Ross Procedure

[PAN]

Hi,


Following on from the later posts here: my time has come will start a thread dedicated to Ross discussion. Well another one. As mentioned before, both viable options in my opinion but now to choose.

Having known I'd need a valve replacement for over ten years the time is certainly close now. I was scheduled for surgery in late 2021 but for several reasons pushed it back. Previously my cardiologist had only ever discussed mechanical valves for me at age 43. Plus an ascending aorta replacement, a one and done via mech valve was on the table. First surgical consult and the Ross was put forward as an option. Primary reason, as stated, improved long term outcomes. Survival rates matched to general population. That is the claim and having researched this in some detail it seems to be the general consensus that this is likely a real a benefit of the procedure rather than a benefit derived from having a surgery at a center of excellence by a top end surgeon, having been specifically selected as suitable for this procedure. Selection is an interesting point, in my case other wise healthy , previously quite athletic, not so much for nearly 2 years or so now but suspect the likelihood of doing well with a mechanical valve is quite high also. Creature of habit and engineer so ACT management should prove no problem.

Back to the Ross, a living valve placed with particular care by a select number of surgeons in patients that have been specially selected. Apparently the autograft will alter over time and adjust so that at a cellular level it becomes more like an aortic tricuspid valve. All well and good once the root maintains it's diameter. Yet solid data to support long term results is hard to come by if non existent.. Beyond 20 years or even 15 it is not possible to make any comment with real confidence. In reality who knows what happens in 15 to 20 years anyway, one thing I do know, if you get 15 to 20 years from a Mech, chances are you'll just keep on ticking, that's my feeling, looking at the valve issue in isolation.

Pulmonary donor valve also to be considered. Suggested that at 15 to 20 years maybe 25% will need to be replaced. Some have lasted longer, this guy always amazes me ( ) 24 years and still going. Luck of the draw no doubt

Interesting at the end of this presentation the audience are asked what procedure they would opt for, most of these doctors opt for the Ross.

I've been reading about all of the options for some time now. A comment in this video was quite interesting to me, well a couple. The claim is that even with well managed ACT survival is lower in mechanical valve groups. Also an interesting comment about neurological decline due to small clots being produced. If ACT is managed correctly this should not be a problem and the 1000's of patients living long term with mechanical valves are testament to that, however i found his comment interesting.

The Ross registry in Germany/Holland also suggests benefits of a Ross Update on the German Ross Registry - Sievers- Annals of Cardiothoracic Surgery

A couple of papers included also, the numbers involved tend to be small but there are many such papers. I I recall one study combined several to bring the numbers towards 20K.. I may dig that one up if I can.

I best stop there for now. Happy new year !

P

 

[pekster11]

Interesting stuff PAN

the paper below also seems to suggest even younger adults who have mechanical AVR have sub-optimal long term survival rates compared to the general population, whereas those undergoing the Ross procedure have comparable rates to the general population.

However, it does mention that those mechanical AVR patients who self monitor their INR have survival rates in line with the general population.

I've included some of the more important points:

"The current study highlights that AVR for isolated aortic valve disease remains a palliative solution. This is also in concordance with several studies examining long-term outcomes after different aortic valve substitutes in young adults. Using the Hancock II bioprosthesis (Medtronic Inc, Minneapolis, Minn), David and colleagues reported 55% survival at 20 years in patients less than 60 years of age (and 30% freedom from reoperation). Similarly, using the On-X mechanical prosthesis (On-X Life Technologies, Austin, Tex), Chambers and colleagues reported a linearized rate of mortality of 2.2% per patient-year in a population of 214 isolated AVRs. These findings are in contrast with a series of recently published studies showing restoration of survival after the Ross procedure in young adults."

"Although this may be due in part to patient selection, it could be related to the suboptimal profile of mechanical prostheses, both at rest and with exercise. In young adults who are physically active, this exposes the left ventricle to persistent strain, potential fibrosis, and decreased coronary flow reserve"

" Data from Mokhles and colleagues suggest that survival of young adults undergoing mechanical AVR with self-managed anticoagulation closely resembles that of the general population at a mean follow-up of 6.3 years. No valve-related deaths were reported in that series "

"Late survival in young low-risk adults (<65 years) undergoing elective isolated mechanical AVR is lower than expected in an age- and gender-matched general population. In most cases, the excess mortality is cardiac or valve related, confirming that the choice of prosthesis in these patients can have major clinical implications. Furthermore, there is a low but constant hazard of prosthetic valve dysfunction requiring reintervention after mechanical AVR."

https://www.jtcvs.org/article/S0022-5223(13)01295-6/pdf

 

[pellicle]

Hi

as this thread has no obvious linkage to other readers I thought I'd quote this here for "uniformity" when being read by other users.

Hi PAN,
I am 42 and was in the same boat you're in. I required aortic valve replacement and repair of my ascending aorta. I saw a local surgeon who had a ton of experience with AVR and aortic repair. He recommended the mechanical valve, stating that it was a "one and done". I got an opinion with the Cleveland Clinic, who recommended the Ross. The advantage being that the Ross does not require lifelong anticoagulation. I too came across some of the studies that suggested a shorter lifespan in patients with mechanical valves, and it made me dig deeper and do a lot of thought and research on the decision. I got a third opinion from Yale, who agreed with the Ross, citing the same things.

The bottom line was that I agree with my cardiologist, who said "There is not a wrong answer". The Ross procedure is more complex, involves two valves, and carries a SLIGHTLY increased mortality rate relative to a mechanical valve replacement. However, lifelong warfarin is not needed.
The mechanical valve requires lifelong warfarin. However, it should last a lifetime. Having an aneurysm repaired at the same time further decreases the chance of any further open heart surgeries in the future.
I'm not saying my assessment is correct, but what I found was that the cardiothoracic surgery world is entrenched into two camps on this: The pro-mechanical valve surgeons will tell you it's "one and done" and that the Ross creates a "two valve issue", and that complications with it can be very challenging to fix.
The pro-Ross surgeons will tell you that you won't need warfarin, and that if one of the valves require re-intervention in the future that it can be done minimally invasively (ie a TAVR approach). They will also cite the survival rates.
I was leaning towards the mechanical valve but was concerned about the survival data. Thanks in large part to this forum, along with my own analysis, I decided that there were way too many variables to make any definitive conclusions. The studies on decreased survival typically cite complications from the warfarin, both bleeding and thromboembolic events. Most of that data is older. Do we know what other comorbidities the patients had, and how well they regulated their INR? Have we factored in the impact of home testing?
Unfortunately there will be no guarantees. Even with the Ross, there is no guarantee that a future intervention could be done without having to open things up again. And at my age, it was pretty much a guarantee that one of the valves would go should I live to my 70s and beyond.
In the end I went with the mechanical valve, and had it done on November 10th of this year.
I think it comes down to personal preference and knowing yourself. I'm anxious, type A, and neurotic about most things in my life. I had little doubt that I'd be diligent with tracking my INR and managing my warfarin. In fact I bought a home kit before my surgery even happened, so that I had it in place when I got home. I am still in the early stages of managing it and have gotten a lot of help from the folks on this forum. I knew I did not want to have another open heart surgery if I could avoid it, and that I'd be worrying all the time about the status of my repaired valves should I go with the Ross.
Now that I'm on the other side of it, having dealt with some small bumps in the road post-surgically, I'm currently content with my decision. The additional variables the Ross brought would have caused my anxious self to worry about even more bumps or complications.
This is all assuming the Ross is done by a highly experienced surgeon who is well-versed in the Ross, working at a center that is well-experienced in it. Things can go terribly wrong with it in inexperienced hands, and having to re-operate on a Ross that goes wrong is very difficult.

So I guess to summarize...do you want a more established, "simpler" (I use that term very lightly of course) surgery that hopefully will not require reintervention in the future, but subjects you to lifelong warfarin management (which potentially carries a survival risk, but I think that's very debatable)....or do you want a slightly more involved surgery that will allow you to avoid lifelong warfarin, but will likely require re-intervention on a valve later in life, which could be done minimally invasively but is not a guarantee?
Again, I don't think there's a wrong answer.

There are others on this forum that are much more well-read on things than I am and have great resources, so that's just my two cents. I wish you all the best!

P.S.- If you don't mind, I'd love to see the papers you're referencing as well

 

[pellicle]

24 years and still going. Luck of the draw no doubt

while I don't believe in luck, I know that there are always statistical outliers. Someone in the casino WILL likely win on green at roulette on occasion, but the house always wins every day (due to diversity).

Looking at the very well handled homograft data from the institution that did mine there are indeed many cases of homograft getting far more duration than is commonly accepted in the USA. Data like this will probably never be had again not least because there are more institutions in my State doing OHS now, back then there was one.

The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements.​

​

Freedom from reoperation from all causes was 50% at 20 years and was independent of valve preservation.​

​

Freedom from reoperation for structural deterioration was very patient age-dependent. For all cryopreserved valves, at 15 years, the freedom was​

⦁ 47% (0-20-year-old patients at operation),​

⦁ 85% (21-40 years),​

⦁ 81% (41-60 years) and​

⦁ 94% (>60 years). Root replacement versus subcoronary implantation reduced the technical causes for reoperation and re-replacement (p = 0.0098).​

My underline above, but 94% of older people done with a homograft at my hospital were reoperation free after 15 years. You can probably assume that many of those did not ever require a reoperation. I base this on that I was one of the 21-40 years group, and my valve was still functioning (although leaking and calcifying) at 20 years. My surgery was driven by an aneurysm.

Superman (also a younger patient) was reoperated due to aneurysm too. Indeed if you are having surgery due to BAV then really you need to factor that in. Because it would be annoying to have your pulmonary valve sitting in your aortic position pulled out and have to pick between mech or tissue. It would be even more annoying to develop AFib and need warfarin too (which happens and you should be very wiley at looking into that stat).

Do your calculations and by calculations I mean statistical ones.

Then answer me this question: why is it so much of a big deal to avoid warfarin? Because you've been led to believe something (hopefully factual not anecdotal) or are you genuinely contra indicated.

Best wishes

 

[ETC908]

Thanks for sharing this info. It's a very difficult decision, and as I've shared earlier, the survival aspect worried me (and still does) and gave me pause. I can pick and choose so many things to swing me toward one side or another. This line in the second paper you shared stands out:
"Only anticoagulation self-management and optimal anticoagulation monitoring in patients with mechanical valves seems to result in similar good survival compared with Ross patients at least during 7 years postoperatively"
As pellicle can attest, I'm probably checking my INR TOO much right now. While this will increase my neurosis and likely not give me a good sense of overall stability, the point is that I was, and still am, confident that I will be attentive to my INR and be able to identify when I'm in a danger area. Right now I'm checking more frequently because I'm assessing different variables, learning my body's response to warfarin, etc. But long term I hope to be like the other experienced folks on here who are on a stable dose, and check it regularly enough to identify issues, but not too frequently to make it a burden.
I highlight this because I agree with pellicle's take...why is warfarin such a big deal?
If we agree that diligent management of one's warfarin/INR results in similar long-term survival as the general population/Ross (and I know that it's not definitively clear), then I think it comes down to the tradeoffs I mentioned in my earlier post. If you're really not convinced that diligent management normalizes one's long-term survival, then I guess I'd lean towards the Ross if you trust the survival data.

 

[pellicle]

As pellicle can attest, I'm probably checking my INR TOO much right now.

(*snigger) ... perhaps, but knowledge is power and you aren't over reacting so that's ideal.

If you're really not convinced that diligent management normalizes one's long-term survival

or if you really don't think you can actually be diligent ... some people can't and can't learn to be. So for some people putting their health management in someone else's hands is the best way. For me however I believe only I am sufficiently motivated to do that.

Best Wishes

 

[PAN]

Thanks for sharing this info.

More than welcome and thank you for taking the time to send such detailed considered responses. In this thread and in Peksters. To be honest if I went mechanical I'd probably follow your method. Over sample in the beginning and then reduce to weekly with confidence. So yourself and Pellicle have asked, why is Warfarin a big deal ? For me, I do not think it would be. Something to adapt to. Well documented at this stage and would not be a problem. However mech ownership is more than just the drug that accompanies it. And sure who knows, maybe as we age we inevitably end up taking warfarin anyway.. Eventually i think it needs to be reduced to just a few parameters for comparison. My preference has always been to avoid repeat surgeries. So automatically the Ross should be out. However, a medical professional who has dedicated his life to this subject is convinced this is the superior option. So now for one or two more opinions. ETC908 previously mentioned surgeons having their preferences set in stone. Well this surgeon, is pushing the launch of a Ross program for the last few years. So no surprises there..

Will send a more coherent reply later, end of holidays champagne Enjoy the rest of the weekend and thanks again for all your input.

P

 

[pellicle]

Will send a more coherent reply later, end of holidays champagne

I'm just replying here to say it doesn't matter about your reply and to caution you into saying things which you're not sure of. I have found that making a statement often results in your conscious mind taking that statement and following it. So be sure about yourself when making statements (dunno if that was clear).

Secondly, life is short, drink good champagne ;-)

PS: if you do go mech, and you want a "leg up" on managing INR PM me when the time comes. I'll show you the ropes as I know them and you can go from there. My simple method has typically seen me >95% in range

 

[PAN]

statement often results in your conscious mind taking that statement and following it

I know exactly what you mean and thank you for pointing it out. I'm quite a "robotic" person at times, so I have been told, so will thread carefully. I've good family with some medical background to help me through it also. So let's see, ultimately it'll be A or B by a nose... Hilarious... All the best

P

 

[PAN]

I'll show you the ropes as I know them and you can go from there. My simple method has typically seen me >95% in range

Much appreciated.. not the first time you have made the offer either. If that time comes I'd no doubt send some files fore review How many apprentices have you got on the books these days ? It's a great thing you're doing..

Another opinion lined up later this month, let's go from there.

P

 

[pellicle]

How many apprentices have you got on the books these days ? It's a great thing you're doing..

right now about two active and one 90% fully self managing, one "interested in the method" old hand, the rest are self managing or have dropped off (probably because they're self managing). Since day one I've worked with about 40 people. I recommend you start with my method and then adapt it, rather than mung up something and then have "existing habits" which may be difficult to change.

What I like is how quick it happens and then they're good to go it alone.

 

[PAN]

Since day one I've worked with about 40 people.

That's brilliant, must be extremely satisfying. Shall keep it mind for sure..

 

[PAN]

Quite a long read for anybody interested..

For me, I've 1 pro Ross and 1 Pro Mech surgeon. A tie break consultation followed by a decision very soon I hope. Still a highly irritating decision but as we like to say. better than the valve I have right now, one way or another..

https://www.hindawi.com/journals/bmri/2021/5547342/

 

[pellicle]

Still a highly irritating decision but as we like to say. better than the valve I have right now, one way or another

well as I like to say in such situations: flip a coin and if you find that you don't like the "call" then that tells you something.

PS: just reading through that link (interesting review) and the amount of caveats and "only iffs" for success seems high, its like asking for 3 or 4 heads (or tails) in a row. If you win all the tosses then great, meanwhile the mech is pretty well understood with really no unknown or "it depends" selection criteria for inclusion in their study.

I also won't be buying an EV any time soon either (although I do have 2 electric scooters)

Lastly I don't recall your age and its not in the bio and I believe it makes a significant difference.

 

[pellicle]

I forgot to ask about this point

However mech ownership is more than just the drug that accompanies it.

so what else is it then? That it never needs changing? Concerns about ticking?

 

[PAN]

Yeah without a doubt the ifs buts and maybes are ever present in many medical write ups.

Well a mech valve may need to be changed as you well know. I was never overly concerned by the ticking but beyond the meds as stated above, it does tick, which might be a problem? Maybe I'm lucky and barely hear it. I doubt Id have a problem but until youre there you never know. Higher risk of infection? Potential to throw micro emboli, heard that mentioned in a talk. Can't remember when. Possibly contributing to cognitive decline? Maybe that was his point. Possibly less detrimental than the Belgian beer on the go tonight

Any how, where's my coin?

 

[pellicle]

Well a mech valve may need to be changed as you well know.

actually I don't well know that ... what I do know well is that if you don't have anything else drive a reoperation such as aneurysm, (which would also drive a reoperation on a Ross) you will not see a mechanical valve fail and need to be changed.

What do you consider would cause a reoperation other than an aneurysm?

1) Obstructive thrombosis (driven by long term mismanagement of INR) is in the main treated non-surgically now with the PICC administration of tPA

2) Panus (if you suffer from that) may also cause obstruction to the bioprosthesis as I understand it. However its rare and:

It usually proliferates on the ventricular side of aortic prostheses and is associated with certain risk factors such as operative technique, characteristics of the prosthesis, size of valves in patients with a small valve ring, young age, female sex, pregnancy, low cardiac output, turbulent flow, infection, inadequate anticoagulation​

(citation)

Both those last two are very unlikely.

 

[cooperman]

@PAN
Just wanted to weigh in with my personal experience. I had a Ross procedure at age 21 and it lasted me well for 20+ years. My life was normal in all respects save for the scar on my chest and yearly echocardiograms. At the 20 year mark the aortic valve began to leak and the pulmonary homograph had stenosis. I recently had an On-X valve put in to replace the aortic valve and another homograph for the pulmonary valve. The idea is that the mechanical valve will last me forever and the homograph can probably be addressed via cather in 20+ years if all goes well. (Hopefully, that is the case.)

I am very grateful to have had all of my younger years free of medications and worries about anticoagulant reactions. I was able to travel the world and be very active. I was fortunate that everything went well and gave me those benefits, as not all patients have that experience. I do feel that I could have gotten more time out of my valves than I did. Perhaps much more time. I have always done training with weights, but at around 17 years in I began to lift very heavy weights. (Mid life crisis maybe?) For instance, I would bench press 150% of my body weight, straining incredibly to do so, and even experiencing chest pain on one or two occasions. I assumed it was musculoskeletal, not heart related. It was shortly after this foray into power lifting that my valves began to deteriorate.

My advice to someone considering the Ross vs mechanical route is to think seriously about what lifestyle you have and want to maintain. If you are very active and are an avid skier or mountain biker or lumberjack or whatever (name the activity) and anticoagulants are going to limit you, that is something to take into consideration. Are you are a homebody or do you travel to exotic third world countries where an accident or disaster could be fatal because of a bleeding event while in an isolated area? In such a place there could be a disaster and you might not be able to get medication and lose what you had on hand.
If your lifestyle is stable and you have a desk job or non-risky occupation and you don't plan on any risky trips or activities, the mechanical valve seems like it would be a good option. One and done. My experience with INR management has been easy and straight forward. I home test and go to the lab once a month. I have only been out of range once in 1.5 years. Not that big of a deal.

Resurgery after the Ross procedure is also something to consider. At age 41, if you were to get 20-25 years out of it, that would put you in your 60's. Depending on what is needed, you could be looking at a full sternectomy and both valves being replaced or a transcatheter procedure for one or both valves. My thought process on that is to plan for the worst case scenario and hope for the best. In other words, plan to be opened up again. Do the benefits gained in your lifestyle outweigh the second surgery? For me they did, but I have lived a more adventurous life than many.

Whatever you decide, don't second guess and look back. There are no guarantees that either procedure will go perfectly or last for 20+ years. Things happen. I commend you for looking at the facts and statistics while making the choice instead of relying on merely rumors or sentiment. That's the best anyone can do.

 

[Chuck C]

My thought process on that is to plan for the worst case scenario and hope for the best. In other words, plan to be opened up again.

Whatever you decide, don't second guess and look back.

Words of wisdom!

 

[pellicle]

I commend you for looking at the facts and statistics while making the choice instead of relying on merely rumors or sentiment. That's the best anyone can do.

hear hear

My experience with INR management has been easy and straight forward. I home test and go to the lab once a month. I have only been out of range once in 1.5 years. Not that big of a deal.

I can add that I'm out of range about once per year ... so in my 10 years of self management that would sit me more like this outcome



(mainly to Pan here) I don't consider this unusual as an outcome and would suggest similar for any of us who manage.

I don't have a desk job and in my 'retirement' am doing a lot of building and cutting and bashing myself (inevitably). Eg I did this (and more) largely by my self
http://cjeastwd.blogspot.com/2022/01/two-sheds.html
as well as this sort of thing quite often

http://cjeastwd.blogspot.com/2021/12/down-to-mt-alford.html

@PAN I wish you an event free and unremarkable recovery.

Best Wishes