ROSS Procedure Talk

[PeteCrev]

Deciding on weather to do the ROSS or not.....Can anyone help with some pros and cons or experience? All new to this and any info would help.
38 year old Male with a bicuspid Valve.

 

[pellicle]

Just the other day

http://www.valvereplacement.org/forums/showthread.php?41998-My-Experience-with-the-Ross-Procedure

Also some points here and here.

I'm not a surgeon and i had a bicuspid aortic repaired then replaced (twice), so can't speak from knowledge or from experience.

I see on a previous thread you expressed interest in the Ross but seems you got no answers. Why the Ross?

Seems that they take a perfectly good valve and cut it out to replace the aortic and then need to put in a mechanical there anyway. With so few Ross patients vs regular valve replacement (via tissue or mechanical) it will be difficult to get many replies. You are not certain of avoiding future surgery by taking the Ross anyway.

Well sus out those threads and see if you can contact those members is my advice

 

[PeteCrev]

Just the other day

http://www.valvereplacement.org/forums/showthread.php?41998-My-Experience-with-the-Ross-Procedure

Also some points here and here.

I'm not a surgeon and i had a bicuspid aortic repaired then replaced (twice), so can't speak from knowledge or from experience.

I see on a previous thread you expressed interest in the Ross but seems you got no answers. Why the Ross?

Seems that they take a perfectly good valve and cut it out to replace the aortic and then need to put in a mechanical there anyway. With so few Ross patients vs regular valve replacement (via tissue or mechanical) it will be difficult to get many replies. You are not certain of avoiding future surgery by taking the Ross anyway.

Well sus out those threads and see if you can contact those members is my advice

Thank you. I just thought the ROSS would save me more surgeries down the road and wouldn't have to be on blood thinners forever. I know it's not a sure thing....that's why I am looking for some advice.

 

[pellicle]

Hi

Thank you.

No problems, glad to offer inputs and help anyone with these difficult choices...

I just thought the ROSS would save me more surgeries down the road and wouldn't have to be on blood thinners forever. I know it's not a sure thing....

Well to me "blood thinners" is over demonized, the reality is usually nothing like the fears. To my view of things you stand the best chance of avoiding future surgeries by going with a mechanical valve.

All other factors are personal choices. But repeat surgeries increase complications and risks.

Just don't over blow warfarin into something it isn't.
http://www.valvereplacement.org/for...-my-days-in-the-hospital!&p=541792#post541792

There are plenty of opinions one way or another on here about the topic of tissue vs mechanical, so someone else can wave the flag for tissue ;-)

 

[PeteCrev]

Hi



No problems, glad to offer inputs and help anyone with these difficult choices...



Well to me "blood thinners" is over demonized, the reality is usually nothing like the fears. To my view of things you stand the best chance of avoiding future surgeries by going with a mechanical valve.

All other factors are personal choices. But repeat surgeries increase complications and risks.

Just don't over blow warfarin into something it isn't.
http://www.valvereplacement.org/for...-my-days-in-the-hospital!&p=541792#post541792

There are plenty of opinions one way or another on here about the topic of tissue vs mechanical, so someone else can wave the flag for tissue ;-)

Thanks for the advice and i will look it over.

 

[-andrew-]

Re: ROSS Procedure Talk

Hi Pete, You'll have seen my recent post on my thoughts on the Ross Procedure. Even though mine failed after 11 years, I still don't regret my decision. Also, the reason it failed is now better understood and so in theory the number of such failures should be reduced in the future. Had it not been for my aortic root enlargement, the valves would have both been operating well 11 years after the original op. But of course there are other ways the Ross can fail and since it involves two valves, its higher risk surgery.

I guess it comes down to a personal decision on what level of risk you're willing to take during the surgery itself and afterwards in terms of the risk of repeat surgeries in order to avoid the negative aspects of mechanical valves e.g. noisy valves and blood thinners. I'm interested to read posts on here from people who've had both types of valves - tissue and mechanical - and are very happy with their mechanicals and being on warfarin. There are lots of people who are very active and pursue a whole range of different sports and don't see taking warfarin as a major inconvenience. So its not an easy decision and is very personal. Probably the main reason I didn't feel ready to take warfarin was that I wanted to virtually forget about my heart issues for a period of time (after successful surgery) and didn't want the regular reminder that managing INR levels would bring - very much a 'head in the sand' approach, but it worked for me at the time.

Best of luck with making your decision,

Andrew

 

[PeteCrev]

Hi Pete, You'll have seen my recent post on my thoughts on the Ross Procedure. Even though mine failed after 11 years, I still don't regret my decision. Also, the reason it failed is now better understood and so in theory the number of such failures should be reduced in the future. Had it not been for my aortic root enlargement, the valves would have both been operating well 11 years after the original op. But of course there are other ways the Ross can fail and since it involves two valves, its higher risk surgery.

I guess it comes down to a personal decision on what level of risk you're willing to take during the surgery itself and afterwards in terms of the risk of repeat surgeries in order to avoid the negative aspects of mechanical valves e.g. noisy valves and blood thinners. I'm interested to read posts on here from people who've had both types of valves - tissue and mechanical - and are very happy with their mechanicals and being on warfarin. There are lots of people who are very active and pursue a whole range of different sports and don't see taking warfarin as a major inconvenience. So its not an easy decision and is very personal. Probably the main reason I didn't feel ready to take warfarin was that I wanted to virtually forget about my heart issues for a period of time (after successful surgery) and didn't want the regular reminder that managing INR levels would bring - very much a 'head in the sand' approach, but it worked for me at the time.

Best of luck with making your decision,

Andrew

Andrew- Thank you for your concern…..this sight has been awesome for advice and just all in all help! I actually made an appointment for tomorrow to discuss my options with my Cardio. The 2 major decisions are that I’m young 38 and think I am strong enough for a major surgery like the ROSS.. And 2 is that, like you had mentioned the remembrance of having a heart condition that the blood thinners would remind me of.
A year ago when I found out about this changed my world upside down. At the time I had no idea and didn’t realize I had the symptoms until a few months ago after reading these blogs that I do have all the symptoms…..and it’s scary. I feel like a ticking time bomb….Which a year ago the cardio said that wasn’t the case/

 

[pellicle]

just a perspective:

if I had had a mechanical back when I was 28 instead of a tissue I would have been getting on with my life and doing things and would have adapted to the taking of medicine daily as I now do.

I would probabl not have had the third surgery and therefore would not be going through all the total crap that I am with the infection I got in the surgery (read my thread on my struggle with that).

I would be aware that I'd had surgery (well the scar kinda shows that too right?) so pretending that it isn't happening is just that: pretending.

So decisions on the basis of 'avoiding being aware of reality' are like going to the casino, where you really do know that the odds are in favour of the house.

Also, should you have something like atrial fib occour as apost surgical outcome you will be on warfarin anyway.

Just telling you facts, so please don't interpret this as me telling you what to do. Afterall if you have the facts you can make decisions.

Sometimes we just cant get away from reality (even if its not what we wanted)

 

[Bryan B]

Seems that they take a perfectly good valve and cut it out to replace the aortic and then need to put in a mechanical there anyway.

I just wanted to correct this, they do not use a mechanical valve in a Ross Procedure. They replace your bad aortic valve with your pulmonary valve, and they replace your pulmonary valve with a homograft pulmonary valve (I still have my homograft pulmonary valve and it's going strong). The pulmonary valve is under very low pressure compared to the other heart valves. This means two things: 1) a mechanical valve would be at very high risk for clotting in this position, and 2) a homograft or tissue valve will last a lot longer in this position for an adult (20+ years is not unusual). My surgeon has said it may never need to be replaced, and if it does it is already routinely done using a catheter procedure. My Ross failed for the same reason as Andrew's did, and I believe we both had our RP around the same time (his 2002 and mine 2004). I would ask your surgeon what improvements have been made to deal with possible aortic root dilation issues, as from what I have read that seems to be the most common reason for RP failure.

Like Andrew I have no regrets with my decision to get the RP done. I took a calculated risk and it did not work out for me, but I got 7 good years out of it at a time where I was traveling 90% of the time nationwide for my job. I was 43 at the time and didn't feel like a tissue valve would have lasted very long, so really I was deciding between the Ross or a mechanical valve. I ended up getting about what I probably would have gotten out of a tissue valve. In that 7 year span I got 7 years older and the advances in tissue valves improved enough that I chose a tissue valve for my 2nd surgery. My surgeon has been the lead surgeon on the percutaneous valve clinical trials at Duke and is positive that this will be the routine method for (uncomplicated) aortic valve replacement surgery if my current valve lasts for another decade (I saw him last month and he reiterated this). If I need another conventional OHS to replace my valve in the future I am OK with that too. When I chose tissue for my 2nd surgery I made the decision assuming I would need at least one more OHS , but at the same time hoping that technological advances might possibly spare me from having to go through another one.

 

[pellicle]

Hi
as I stated up front I know nothing much about the Ross only what I've read.

I just wanted to correct this, they do not use a mechanical valve in a Ross Procedure. They replace your bad aortic valve with your pulmonary valve, and they replace your pulmonary valve with a homograft pulmonary valve (I still have my homograft pulmonary valve and it's going strong).

Sorry, had a brain fart there I meant to say prosthetic, but fluffed. sorry about that. But anyway thanks also for the additional info, I didn't know it was a homograft, I had thought it was a tissue zenograft (bovine or porcine) but misread the pages.

FWIW my second OHS was a homograft and that got me twenty years. i did not choose it, back then we weren't all knowledgable informed consumers as we seem to be today, I just took what the medical experts said I should have.

As a summary I see the following main points:

* My Ross failed for the same reason as Andrew's did, .. aortic root dilation ... seems to be the most common

* I took a calculated risk and it did not work out for me,

* but I got 7 good years out of it at a time where I was traveling 90% of the time nationwide for
my job.

self testing of INR makes warfarin dosing less limiting in lifestyle than being a diabetic. I have just traveled from Australia to Finland and took my medicine and test kit with me (smaller than my shaving kit really) and things have just carried on without any issues.

This fellow (who seems to be pro Ross) has published the following pages (and a book)
http://www.heart-valve-surgery.com/heart-valve-surgery-complications.php
worth reading that page.

Mechanical prosthetics have a much higher success rates. You will find people who have had a mechanical for 30 years, you won't find anyone with an aortic tissue prosthetic valve that lasted as long. This is not my opinion or impression, this is a verifiable researchable fact. To quote from Dick's user profile:
Aortic valve replacement at age 31(Starr-Edwards mechanical "caged ball" valve) Aug. 1967.

That's 46 years from a mechanical that is the model T of the mechanicals. You will not get that from a tissue valve.

I'd call that a good decision. All choices come with risks, its up to us how we weigh such risks. Each has different values, each has different fears that drive those choices.

Ultimately each person must make their own decision, but I will add one last point. At fifty years of age, a period of ten years seems much less time than it did at 28 years old .. but you know, its still ten years.

 

[-andrew-]

I would be aware that I'd had surgery (well the scar kinda shows that too right?) so pretending that it isn't happening is just that: pretending.

So decisions on the basis of 'avoiding being aware of reality' are like going to the casino, where you really do know that the odds are in favour of the house.

I've not given too much thought to that part of my decision to have a Ross before, but thinking now, it was never a case of pretending I didn't have a heart condition, more a case of trying to put it as far down my list of concerns / thoughts as sensibly possible. My heart condition affected my lifestyle in that I tried even harder to live healthily, but for 10 years after the 1st operation it hardly featured in my daily concerns. Personally, I was worried that warfarin would prevent me from doing that, but after reading various discussions more recently, I am becoming more convinced that it would have been less of an issue than I'd thought.

Regarding the longevity of Ross Procedures and the freedom from re-operation, there are various stats available on the internet. A recent publication from the university of Toronto provides a good summary from their perspective -http://webcast.aats.org/2013/files/Monday/20130506_auditorium_1400_14.00%20Tirone%20E.%20David.pdf
This shows that almost 80% of patients that had a Ross were alive and free from re-operation after 20 years. The difference in mortality rates of those Ross patients was only marginally less than the general population. I've no idea how this compares to other valve replacement options.

Again, its such a personal decision and I don't think either a mechanical or a well-performed Ross would be a bad choice. Both have supporters both within the medical profession and patients.

Best wishes,

Andrew

 

[dfelder]

I had a ROSS in 1997 at age 16. My pulmonary lasted in the aortic position for just 12 years. My personal opinion: Why would you cut out two valves when only one has a problem?

 

[PeteCrev]

I had a ROSS in 1997 at age 16. My pulmonary lasted in the aortic position for just 12 years. My personal opinion: Why would you cut out two valves when only one has a problem?

What was the reasoning for having the ROSS in 1997? Im hoping 18 years later they might know a little more now then prior.

 

[Rick]

Pete,
I was diagnosed at 38 also. In terms of the Ross procedure, I found the best surgeon to speak with to be Dr. Paul Stelzer from Mount Sinai in New York. He had done, if I recall, over 400 of these procedures.

The Ross procedure has a success rate that is heavily influenced by the experience of the surgeon as it is a complex procedure. If you do go that direction, try to find someone who has done at least 200 or so of them.

Best of luck to you,

 

[Erik Sichra]

Hello guys!

Can someone try to convince me as to why with age 27 years old, loving to play tennis and basketball, and eating healthy, the Ross procedure will be more convenient for me than choosing a mechanical (or a tissue) valve?

Thanks! I appreciate it!

 

[PeteCrev]

Pete,
I was diagnosed at 38 also. In terms of the Ross procedure, I found the best surgeon to speak with to be Dr. Paul Stelzer from Mount Sinai in New York. He had done, if I recall, over 400 of these procedures.

The Ross procedure has a success rate that is heavily influenced by the experience of the surgeon as it is a complex procedure. If you do go that direction, try to find someone who has done at least 200 or so of them.

Best of luck to you,

Thank you Rick....I have an apt with him in November. He seems to be the best around from what I hear.

 

[PeteCrev]

Hello guys!

Can someone try to convince me as to why with age 27 years old, loving to play tennis and basketball, and eating healthy, the Ross procedure will be more convenient for me than choosing a mechanical (or a tissue) valve?

Thanks! I appreciate it!

From what I hear if you lead an active lifestyle the ROSS is the way to go. I am interviewing Dr. Stelzer in Manhattan in November. Word of mouth says he is the best if not the only game in town. I am heading in that direction because I am 38 years old and dont want to have any limitations of what I can do, and really dont want to be on a blood thinner also. Read the stats success rate is pretty good....pending the surgeon.

 

[iedude]

I was in your same position about 6-8 months ago.

Im 33 and just had the Ross Procedure performed 8 weeks ago. I did all the usual research into the latest technology, the valve types, surgeons and hospitals available to me. As mentioned the golden rule with the Ross Procedure is to find a surgeon that has performed it many times and is experienced in his field. Dr. Stelzer is who I would go to if I lived in the US.

I believe, the latest Ross Procedures Reinforce/wrap the Pulmonary Autograft to prevent aortic root dilation and although, some members here have had reops from the Ross procedure the statistics/results are very favourable. If the valve(s) failed tomorrow I wouldn't regret my decision, blame my surgeon or myself. In our game its a calculated risk unfortunately.

Feel free to PM if you have any questions.

 

[Erik Sichra]

From what I hear if you lead an active lifestyle the ROSS is the way to go. I am interviewing Dr. Stelzer in Manhattan in November. Word of mouth says he is the best if not the only game in town. I am heading in that direction because I am 38 years old and dont want to have any limitations of what I can do, and really dont want to be on a blood thinner also. Read the stats success rate is pretty good....pending the surgeon.

Thanks for the reply Pete!

Here in Vienna I have also found a Doctor, who seems is the most prepared and experienced regarding the Ross procedure, Dr. Günther Laufer. I keep thinking of the fact of being reoperated after a while...instead of taking anticoagulants...hope Ross is the best decision! Good luck!

 

[Erik Sichra]

I was in your same position about 6-8 months ago.

Im 33 and just had the Ross Procedure performed 8 weeks ago.

Thanks for your reply! How do you feel 8 weeks after the OP? As if you had a new heart?

I did all the usual research into the latest technology, the valve types, surgeons and hospitals available to me. As mentioned the golden rule with the Ross Procedure is to find a surgeon that has performed it many times and is experienced in his field. Dr. Stelzer is who I would go to if I lived in the US.

By the way, I have found a surgeon here in Vienna, who seems to be the most experienced one, who has done this Ross procedure since 1994, 200 Ross OP more or less.I think he is the surgeon to go to.

I believe, the latest Ross Procedures Reinforce/wrap the Pulmonary Autograft to prevent aortic root dilation and although, some members here have had reops from the Ross procedure the statistics/results are very favourable. If the valve(s) failed tomorrow I wouldn't regret my decision, blame my surgeon or myself. In our game its a calculated risk unfortunately.

Why wouldnt you regret of your decision? In other words, why did you choose the Ross procedure? And, what do you mean with calculated risk? That this OP is riskier?

Feel free to PM if you have any questions.

Thanks for your cooperation dude! Take care!