younger I probably would have had that aneurysm repair surgery along with a brand new valve........but at my age and a currently working valve I believe "if it ain't broke don't fix it".

 

[pellicle]

Lots of good data and discussion.

I would say that you should look carefully at what surgeon skill levels are required and what are the difference in outcomes between surgeons. I would suggest that high specialised experience is needed for good outcomes.

Myself I got 20 years from a homograft, which is unusual today, because of the team.

Having BAV gives you a predisposition to aneurysm.

So, while I had a homograft at 28, that lasted till I was 48, and while an aneurysm was the actual driver for the (then third) surgery, the valve was about stuffed too.

My view is that compared to 1992, warfarin self care is as advanced as diabetic self care (which you may be stunned as to how far that's gone), and so the issues of warfarin in lifestyle are insignificant compared to the mythology of the 1970's

For instance, I'm now 56, and about to have a small surgery on my foot (arthritis), the surgeon is totally comfortable with my handling of anticoagulation (discussed here Perioperative Management of INR)

So most of the reasons to avoid a mechanical are historical.

Best Wishes

 

[PAN]

Thank you all again. I did obsess about it a little over the weekend and I'm still leaning towards the mechanical right now. Though I still await a 2nd and 3rd opinion and will make the final decision in a number of weeks I would imagine.

Differing definition of fun, I'll contend

Yeah that's true You have to laugh though..

I would say that you should look carefully at what surgeon skill levels are required

I will consider this very carefully. Right now all I know is that this is a really high volume center. They do a lot of the more advanced root and valve sparing work so I'm confident that the skills are there. The major negative against them is that this is a relaunch of their Ross program so the number for that particular procedure may be too low for me to accept. Though components of the Ross are definitely routine there.

Having BAV gives you a predisposition to aneurysm.

True enough, I was just curious if anyone with Type B , ascending and arch aortopathy had noticed a slow down in there dilation progression post new valve. Will be interesting to monitor and I won't be surprised if it just keeps growing. So be it

My view is that compared to 1992

Yourself and many others here have dispelled pretty much any concern I have for using warfarin day to day. So no worries on that front. At all..

I'll try set up the new consultations as quickly as possible and go from there. Thanks for listening.

P

 

[PAN]

That's a great picture. I shall spread that one around

Very sorry to hear about your wife. I can't imagine how you dealt with that.

A crap shoot it certainly is. Perspective comes around every now and again. We/I should try to hold onto it.

I foresee and few more annoying weeks, followed by your prediction

All the best,

P

 

[tom in MO]

I've noted there is a theory put around here that OHS somehow sures up the artery with scar tissue, so I'll point out that my third OHS was driven on the discovery of a 5.3cm aneurysm on my aorta right around where the other 2 surgeries were ... so don't hold your breath I say.

I think you're got the right attitude here and seem to be well aware its a craps shoot. Life is a series of random events, and its best to be clear that no amount of prayers will stop you from what will happen (no matter what you believe in). For instance nobody would have forseen that my fit strong healthy wife (younger than me) would have dropped dead from a brain tumor 6 months after my OHS while everyone (in her family) was expecting her to be widowed when I died on the table on my 3rd OHS (or maybe soon after).

I foresee you'll do well ;-)

Prayer is multidimensional and appears to be something you do not comprehend. However, just because you do not understand or believe does not mean you should belittle it.

My son-in-law just passed and in the 5 months since he was given a diagnosis of cancer, he was baptized, had his first communion, his first confession, confirmation, the sacrament of marriage, anointing of the sick, last rights and a funeral. All the sacraments between 4/13 and 9/20. All at age 25. His life and death was enhanced by prayer.

Most religions teach that we are here on earth to suffer and die, prayer helps one handle the suffering. Everyone, even Jesus, dies.

 

[pellicle]

Prayer is multidimensional and appears to be something you do not comprehend.

I just knew you'd pop in on this. You always believe you understand me and you're always wrong. Its fascinating.

Prayer is multidimensional and indeed should be (as I've said here many times before) aimed at strengthening yourself, not begging for something. I have posted this here many times:

Prayer should be about self actualisation and inner strength not "please let this happen the way I want"

There does that clarify things in your mind, but probably it wont, because your actual goal is to just contradict me where you can, not to actually engage in any discussion.

So if you ACTUALLY read what that cartoon was and actually read its meaning you'll see there was nothing in there to suggest ALL prayer was meaningless ... just begging from God is meaningless because IF one truly in ones core believes (which I doubt in most prayer seekers) that God knows and God is wise then you'd be actually happy with whatever God arranged.

But most are not (especially those seeking intercessional prayers like kids at the supermarket asking mum for that thing).

 

[tom in MO]

You always believe you understand me I don't believe I understand anybody not even myself.

Your cartoon does not state what you pretend it does. The cartoon specifically says that per Jesus, prayer is worthless.

 

[pellicle]

Your cartoon does not state what you pretend it does. The cartoon specifically says that per Jesus, prayer is worthless.

if you say so ...