Ross Procedure at Mass General

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bicuspidman

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I am 32, male, and have a bicuspid aortic valve. No stenosis or regurgitation yet. I have some enlargement: ascending aorta is 3.9cm diameter, aortic root sinus of valsava is 4cm diameter. This is based on a 2018 MRI. I receive an echo every 1-2 years. That's about where I'm at.

I recently switched from a local cardiologist to Mass General, where I'm soon to schedule an appointment. My local cardiologist's office is still in the process of transferring my records. I've read MGH is a good heart hospital and they're about 90 minutes away driving distance, so I figured it's not too much of a hassle to go there once a year for my tests, given I may want to go there later for my eventual surgery.

I have looked into the various pros and cons of mechanical valves and animal valves and have a strong preference for the Ross Procedure. I want to avoid warfarin due to risk of bleeds and side effects, and hope that by the time I need a re-operation (after Ross) there is a mechanical valve with improvements similar to the on-x valve where, rather than 60% less Warfarin than older-generation valves, one needs no Warfarin at all or, maybe 90% less Warfarin... basically I want to buy some time for technology to catch up a bit.

I mentioned the Ross Procedure to the administrative staff at Mass General but they said such discussion would have to wait either until I see a doctor there or at least with the scheduling staff -- so far I have mainly only been in communication with administrative staff. I am starting to get concerned that, because the Ross Procedure is complex and not commonly performed, maybe MGH does not have surgeons who perform it. If anyone here could let me know one way or the other it would put my mind at ease. I see there is a web page at Brigham -- a hospital in the same 'network' -- which at least mentions the Ross Procedure, but can't really find anything about it on either website.

That being said, does anyone have first-hand experience with the Ross Procedure? Where and by whom did you get it done?

I suspect that, even if MGH does not do the Ross, whichever cardiologist I see there could just refer me elsewhere once it comes time? Do you think they would be resistant to that?

Thank you
 

MdaPA

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does anyone have first-hand experience with the Ross Procedure? Where and by whom did you get it done?
Yes, there are folks here that have experience with the Ross procedure. Use SEARCH bar to find (I listed a few below). I also listed 2 sites with "some" surgeons that do Ross procedure. Suggest starting from there (Don't see any near you in MA though).

Links with Ross surgeons:
Ross Procedure: 10+ Important Facts for Patients
Ross Procedure Surgeons - The Ross Procedure

Posts on Ross procedure:
My Experience with the Ross Procedure
Ross Procedure

the Ross Procedure is complex and not commonly performed, maybe MGH does not have surgeons who perform it.
As you mentioned, the Ross procedure is complex and therefore you should find a surgeon with good experience (and outcomes) with it. You don't want someone who does just a couple per year. They also need to discuss and make sure you understand the distinct disadvantage of this procedure. Usually these surgeons are at larger hospitals so you might need to travel.

I want to avoid warfarin due to risk of bleeds and side effects, and hope that by the time I need a re-operation (after Ross) there is a mechanical valve with improvements similar to the on-x valve where, rather than 60% less Warfarin than older-generation valves, one needs no Warfarin at all or, maybe 90% less Warfarin... basically I want to buy some time for technology to catch up a bit.
I would suggest you make your decision based on what you know today. Mechanical valves have worked for a long time, are trusted and durable. Don't fear and believe all the hype about anti-coagulation meds. Read the posts were folks take these medications and live a normal life so you can make a better, informed decision.
 

Unicusp

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I suspect that, even if MGH does not do the Ross, whichever cardiologist I see there could just refer me elsewhere once it comes time? Do you think they would be resistant to that?

Thank you
Welcome. Tough decision and a personal one. Personally, I would go for the "one and done" option which is the mechanical valve, either St. Jude or On-X. At your age, if you choose the Ross, you're looking at at least one or two more surgeries and each following one has increased risk. Warfarin has been proven safe and effective.
On-X is currently running a clinical trial with Eliquis instead of Warfarin. Supposed to continue for a few more years. But again, you're looking at risks associated with Eliquis, and it is very expensive too.
There are reasons why world leading surgeons such as mine (Dr. Lars Svensson) don't do the Ross procedure. You're basically turning a one valve problem into a two valve problem, disturbing a perfectly healthy pulmonic valve.
Look at the famous Arnold Schwarzenegger who had the Ross in 1997, with 2 following surgeries and the final at the Cleveland Clinic this past October.


It appears that you have time to really research the topic and decide which direction to go. Lots of info out there.

The other big site out there: Adam's Heart Valve Surgery Blog for Patients
Adam Pick himself had the Ross. He appears to be a proponent of the procedure. You could get feedback from him as well.
 

MdaPA

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There are reasons why world leading surgeons such as mine (Dr. Lars Svensson) don't do the Ross procedure.
There are also world leading surgeons that also do the Ross procedure. Dr. Gosta Pettersson is one of them at the same hospital (Cleveland Clinic) as Dr. Svensson. Dr. Pettersson also happens to be the developer of the "Ross reversal" procedure used for re-operations for failed Ross procedures (so he has job security!).

Is it Time to Reconsider Use of the Ross Procedure for Adults?

I have some enlargement: ascending aorta is 3.9cm diameter, aortic root sinus of valsava is 4cm diameter.
Bicuspidman,
See below contraindication (pulled from link below) for Ross procedure to confirm if you are a candidate.

Patient selection

Contraindications include Marfan's syndrome and other connective tissue disorders. Patients with bicuspid aortic valves might belong in the same category and are candidates only if they have no or mild aortic dilation. Rheumatic valve disease, poor left ventricular function, need for replacement of another valve, a bleeding disorder and concomitant medical issues and comorbidities are relative contraindications.

The current status of the ross operation: Does it still have a role for the young adult patient with aortic valve disease?
 

tom in MO

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I am 32, male, and have a bicuspid aortic valve. No stenosis or regurgitation yet. I have some enlargement: ascending aorta is 3.9cm diameter, aortic root sinus of valsava is 4cm diameter. This is based on a 2018 MRI. I receive an echo every 1-2 years. That's about where I'm at.

Sounds like you are in the waiting room and will be for awhile. No need to worry about choices until you are ready for surgery. When that time comes, you may no longer be a Ross procedure candidate. Enjoy life, don't sweat the future. The most you need to do now is to tell your fiancé for reasons of full disclosure :)

What was wrong with your cardiologist that you needed to switch?
 

bicuspidman

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I really appreciate the thoughts and insight everyone. I'll try to keep an open mind about the different options as things progress, maybe my circumstances will be such that at the first intervention a repair (even if temporary) will be possible anyway.

As you mentioned, the Ross procedure is complex and therefore you should find a surgeon with good experience (and outcomes) with it. You don't want someone who does just a couple per year. They also need to discuss and make sure you understand the distinct disadvantage of this procedure. Usually these surgeons are at larger hospitals so you might need to travel.
Mass General is about as big of a hospital as I'll get within driving distance of Connecticut. They are #5 in cardiac surgery per US News rankings so I had a good feeling about them when researching "big heart hospitals near me," but admittedly I have no knowledge whether they perform the Ross or how often. Hopefully I'll find out soon enough. I don't mind travelling to the Cleveland Clinic -- or wherever -- later in life when the surgery is needed, if I am determined to be a good Ross candidate and there is no sort of repair that is possible at Mass General. I would have to confirm they are in my insurance network (which Mass General is). I realize the plane, hotel, etc. would be out-of-pocket but I would be okay with that under the circumstances. I just hope whoever I see at Mass General for the annual testing is open to leaving that as an option, if I am a candidate, and supportive of surgery elsewhere if that is what I decide to go with. I don't want to limit myself to whatever they are capable of doing there. I'd like to keep all my options open regardless of whether each option is something that is doable at the hospital where I am getting the tests or where my cardiologist is affiliated with.

I would suggest you make your decision based on what you know today. Mechanical valves have worked for a long time, are trusted and durable. Don't fear and believe all the hype about anti-coagulation meds. Read the posts were folks take these medications and live a normal life so you can make a better, informed decision.
I know a lot of people don't mind Warfarin and/or have adapted to it. I just want to live as normal a life as possible and hopefully leave blood thinners for my elder years. I feel like getting the Ross at age 50 and a next-gen mechanical valve at age 70 (either On-X or whatever improved valve is available at that time) would be a good outcome. Theoretically if I live into my 90s I am not sure an On-X valve at age 50 would necessarily last the 40+ years anyway? Most of what I've read has suggested a 25-year or so lifespan of mechanical valves, which is only 5 more years than the typical 20 you get out of the Ross. My other concern is that if I had gotten the Ross and waited till age 70 (in that example) by that time there might be an On-Z valve requiring 90% less Warfarin, and I'd have lost out on that by getting the On-X at age 50. I agree there are a lot of variables like whether I'll even be a Ross candidate at the time I need surgery (maybe I'll be lucky and last thru age 70... or maybe they'll be able to do a repair the first time around and that repair will bring me to age 70...) so the mind has to remain open to various solutions in any case. Point taken in that regard.

On-X is currently running a clinical trial with Eliquis instead of Warfarin. Supposed to continue for a few more years. But again, you're looking at risks associated with Eliquis, and it is very expensive too.
That is interesting. If Warfarin is deemed more effective than Eliquis at reducing the stroke risk I might opt for putting up with its side effects over Eliquis anyway. The cost of Eliquis would not be a concern as I have good insurance coverage, at least right now. I suspect with a much lower dose of Warfarin (they say 60%) the side effects would be less prevalent than otherwise. Although Eliquis might be easier to live with as far as not needing to monitor INR, less bleed risk, etc. I am sure it presents risks of its own and if the stroke risk is higher, particularly from one missed dose or the like, that would be concerning.

Adam Pick himself had the Ross. He appears to be a proponent of the procedure. You could get feedback from him as well.
Thanks for this resource. I'll check in.

Bicuspidman,
See below contraindication (pulled from link below) for Ross procedure to confirm if you are a candidate.

Patient selection

Contraindications include Marfan's syndrome and other connective tissue disorders. Patients with bicuspid aortic valves might belong in the same category and are candidates only if they have no or mild aortic dilation. Rheumatic valve disease, poor left ventricular function, need for replacement of another valve, a bleeding disorder and concomitant medical issues and comorbidities are relative contraindications.
I didn't know about dilation being a contraindication, though I've heard it's not recommended for those with Marfan (never been diagnosed with that). My dilation has been described as both "mild" and "borderline" but I don't know how my condition will progress, with regard to any further enlargement or development of stenosis or regurgitation. Maybe if it stays the size it is now and surgery is only required because of other complications (stenosis or regurgitation) I'll remain a candidate. I'll ask the Mass General doctor, for sure.

Sounds like you are in the waiting room and will be for awhile. No need to worry about choices until you are ready for surgery. When that time comes, you may no longer be a Ross procedure candidate. Enjoy life, don't sweat the future. The most you need to do now is to tell your fiancé for reasons of full disclosure :)

What was wrong with your cardiologist that you needed to switch?
I hope by "awhile" you mean I won't need surgery till age 70+ or never... ;) Time will tell I suppose. I just want to be prepared. If I do make it that far I may opt for the one-and-done mechanical valve of that era, hopefully one that is even better than On-X.

I didn't need to switch cardiologists per se but he was never my favorite doctor. Rather than share my concerns he would often, sort of as you suggested, attempt to dispel my concerns, be vague about the exact measurements of echos, and emphasize the possibility of not needing surgery for a good amount of time. I don't necessarily doubt the possibility that I could last into my 50s, hopefully 60s or later, but I at the same time want to be prepared and know the exact difference between this year's echo and last year's echo. I have Asperger's and anxiety and discussed my interactions with him with my psychologist and she agreed he just might not be the best "fit" for me. His approach is probably great for a lot of people who want to forget about it as much as possible until the time for surgery comes but that will never really be a possibility for me; the only chance I have at feeling somewhat comfortable is knowing my measurements each year, tracking the difference, learning what solutions I am and am not a candidate for, where things might be headed, etc. If the concern is shared and I get all that information it will not necessarily put me at ease but it would at least make me feel prepared, and there is a degree of comfort in feeling prepared.

Aside from all that, it's not so much about him as it is wanting Mass General, they seem to be the best hospital for these sorts of procedures within reasonable driving distance, so I think it will be comforting to get established as a patient at the hospital where I might eventually end up getting surgery. That way if/when the time comes I won't be shuffling about trying to get my records transferred and established as a patient. I am sort of on the fence about whether it was the right decision and probably won't know until I see a doctor there, but I'm hopeful.

I'll keep you posted once I have my first appointment at MGH. Thanks again.
 

pellicle

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and have a strong preference for the Ross Procedure. I want to avoid warfarin due to risk of bleeds and side effects, and hope that by the time I need a re-operation
my advice is to actually understand the reality of warfarin and not the general fear. You aren't buying a washing machine or a car stereo.

Nobody with any level of thoughtfulness submits willingly as a plan for a redo ... that's just daft IMO.

If you wish to avoid it (because of some pathalogical fears that can't be dealt with) then why would you pick a surgery (the Ross) which has no known durability benefits over a tissue prosthesis and gives you two non natural valves (your Tricuspid not designed to cope with Aortic pressures in the Aortic position and a tissue prosthetice in your Tricuspid valve position).

I would suggest you grab a cup of your favourite beverage, a pencil and a pad and make notes on this presentation (which is lengthy), but decide in haste repent at you leisure is ok with a washing machine, not so smart for your health, so put in the yards now I say.


I then suggest you have a read of my blog post on the subject doing some analysis of Dr Schaffs video here:


My own history is a history is that I've now had 3 OHS which were all on my Aortic valve:
  1. repair at about age 12
  2. homograft at about 28
  3. mechanical with aortic graft (due to aneurysm) at about 48
remember ... the devil lurks in the details not the fears from the unconscious

Warfarin therapy is in fact a piece of piss to manage. I've got blog posts on that here (which are in reverse order of publication (latest presented first):


I recommend you read this one first, even if just the start of it, because its lengthy and detailed.

Best Wishes
 

bicuspidman

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Pellicle -- Honestly, it is a little offensive for you to ascribe my hesitancy to sign up for lifelong Warfarin therapy to some irrational pathological fear (or "fears from the unconscious..." what?) or that I am somehow evaluating this decision the same way I would choose a washing machine. It's not really the way to get your point across... I am certainly not the only one who doesn't want to be on Warfarin for the rest of their lives, and different people live different lifestyles which do or do not mix well with Warfarin. You know nothing about me or my lifestyle. You come across as though you think anyone who has ever gotten the Ross procedure is an idiot. While it is acceptable for you to believe a mechanical valve was the best decision for yourself, it is absurd for you to suggest that "Nobody with any level of thoughtfulness" would choose the Ross for themselves.

I find your assertion that Ross has "no known durability benefits over a tissue prosthesis" simply untrue. In young patients you are not going to get 20 years out of a cow or pig valve due to calcification of the valve. The cow or pig valves last longer in older patients, though still topping out around 15 years. Modifications of the Ross (aimed at preventing dilation) result in a reasonable expectation of 20 years:
... there is no shortage of literature supporting the Ross. Yes, not everyone is a candidate. Yes, there are cons. Yes, it's not done everywhere and you want to do it at a place where it is commonly done. Yes, it's not permanent (nor is a mechanical valve, depending on the age it's put in). But there are a lot of pros, there are studies which back that up, and for some people it is the right choice. It is not something only the thoughtless consider.

Warfarin interacts with many medications, you cannot drink (much), and you must regularly monitor your INR. Different people experience different side effects. I knew someone who had bandaids all over their skin because of the side effects from it (yes, I understand different people experience different side effects, and that not everyone is the same -- a realization that would serve you well). Then there's the risk of bleeds. If you have not had a bad experience with it, and your lifestyle did not need to be significantly changed in order to handle it, that's great, but it doesn't mean the decision that was right for you is right for everyone else.

I understand the eventual need for re-operation. If I needed surgery tomorrow and got a mechanical valve I would probably need to get that valve replaced by the time I die anyway, unless I die an unfortunately early death, which I'm not sure I want to work into my plan for life.

If I make it long enough with my diseased valve and am in my 60s at the time of surgery I will not be a candidate for Ross anyway and will likely lean toward mechanical; that is in fact what I'm hoping for. In the unfortunate event things become problematic earlier, I would prefer living the life a younger person, which does not include thinking about INR numbers every time I go to a bar, or whether Warfarin will interact with the 1,000 other medications I might have to be on for non-heart-related conditions by the time I die.
 

pellicle

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Pellicle -- Honestly, it is a little offensive for you to ascribe my hesitancy to sign up for lifelong Warfarin therapy to some irrational pathological fear (or "fears from the unconscious..." what?)
I'm sorry you are so easily offended. I think you don't have a good firm grasp on this.

I don't believe you understand what a "redo is" (and its certainly not just having another one, its an entirely different operation with additional different risks and problems).

odifications of the Ross (aimed at preventing dilation) result in a reasonable expectation of 20 years
1) up to 20 years

so you'll be around 50 ... then going in for something with two valves which may need surgery. Don't think that time won't come.

Its true however that a mechanical is not a certainty for not needing a reoperation, aneurysm can drive it.

You have not addressed two valves being destroyed for really only needing one. You've not addressed other non warfarin alternatives, such as bioprosthetic and homograft both are options to delay you being on warfarin. Given that you seem to want to set up for a redo..

What you choose is what you choose, it will only be you who (in say 20 years) is suffering from that.

Warfarin interacts with many medications, you cannot drink (much),
it interacts with some medications, maybe you'll never need those it interacts with. You seem to misunderstand the drinking issue and that leads me to suspect you're blowing it out of proportion based on misunderstanding.

I see you did not watch that video or read that presentation.

I can see that you're clear about what you want to do, and so you should do it. But if you came here asking for advice perhaps you should listen to it? I mean its possible that I know something you don't and have experiences you don't.

Best Wishes
 

bicuspidman

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I don't believe you understand what a "redo is" (and its certainly not just having another one, its an entirely different operation with additional different risks and problems).
I was confused by your assertion that opting for the Ross procedure was a "plan for a redo" as no one plans for a redo, though they do plan for eventual reoperation. Your sarcasm and bias took two posts to become clear. You must think that the Ross procedure results in frequent redo operations. Can you cite a source which supports that? (Ross procedure in adults presenting with bicuspid aortic valve and pure aortic regurgitation: 85% freedom from reoperation at 20 years† "Despite being a 2-valve operation, it is associated with a relatively low rate of reoperation in experienced hands")

1) up to 20 years
I do not believe Ross lasts "up to" 20 years, I believe that is the typical expectation. Can you cite a source saying it never lasts more than 20 years, and/or however long you think it typically lasts? There are studies showing ~90% freedom from reoperation at 15 years. Rare Heart Procedure Keeps Aortic Valve Healthy for Over 20 Years "While tissue valves last approximately 10-15 years before needing to be replaced, the Ross procedure can extend the need for future aortic valve replacement surgeries typically by 20 years or longer. That’s because a patient’s own valve is more compatible than a tissue valve and less likely to deteriorate as quickly."

so you'll be around 50 ... then going in for something with two valves which may need surgery. Don't think that time won't come.
I do not not think the time won't come that I eventually need reoperation. Thanks for pointing that out.

You have not addressed two valves being destroyed for really only needing one.
I do not believe repositioning an existing valve and adding another pulmonary valve from a dead person results in both valves being immediately destroyed. Surely no one would get the surgery if it did, but it's interesting you characterize it that way, clearly you're an open-minded lad and not biased at all. I believe it results in about 20 years of normal life without the need for anticoagulation and clicking sounds, before eventually requiring that or a tissue valve much later in life than otherwise, which is convenient given tissue valves last longer in older patients.

You've not addressed other non warfarin alternatives, such as bioprosthetic and homograft both are options to delay you being on warfarin. Given that you seem to want to set up for a redo..
Cow and pig valves do not last very long in young patients, and I only ever said I would consider Ross if I need the surgery young. I would definitely consider such a valve -- more likely cow -- if it is not until later in life that I need the surgery. Young age is contraindication for homograft, so, no. I would rather have a 20-year bandaid than a 7-year bandaid.

As for your assertion I want to set myself up for a redo, between your own interchangeable use of the words redo and reoperation, combined with your sarcasm, I honestly don't know what you're trying to say.

it interacts with some medications, maybe you'll never need those it interacts with.
Unfortunately I cannot choose which medications I will require over the course of my hopefully long life, nor whether they happen to be ones which interact with Warfarin. I would clarify that it is not "some" medications, but "many." If I had to guess 90% of drug commercials end with the words "do not take if you are on Warfarin..."

You seem to misunderstand the drinking issue and that leads me to suspect you're blowing it out of proportion based on misunderstanding.
What is it I misunderstood about the drinking issue? Are you saying drinking does not affect INR and you can drink as much or as little as you want on any day without adjusting the Warfarin dose? It just doesn't matter? Or is this where you say it does matter but is "piece of piss to manage"?

I see you did not watch that video or read that presentation.
You linked to a video and a blog post of your own writing which did not discuss the Ross Procedure. Ross does not use a cow or pig valve, which is what the bioprosthetic valve stats you are discussing refer to. Perhaps your analysis will be something to consider if I am choosing between a mechanical valve or tissue valve much later in life, for example after postponing that surgery via Ross. Given that you didn't discuss Ross, I am not sure what you are saying I didn't read. Can you point out which paragraphs of your blog post discuss Ross?

I can see that you're clear about what you want to do, and so you should do it. But if you came here asking for advice perhaps you should listen to it? I mean its possible that I know something you don't and have experiences you don't.
Seriously? In your own blog post (which you claim I didn't read) you opine the only people who choose tissue valves are those who can't take care of themselves, are mentally ill, or are pregnant... I am willing (and interested) to hear different people's experiences, pros and cons they have had with each approach, but not so willing to entertain such rambling.
 

pellicle

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Young age is contraindication for homograft, so, no. I would rather have a 20-year bandaid than a 7-year bandaid.
you won't find this quality of follow up often
The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements.
RESULTS:
The 30-day/hospital mortality was 3% overall, falling to 1.13 +/- 1.0% for the 352 homograft root replacements.​
Actuarial late survival at 25 years of the total cohort was 19 +/- 7%.​
Early endocarditis occurred in two of the 1,022 patient cohort, and freedom from late infection (34 patients) actuarially at 20 years was 89%. One-third of these patients were medically cured of their endocarditis.​
Preservation methods (4 degrees C or cryopreservation) and implantation techniques displayed no difference in the overall actuarial 20-year incidence of late survival endocarditis, thromboembolism or structural degeneration requiring operation.​
Thromboembolism occurred in 55 patients (35 permanent, 20 transient) with an actuarial 15-year freedom in the 861 patients having aortic valve replacement +/- CABG surgery of 92% and in the 105 patients having additional mitral valve surgery of 75% (p = 0.000).​
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).​

I believe you're in the 21-40 years age group. I'm one of that cohort and I got my homograft at 28 ... it lasted until I was 48 and were it not for an aneurysm I would have got more.

I'm stepping back from this because you come across as agressive and I'm not interested in a fight. You have your opinions and you don't seem to be amenable to hearing other ones.

I wish you well in your future.

 

Chuck C

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I am 32, male, and have a bicuspid aortic valve. No stenosis or regurgitation yet. I have some enlargement: ascending aorta is 3.9cm diameter, aortic root sinus of valsava is 4cm diameter. This is based on a 2018 MRI. I receive an echo every 1-2 years. That's about where I'm at.

I recently switched from a local cardiologist to Mass General, where I'm soon to schedule an appointment. My local cardiologist's office is still in the process of transferring my records. I've read MGH is a good heart hospital and they're about 90 minutes away driving distance, so I figured it's not too much of a hassle to go there once a year for my tests, given I may want to go there later for my eventual surgery.

I have looked into the various pros and cons of mechanical valves and animal valves and have a strong preference for the Ross Procedure. I want to avoid warfarin due to risk of bleeds and side effects, and hope that by the time I need a re-operation (after Ross) there is a mechanical valve with improvements similar to the on-x valve where, rather than 60% less Warfarin than older-generation valves, one needs no Warfarin at all or, maybe 90% less Warfarin... basically I want to buy some time for technology to catch up a bit.

I mentioned the Ross Procedure to the administrative staff at Mass General but they said such discussion would have to wait either until I see a doctor there or at least with the scheduling staff -- so far I have mainly only been in communication with administrative staff. I am starting to get concerned that, because the Ross Procedure is complex and not commonly performed, maybe MGH does not have surgeons who perform it. If anyone here could let me know one way or the other it would put my mind at ease. I see there is a web page at Brigham -- a hospital in the same 'network' -- which at least mentions the Ross Procedure, but can't really find anything about it on either website.

That being said, does anyone have first-hand experience with the Ross Procedure? Where and by whom did you get it done?

I suspect that, even if MGH does not do the Ross, whichever cardiologist I see there could just refer me elsewhere once it comes time? Do you think they would be resistant to that?

Thank you
Welcome. You have come to the right place to seek good feedback and solid advice. Many of the members here have been through 2 or 3 valve surgeries and there is a priceless amount of wisdom here.
I read your back and forth with Pellicle. The thing I would encourage you to understand is that he is very matter of fact and might come across very blunt, but he is a wealth of wisdom, having been through three valve surgeries. He is also a person who understands data at a level that very few can match. He was critical in presenting data to me that allowed me to see through the marketing that was causing me to lean towards a tissue valve, and, with clinical data to support my choice ultimately choosing a mechanical valve 2 weeks ago at UCLA.

I think that you are wise to seek advice on which surgeon to choose for the Ross Procedure and to look to hear from others who have had the procedure. It is a complex procedure and if this is ultimately the one you decide to go with, I would not settle for anything less than having the best Ross surgeon in the country do your operation- even if there is a long waiting list. I would consult with the top surgeons for Ross well ahead of time, before you need surgery, look at their survival data for the procedure and then make your choice who to go with.

Having said all that, I would like to make the case for why I think that you should consider a mechanical valve over Ross at your age.

The arguments for Ross are similar to that of the tissue valve.
1. Live an active life and do whatever you want to do.
2. No worries about warfarin and bleeds.

The downsides to the Ross:
1. You will certainly face reoperation and probably more than one reoperation.
2. Pulmonary reoperation is more complicated than aortic valve with worse outcomes. I could be wrong about this and am not going to take the time to research right now, but I am almost certain when I looked at it I found that there was a much higher mortality rate for pulmonary
3. Each successive operation carries more risk, largely due to scar tissue.
4. As others have noted, you are taking a one valve problem and creating a two valve problem down the road.

You are probably familiar with Arnold Schwarzenegger's story:
.

His 1997 Ross led to a pulmonary replacement 21 years later and then replacement of his aortic valve just two years after that. At your age, you will almost certainly face the same situation and because you are about 20 years younger than Arnold was when he got his Ross, you will likely be looking at even more potential surgeries after the first round of replacements. I would argue, Schwarzenegger was one of the success stories and either of your valves could fail long before his did.

Getting a tissue valve at your age should be completely off the table, so the choice would almost certainly be between mechanical and Ross.

I will take a stab at the arguments for and against a mechanical valve. For me this was personal, but at my age of 53, I was looking at tissue vs mechanical.

Arguments for mechanical valve:
1. very good possibility that you will never need another valve surgery. The valves are designed to outlast you. There is good 30 year outcome data on the St Jude mechanical valve with 89% of the valves free from needing reoperation. There are many members here who are a witness to the longevity of these valves- many have mechanical valves done 30 years ago, 40 years ago and even 50+ years ago. Dick's mechanical valve is 52 years old and he is 85 years old. Tissue and Ross can not touch these kind of numbers. Look at the Ross studies and try to find one that goes out 30 years. If you find one, please note the mortality rate.
2. It is a relatively straight forward procedure with very high survival rates. At your age you would probably have better than a 99.5% survival rate for this procedure.

Arguments against mechanical:
1. You will be on warfarin the rest of your life and will be subject to the risk of having a major bleeding event. This will mean tracking your INR and paying attention to things which could cause big swings.
2. You will hear a clicking sound.

Having just had a St. Jude mechanical valve put in 2 weeks ago, I can speak to the clicking. It is not a big deal at all. The only time you hear it is when it is quiet. Personally, it does not bother me at all unless I am trying to sleep. When I am trying to sleep I just create white noise and turn on my HEPA filter and problem solved- can't hear it at all.

As far as warfarin, I researched this extensively. Rather than listen to horror stories presented by surgeons promoting Ross or promoting tissue valves, yes they really do cherry pick and present horror stories, I would read the hundreds and probably thousands of posts on this forum by people who are living on warfarin. It is not nearly the monster that some have made it out to be.

1. You can still have an active life on warfarin. People here still downhill ski, play basketball, go mountain biking and all kinds of sports.
2. If you self monitor, as I will be doing, you can bring your risk of having a bleed or a stroke down dramatically- almost to the level of the general population.
Here are some statistics that Pellicle has posted often. You will note how drastically events are reduced when you keep your INR in range. If you talk to the people who self monitor their INR, they will tell you that it is relatively easy to stay within this safe range of 2.0 to 3.5. Really the numbers don't start to get that bad until you get over 4.5, so you have a lot of margin to work with to stay safe.

1617776823384.png


3. Alcohol. I like to have myself a drink, or 6 from time to time when I let my hair down. For the vast majority of people this is not a problem, as you will hear from people on this board. If you self monitor you can test yourself after a night during which you have a few and see how much it affects you. Alcohol interferes with the clearance of warfarin in your system, but your INR tends to move very slowly, and this is generally not a probably for folks. Where you do find this to be a problem- you will be able to find case studies online where a person goes on vacation for 10 days, who does not drink much, then drinks several drinks per day for 10 days and gets into trouble with a high INR at the end of his trip. Yes, changing your drinking habits like this for many consecutive days can get you in trouble, so you need to be smart about how you use alcohol and know how your INR reacts to it.

Anyway, those are my thoughts. Regardless of which procedure you choose, know that we are with you and you have come to the right place for guidance.
 

Attachments

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Meanjellybean

3 OHS, 1 mechanical on the way - ETA 2 - 4 months
Joined
Mar 7, 2021
Messages
57
Location
Australia, NSW
Welcome. You have come to the right place to seek good feedback and solid advice. Many of the members here have been through 2 or 3 valve surgeries and there is a priceless amount of wisdom here.
I read your back and forth with Pellicle. The thing I would encourage you to understand is that he is very matter of fact and might come across very blunt, but he is a wealth of wisdom, having been through three valve surgeries. He is also a person who understands data at a level that very few can match. He was critical in presenting data to me that allowed me to see through the marketing that was causing me to lean towards a tissue valve, and, with clinical data to support my choice ultimately choosing a mechanical valve 2 weeks ago at UCLA.

I think that you are wise to seek advice on which surgeon to choose for the Ross Procedure and to look to hear from others who have had the procedure. It is a complex procedure and if this is ultimately the one you decide to go with, I would not settle for anything less than having the best Ross surgeon in the country do your operation- even if there is a long waiting list. I would consult with the top surgeons for Ross well ahead of time, before you need surgery, look at their survival data for the procedure and then make your choice who to go with.

Having said all that, I would like to make the case for why I think that you should consider a mechanical valve over Ross at your age.

The arguments for Ross are similar to that of the tissue valve.
1. Live an active life and do whatever you want to do.
2. No worries about warfarin and bleeds.

The downsides to the Ross:
1. You will certainly face reoperation and probably more than one reoperation.
2. Pulmonary reoperation is more complicated than aortic valve with worse outcomes. I could be wrong about this and am not going to take the time to research right now, but I am almost certain when I looked at it I found that there was a much higher mortality rate for pulmonary
3. Each successive operation carries more risk, largely due to scar tissue.
4. As others have noted, you are taking a one valve problem and creating a two valve problem down the road.

You are probably familiar with Arnold Schwarzenegger's story:
.

His 1997 Ross led to a pulmonary replacement 21 years later and then replacement of his aortic valve just two years after that. At your age, you will almost certainly face the same situation and because you are about 20 years younger than Arnold was when he got his Ross, you will likely be looking at even more potential surgeries after the first round of replacements. I would argue, Schwarzenegger was one of the success stories and either of your valves could fail long before his did.

Getting a tissue valve at your age should be completely off the table, so the choice would almost certainly be between mechanical and Ross.

I will take a stab at the arguments for and against a mechanical valve. For me this was personal, but at my age of 53, I was looking at tissue vs mechanical.

Arguments for mechanical valve:
1. very good possibility that you will never need another valve surgery. The valves are designed to outlast you. There is good 30 year outcome data on the St Jude mechanical valve with 89% of the valves free from needing reoperation. There are many members here who are a witness to the longevity of these valves- many have mechanical valves done 30 years ago, 40 years ago and even 50+ years ago. Dick's mechanical valve is 52 years old and he is 85 years old. Tissue and Ross can not touch these kind of numbers. Look at the Ross studies and try to find one that goes out 30 years. If you find one, please note the mortality rate.
2. It is a relatively straight forward procedure with very high survival rates. At your age you would probably have better than a 99.5% survival rate for this procedure.

Arguments against mechanical:
1. You will be on warfarin the rest of your life and will be subject to the risk of having a major bleeding event. This will mean tracking your INR and paying attention to things which could cause big swings.
2. You will hear a clicking sound.

Having just had a St. Jude mechanical valve put in 2 weeks ago, I can speak to the clicking. It is not a big deal at all. The only time you hear it is when it is quiet. Personally, it does not bother me at all unless I am trying to sleep. When I am trying to sleep I just create white noise and turn on my HEPA filter and problem solved- can't hear it at all.

As far as warfarin, I researched this extensively. Rather than listen to horror stories presented by surgeons promoting Ross or promoting tissue valves, yes they really do cherry pick and present horror stories, I would read the hundreds and probably thousands of posts on this forum by people who are living on warfarin. It is not nearly the monster that some have made it out to be.

1. You can still have an active life on warfarin. People here still downhill ski, play basketball, go mountain biking and all kinds of sports.
2. If you self monitor, as I will be doing, you can bring your risk of having a bleed or a stroke down dramatically- almost to the level of the general population.
Here are some statistics that Pellicle has posted often. You will note how drastically events are reduced when you keep your INR in range. If you talk to the people who self monitor their INR, they will tell you that it is relatively easy to stay within this safe range of 2.0 to 3.5. Really the numbers don't start to get that bad until you get over 4.5, so you have a lot of margin to work with to stay safe.

View attachment 887699

3. Alcohol. I like to have myself a drink, or 6 from time to time when I let my hair down. For the vast majority of people this is not a problem, as you will hear from people on this board. If you self monitor you can test yourself after a night during which you have a few and see how much it affects you. Alcohol interferes with the clearance of warfarin in your system, but your INR tends to move very slowly, and this is generally not a probably for folks. Where you do find this to be a problem- you will be able to find case studies online where a person goes on vacation for 10 days, who does not drink much, then drinks several drinks per day for 10 days and gets into trouble with a high INR at the end of his trip. Yes, changing your drinking habits like this for many consecutive days can get you in trouble, so you need to be smart about how you use alcohol and know how your INR reacts to it.

Anyway, those are my thoughts. Regardless of which procedure you choose, know that we are with you and you have come to the right place for guidance.
Haha go @Chuck C !
Even used the pellicle graph! Love it!!

All valid points.. makes me happy that i chose mechanical 🙂👍 few more weeks to go.

"A modern philosopher said that if a choice is difficult, that means both paths have equal merit. Take heart in that since you then cannot make a wrong choice" - wise words

I would say that each journey has its own merits and trials, what you are happy to take and be prepared for is your choice..
 

Warrick

Well-known member
Joined
Dec 27, 2015
Messages
636
Location
New Zealand
I can’t recall seeing any posts on here regarding bileaflet mechanical valve failures,
I recall I’ve seen a few posters on here with the tilting disc valve design up over 30 years although from what Iv read they were prone to cracks in the frame.

My father has a St Jude bileaflet valve implanted in 1985. The bileaftlet pyrolitic carbon valve back then had only been around for 8 or 9 years so was a toddler compared to valves like the Star Edwards.
So 36 years later his St Jude valve is still ticking fine which I believe is a solid testament to the bileaflet design and the incredulous durability of pyrolitic carbon.
There are certainly isolated cases of mechanical valve failure like here-
As for warfarin for me it is so much of a simple thing to deal with. I only knew of warfarin from my Dad taking it and I remember growing up his biggest worry was it was going to make him bald...
So I only learnt of all the warfarin myths and peoples aversion to the stuff on this forum.
I guess its not for everyone but if anything I have found managing my own warfarin dosing empowering and it gives me a sense of personal pride, its not something if I ran around telling everyone my INR was 2.4 today anyone would understand but I dont care lol.
As for multiple chest cracks hey plenty of people do it, my mates 14 year old grandson has had 3 OHS but certainly not by choice.
My chest after one still creaks and I still have intermittent costochondritis on one rib over 5 years later.
 
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almost_hectic

Well-known member
Joined
Jun 30, 2015
Messages
643
Location
naples, florida
Welcome. Tough decision and a personal one. Personally, I would go for the "one and done" option which is the mechanical valve
Yes a personal decision for sure. I would also go one and done though. Having been on warfarin now I can honestly say its been no big deal for me. None of the scary stuff they say can potentially happen has ever happened to me in the past five years. In the future will it, who knows... But Ive learned to manage it without much effort at all. And I can say my experience with my surgery was a bit rough, and I wouldn't ever willingly choose to do it again, so taking a tiny pill every day instead of another surgery is fine by me.
 

Unicusp

Well-known member
Joined
Jan 30, 2021
Messages
170
Regarding mechanical valve testing and durability, the following is a response I received from On-X Technical while researching the valves. I'm sure that St. Jude can produce similar test results.
In summary, you are never "too young" (as an adult) to get a mechanical valve.

"Your main question regarding the durability of mechanical valves (how long will they last) is a good one. Valve companies must provide accelerated wear testing data (Accelerated Durability) to the FDA. The companies follow a very strict and standardized protocol where we rapidly open and close (cycle) the valves through 600 million cycles. This is done on a high speed tester with many valves being tested. The tester has the valves opening and closing so rapidly that you need a strobe light to see the valves cycling. 600 million cycles is 15 years of valve opening/closing. This process can take approximately 3 years, as we remove the valves from the tester at various intervals to measure the carbon wear depth. After the 600 million cycles is complete, the companies will then take their valves and measure the wear depth against a maximum allowable wear depth level. At this point you can get an idea of how much wear occurs over 15 years, and then extrapolate out the wear data until it crosses over the maximum allowable line. In doing this, we can prove to the FDA that the On-X valve will not ‘wear out’ during the lifetime of any patient, and some have extrapolated out to nearly 200 years of opening and closing. In the On-X valve Clinical Evaluation Report, we have entered 99 years of wear as our official number and it also states that the On-X valve will not wear out over the course of a patient’s lifetime.

The On-X valve was implanted in the first patient on September 12th, 1996 and the valve assembly has not changed since this time. On-X aortic valve was approved by FDA in 2001, so there is a long established track record of excellence, safety and effectiveness of the On-X valve."
 
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MdaPA

Well-known member
Joined
Jul 8, 2020
Messages
111
I have looked into the various pros and cons of mechanical valves and animal valves and have a strong preference for the Ross Procedure. I want to avoid warfarin due to risk of bleeds and side effects, and hope that by the time I need a re-operation (after Ross) there is a mechanical valve with improvements similar to the on-x valve where, rather than 60% less Warfarin than older-generation valves, one needs no Warfarin at all or, maybe 90% less Warfarin... basically I want to buy some time for technology to catch up a bit.
bicuspidman,
Have you thought about the possibility of having it repaired and/or of the Ozaki procedure? Here is a post from a member who had it for BAV.

Having Ozaki Procedure July 10th
 
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