Hi, my name is Tom, new member obviously. I was diagnosed with a bicuspid valve in my early 20's, now 54, and the stenosis has now gotten to the point of severe. I was originally going to get a mechanical valve but I just cannot accept the fact of being on blood thinners the rest of my life. So last week I talked to a Ross procedure surgeon who said that I was a good candidate for it. I had a heart cath and I don't have any blockages which is awesome. I'm mostly asymptomatic, a little lighthead sometimes and I do get short of breath walking uphill sometimes. It's kind of hard to accept the fact that you have to have open heart surgery when you really don't feel that bad. But I think that you just get so used to how you feel over the years that you don't realize how much you've slowed down. Hopefully I'll feel better after the surgery and I hope the Ross turns out well. Any insights into the Ross procedure if anyone has had it done? Thanks
New here, getting Ross procedure
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Superman
Well-known member
Hello and welcome to the forums!
Perhaps you’ve been reading here for a while? I suspect if you took a poll around here about the Ross procedure, views would generally be less than favorable (although there are fans). You take one bad valve and put the patient in the position that both the aortic and pulmonary valves will potentially need to be replaced down the road.
The pulmonary valve isn’t made for the aortic pressures and won’t last as long as it does in the pulmonary position. Then you put a tissue valve in the pulmonary position, and they don’t last forever either. Ross was a good idea, but I think that was back when they maybe didn’t consider that there would be a meaningful difference in durability between native aortic and native pulmonary valves.
If I wanted to avoid ACT (anti-coagulation therapy), I would get the best tissue valve on the market and put it in the aortic position. When that wears out, hope for the possibility of a TAVR but mentally prepare for another replacement.
As far as ACT, it’s really all I know. I’m not yet 50 and have been taking warfarin for almost 32 years. I can answer questions about that as well.
Perhaps you’ve been reading here for a while? I suspect if you took a poll around here about the Ross procedure, views would generally be less than favorable (although there are fans). You take one bad valve and put the patient in the position that both the aortic and pulmonary valves will potentially need to be replaced down the road.
The pulmonary valve isn’t made for the aortic pressures and won’t last as long as it does in the pulmonary position. Then you put a tissue valve in the pulmonary position, and they don’t last forever either. Ross was a good idea, but I think that was back when they maybe didn’t consider that there would be a meaningful difference in durability between native aortic and native pulmonary valves.
If I wanted to avoid ACT (anti-coagulation therapy), I would get the best tissue valve on the market and put it in the aortic position. When that wears out, hope for the possibility of a TAVR but mentally prepare for another replacement.
As far as ACT, it’s really all I know. I’m not yet 50 and have been taking warfarin for almost 32 years. I can answer questions about that as well.
70sdiver
Well-known member
I'm on anti-coagulants right now was suppose to be for 90 days but was extended to the first of the year. pretty easy to manage I can still drink a few beers all in all it's not that bad. That being said I would really research the ross procedure. Lots of early failures from what I've researched . I am 66 and just had aortic vale replacement, you are right you don't even notice over time how bad you are feeling . Man It's nice to breath again lol. You'll feel very strange the day you check in for the surgery I was like man I don't feel that bad should I let them do this. I'm very glad I did. I would make a decision soon don't let your heart get damaged waiting to long.
Yeah it's a tough decision to make, there just isn't a great option for this intervention, period. I've done a TON of research on this and it looks to me like if the Ross is done by an experienced surgeon the outcome nowadays is pretty good. That said, I also feel like the surgeons are selling the procedure and themselves because they want to do more of them to learn. I know that this may sound stupid and morbid, but I think that I would rather be dead than have to have a mechanical valve and be on blood thinners.
Both of the surgeons I talked to said that they are strongly against tissue valves because of the durability. I know that it is ultimately my decision, and initially a tissue valve is what I wanted to go with.
From my understanding, the pulmonary valve will adapt to the pressures in the aortic position over time. And I guess hopefully I would be able to get tavr for either one in the future. I'm just going with what I think is the best decision for me.
Thank you for responding.
Both of the surgeons I talked to said that they are strongly against tissue valves because of the durability. I know that it is ultimately my decision, and initially a tissue valve is what I wanted to go with.
From my understanding, the pulmonary valve will adapt to the pressures in the aortic position over time. And I guess hopefully I would be able to get tavr for either one in the future. I'm just going with what I think is the best decision for me.
Thank you for responding.
Hi Thomas,
you may want to consider the Ozaki procedure. It is basically making a new valve from your heart pericardium.
This is something that has been developed in Japan, but is now also available in Europe and the US. It is an alternative to the ross procedure in the sense that they are still using your tissue to make your valve, but they do not transform your one valve into a two valve problem.
As with all new techniques though, there is only a decade or so follow up in Japan thus far.
There is a Japanese surgeon that performs this technique at the Cleveland Clinic in the US.
https://tgkdc.dergisi.org/text.php?id=3303
Quoting from this article:
The mean age of the patients was 67.7±14.9 years. The etiology was aortic stenosis in 61.7%, aortic insufficiency in 31.1%, and both in 7.2% of the patients. The mean aortic cross-clamp and cardiopulmonary bypass times were 106.1±30.3 and 151.3±36.9, respectively. The overall survival rate is 84.6% and freedom from reoperation is 95.8% at 12 years.
you may want to consider the Ozaki procedure. It is basically making a new valve from your heart pericardium.
This is something that has been developed in Japan, but is now also available in Europe and the US. It is an alternative to the ross procedure in the sense that they are still using your tissue to make your valve, but they do not transform your one valve into a two valve problem.
As with all new techniques though, there is only a decade or so follow up in Japan thus far.
There is a Japanese surgeon that performs this technique at the Cleveland Clinic in the US.
https://tgkdc.dergisi.org/text.php?id=3303
Quoting from this article:
The mean age of the patients was 67.7±14.9 years. The etiology was aortic stenosis in 61.7%, aortic insufficiency in 31.1%, and both in 7.2% of the patients. The mean aortic cross-clamp and cardiopulmonary bypass times were 106.1±30.3 and 151.3±36.9, respectively. The overall survival rate is 84.6% and freedom from reoperation is 95.8% at 12 years.
Hi Thomas,
you say: And I guess hopefully I would be able to get tavr for either one in the future. I think that you may want to ask your prospective surgeon about this (if you havent already). From the literature it seems that transcather replacement of their valve after Ross is either not possible or risky,
As you probably know, Dr. Paul Stelzer is one of leading Ross proponents in the US. His recent article says: "Importantly, stenosis of the autograft has never yet been seen which makes valve-in-valve catheter-based therapy impossible for the failed autograft with current technology." Outcomes of reoperations after Ross procedure - Stelzer- Annals of Cardiothoracic Surgery
Dr. Peter Skillington's article (he is a leading Ross proponent in Australia) suggests that Transcather Pulmonary valve replacement carries a high risk of endocarditis. His article says "Furthermore, the risk of IE with the Melody valve may be significant. A recent systematic review of 9 studies including 851 patients showed a wide range of the incidence rate of IE—from 1.3% to 9.1% per patient-year." - See DEFINE_ME
You should be aware that the perceived survival benefits of the Ross could just be due to Patient selection. An international study shows much lower survival of the Ross procedure in Germany and Belgium, where this operation is more common and when there is more long-term data: Long-term Clinical and Echocardiographic Outcomes in Young and Middle-aged Adults Undergoing the Ross Procedure - PubMed - This suggests that once the operation is undertaken on a broader population, the results become closer to mechanical valve. This implies that it isnt the valve replacement type, but rather the health of the individual patient which determines long-term survival.
Full disclosure from my side: I was actually trying to get a Ross procedure during my first AVR back in 2014. But then one of the leading Ross surgeons in the world told me that it would fail early due to the size and shape of my aortic root. So I decided not to do it. I still think it is a good operation to have, but it is good to be aware that you are trading two-three decades of anti-coagulant free life for multiple reoperations down the line (and with current technology, this would be surgical interventions). So from my point of view, this isnt the definite best solution that some surgeons claim it is. The tradeoffs are just different.
Finally, I just had a mechanical valve put in in May. Self-testing is very straight forward. If I can learn how to do it, anyone can.
Good luck with your decision and surgery.
you say: And I guess hopefully I would be able to get tavr for either one in the future. I think that you may want to ask your prospective surgeon about this (if you havent already). From the literature it seems that transcather replacement of their valve after Ross is either not possible or risky,
As you probably know, Dr. Paul Stelzer is one of leading Ross proponents in the US. His recent article says: "Importantly, stenosis of the autograft has never yet been seen which makes valve-in-valve catheter-based therapy impossible for the failed autograft with current technology." Outcomes of reoperations after Ross procedure - Stelzer- Annals of Cardiothoracic Surgery
Dr. Peter Skillington's article (he is a leading Ross proponent in Australia) suggests that Transcather Pulmonary valve replacement carries a high risk of endocarditis. His article says "Furthermore, the risk of IE with the Melody valve may be significant. A recent systematic review of 9 studies including 851 patients showed a wide range of the incidence rate of IE—from 1.3% to 9.1% per patient-year." - See DEFINE_ME
You should be aware that the perceived survival benefits of the Ross could just be due to Patient selection. An international study shows much lower survival of the Ross procedure in Germany and Belgium, where this operation is more common and when there is more long-term data: Long-term Clinical and Echocardiographic Outcomes in Young and Middle-aged Adults Undergoing the Ross Procedure - PubMed - This suggests that once the operation is undertaken on a broader population, the results become closer to mechanical valve. This implies that it isnt the valve replacement type, but rather the health of the individual patient which determines long-term survival.
Full disclosure from my side: I was actually trying to get a Ross procedure during my first AVR back in 2014. But then one of the leading Ross surgeons in the world told me that it would fail early due to the size and shape of my aortic root. So I decided not to do it. I still think it is a good operation to have, but it is good to be aware that you are trading two-three decades of anti-coagulant free life for multiple reoperations down the line (and with current technology, this would be surgical interventions). So from my point of view, this isnt the definite best solution that some surgeons claim it is. The tradeoffs are just different.
Finally, I just had a mechanical valve put in in May. Self-testing is very straight forward. If I can learn how to do it, anyone can.
Good luck with your decision and surgery.
Yeah I remember him talking about tavr, but I honestly don't remember what he said, alot of information to take in.
I feel like since I'm in pretty good health otherwise I'm a good candidate for the Ross.
This whole process it seems is about tradeoffs, mechanical valve, blood thinners, tissue valve, don't last long, I think that you just have to go with what seems like the best option for you.
As far as blood thinners go, it's not the testing that concerns me, it's the risks involved with taking it.
There are risks with each and every option of valve surgery. It sucks, but this is the hand we were dealt I guess. I blame my parents. LOL
I feel like since I'm in pretty good health otherwise I'm a good candidate for the Ross.
This whole process it seems is about tradeoffs, mechanical valve, blood thinners, tissue valve, don't last long, I think that you just have to go with what seems like the best option for you.
As far as blood thinners go, it's not the testing that concerns me, it's the risks involved with taking it.
There are risks with each and every option of valve surgery. It sucks, but this is the hand we were dealt I guess. I blame my parents. LOL
pellicle
Professional Dingbat, Guru and Merkintologist
Hi and welcome
wow that's a good run. I got diagnosed and operated on early (like 5 then 10).
well its interesting that you say that because 99% of people who come here as being afraid of anti-coagulation (you're not going to be on blood thinners, no thinning exists in the drug we take, and there are actually blood thinners, but you won't be on them. Its a misnomer) and find they were all quite wrong about it.
So if you're prepared to evaluate things still we can help you learn and understand ... if not then you're of course welcome to follow Arnie down the higher risk of reoperation pathway.
of course he did ... just like a BMW dealer will tell you a BMW is better than a Mercedes ...
well it sounds like you're already decided so I'll genuinely ask "is there any truth to the asking for insights" bit or are you just seeing positive re-enforcement? Honestly I don't mind either way, but I just don't want to engage in a discussion that the other side doesn't want to engage in.
I hope you don't find yourself on "blood thinners" as time goes by (and you may as you progress) leaving you with two diseased valves and being on blood thinners too, that would be kinda awful.
I do know that proponents of the technique will say its not two valves, but you know, when you look at it critically, it really is.
I've noted that the most un-knowledgable (us patients) are the most fervent in driving their process and as Superman observes
its really a fan base. Have you asked yourself the simple question of "why isn't it more common after nearly 60 years?"
Perhaps this is because it was developed as "an alternative to a mechanical valve replacement, particularly in children and young adults"
https://en.wikipedia.org/wiki/Ross_procedure
Best Wishes
wow that's a good run. I got diagnosed and operated on early (like 5 then 10).
well its interesting that you say that because 99% of people who come here as being afraid of anti-coagulation (you're not going to be on blood thinners, no thinning exists in the drug we take, and there are actually blood thinners, but you won't be on them. Its a misnomer) and find they were all quite wrong about it.
So if you're prepared to evaluate things still we can help you learn and understand ... if not then you're of course welcome to follow Arnie down the higher risk of reoperation pathway.
of course he did ... just like a BMW dealer will tell you a BMW is better than a Mercedes ...
well it sounds like you're already decided so I'll genuinely ask "is there any truth to the asking for insights" bit or are you just seeing positive re-enforcement? Honestly I don't mind either way, but I just don't want to engage in a discussion that the other side doesn't want to engage in.
I hope you don't find yourself on "blood thinners" as time goes by (and you may as you progress) leaving you with two diseased valves and being on blood thinners too, that would be kinda awful.
I do know that proponents of the technique will say its not two valves, but you know, when you look at it critically, it really is.
I've noted that the most un-knowledgable (us patients) are the most fervent in driving their process and as Superman observes
its really a fan base. Have you asked yourself the simple question of "why isn't it more common after nearly 60 years?"
Perhaps this is because it was developed as "an alternative to a mechanical valve replacement, particularly in children and young adults"
https://en.wikipedia.org/wiki/Ross_procedure
Best Wishes
Last edited:
DJ-Rae09
Well-known member
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Hi Tom,
I'm two and half months out post AVR with a mechanical valve.
In my pre surgery lead up, I investigated the Ross and had a meeting with Dr Peter Skilington who is the leading surgeon for Ross here in Australia. My aorta was to big to qualify so he recommended the mechanical valve based on my age (42).....I too was scared of Wafarin with the mechanical valve option plus the clicking.
That's when I found this forum (glad I did too) and for the most part put my mind at ease about my concerns with the mech valve + Wafarin option.
Now just over 2 months out post op, I can honestly say a mechanical valve with Wafarin hasn't made any difference to my daily life. I test my INR at home once or twice a week, takes less than 5 minutes per test. I've been in my INR therapeutic range for a good 2 months. And I like a beer too
Now, I don't have to worry about having a redo or being worried about if/when I need another OHS. This valve should out last me!
Anyway, just wanted to share my experience as I was similar to you a few months back.
Cheers,
Tim.
I'm two and half months out post AVR with a mechanical valve.
In my pre surgery lead up, I investigated the Ross and had a meeting with Dr Peter Skilington who is the leading surgeon for Ross here in Australia. My aorta was to big to qualify so he recommended the mechanical valve based on my age (42).....I too was scared of Wafarin with the mechanical valve option plus the clicking.
That's when I found this forum (glad I did too) and for the most part put my mind at ease about my concerns with the mech valve + Wafarin option.
Now just over 2 months out post op, I can honestly say a mechanical valve with Wafarin hasn't made any difference to my daily life. I test my INR at home once or twice a week, takes less than 5 minutes per test. I've been in my INR therapeutic range for a good 2 months. And I like a beer too
Now, I don't have to worry about having a redo or being worried about if/when I need another OHS. This valve should out last me!
Anyway, just wanted to share my experience as I was similar to you a few months back.
Cheers,
Tim.
I was in my late 20's when I found out that I had a bicuspid aorta valve. At 65 I was told it was time for a new valve. Deciding between a TAVR and mechanical was tough and mind draining. I decided on the mechanical On-X. That was in Dec. 2020 and the Warfarin hasn't been a problem at all!
Arnold Schwarzeneger had the Ross procedure and it didn't last as long as he thought it would and now he has a mechanical. From what I've heard, he has had 3 OHS, I think. You could probably read about it.
I did a ton of research too! The pros of only having one (hopefully) OHS was a better option, even with Warfarin for me! I didn't have many symptoms prior to my surgery except for slowing down going up hills. The mental part prior to surgery is tough and remember you might have to go through that again. My cardiologist and the surgeon, prior to my surgery, both said Warfarin is easy. Turns out they were right!
I didn't find this forum until a few months after my surgery.
Good luck with your decision! Keep us posted!
Arnold Schwarzeneger had the Ross procedure and it didn't last as long as he thought it would and now he has a mechanical. From what I've heard, he has had 3 OHS, I think. You could probably read about it.
I did a ton of research too! The pros of only having one (hopefully) OHS was a better option, even with Warfarin for me! I didn't have many symptoms prior to my surgery except for slowing down going up hills. The mental part prior to surgery is tough and remember you might have to go through that again. My cardiologist and the surgeon, prior to my surgery, both said Warfarin is easy. Turns out they were right!
I didn't find this forum until a few months after my surgery.
Good luck with your decision! Keep us posted!
pellicle
Professional Dingbat, Guru and Merkintologist
if you mean me, no, I wouldn't
pellicle
Professional Dingbat, Guru and Merkintologist
@Thomas67 some general posts I've made on the Ross, so you can get my opinion ... everyone has their own, so don't think mine is special. However if you think the points I raise are valid, then that's different
https://www.valvereplacement.org/threads/schwarzenegger-had-another-ohs.887733/post-900496
I've said in the past that I think that outside its intended usage target in 1962 that The Ross is a procedure looking for surgeons who want to take up its mantle. I've done a quick critical evaluation on one of the few articles (not even a proper article, but an opinion piece) which extols it (here) and have said that I think its a procedure that has very little benefits and really belongs in the dust bin of surgical history (looking for that post as I type this, will update if I find it)
https://www.valvereplacement.org/threads/schwarzenegger-had-another-ohs.887733/post-900496
I've said in the past that I think that outside its intended usage target in 1962 that The Ross is a procedure looking for surgeons who want to take up its mantle. I've done a quick critical evaluation on one of the few articles (not even a proper article, but an opinion piece) which extols it (here) and have said that I think its a procedure that has very little benefits and really belongs in the dust bin of surgical history (looking for that post as I type this, will update if I find it)
Superman
Well-known member
Won’t argue with you there.
Considering I’ve lived most of my life on warfarin, it does seem kind of stupid to me that one would be that afraid of it. But that’s just a different perspective from experience.
I rode mountain bikes and went downhill skiing in my 20’s while on warfarin. I’ve traveled some. Ran a 25k. Got married and had five kids while taking warfarin. Had another open heart surgery due to an aneurysm while on warfarin (and I stayed with mechanical). That surgery was 13 years ago today. My wife and I just hiked the Grand Canyon rim-to-rim. Had my warfarin in my backpack. Enjoyed a salad at the North Rim Lodge when we got out and a beer the next evening with dinner. My family does a lot of hiking in the National Parks and a lot of road trips. If it’s a long trip, my testing supplies are in the first aid bag. I email my results from wherever I am.
I teach a college class and had a fun conversation about my ticking with my students the other evening. I like to tell folks about the lifetime guarantee. They’re never quite sure if it’s okay to laugh or not.
Please don’t take this as telling you what to do. That’s your call. Take it more as if you wake up and find the surgeon had to go another direction, it won’t be the end of the world. You say there are no good options. I say the only bad option is to keep your current valve. The other options all just have trade offs that you need to be ready to accept.
As you can see from my circumstances, even a mechanical valve isn’t a guarantee against future surgery. But it does give the best odds of minimizing that risk. Anyone who’s been split open more than once generally prefers the route that avoids that happening yet again.
pellicle
Professional Dingbat, Guru and Merkintologist
seems decision is already made so really nothing more for me here either.Won’t argue with you there.
Happily I'll probably be dead before the OP figures out what other people have said here "if I had my time again I'd choose differently".
https://www.valvereplacement.org/threads/i-am-so-confused-about-ross-procedure.40903/post-750110
supporting the view both I and the author of the wikipedia page out forward for it being for younger people
https://www.valvereplacement.org/threads/my-experience-with-the-ross-procedure.43045/post-785060
but not even then "always" ... I suspect Lp(a) involved
https://www.valvereplacement.org/th...cedure-and-life-expectancy.887753/post-900741
ploop
DJ-Rae09
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Potentially, but it's hard to say. I was told Ross is a more complex procedure than a standard SAVR. It's two valve replacement replacements instead of one.
Mechanical valve option is proven in terms of durability, from what I've researched here and other places Ross isn't so.
Again for me, Wafarin and self managing my INR is no big deal.
DJ-Rae09
Well-known member
- Joined
- Apr 26, 2022
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pellicle
Professional Dingbat, Guru and Merkintologist
of course, that's the brave face talking there, I know you've had to give up drinking beer, wine or spirts, eating salad or greens, exercise, ***, getting too excited, laughing at movies too hard or playing golf.
What most people simply don't know is that being on warfarin has hidden risks; erectile dysfunction, hair loss, getting your wife pregnant (how many times was that @Superman?), feeling the cold, gagging and probably dying of old age. I'm sure there's a fuller list somewhere.
On the plus side you really can't drink grapefruit juice (and the crowd cheers)
;-)
