Ross procedure or mechanical aortic valve for reoperation

[EMJEF]

Hi,

I had a aortic valve replacement in 1986 and had a St Jude mechanical valve. For the last few years my consultant has discussed reoperation with me and I have been told that this is really important now in the last 6 years - since the birth of my son. The hospital where I go for my check ups are big advocates of the Ross Procedure and are encouraging me to go this way with my surgery. I am concerned as I have never felt like the mechanical valve was an issue for me and taking warfarin has been part of my life for 34 years. My surgeon has said the Ross procedure or a mechanical valve replacement are of similar complexity and that he would recommend the Ross procedure however I am unsure as to whether having two valves moved is really going to be as complex as just replacing one. I know I am probably sounding like I'm rambling but I am absolutely terrified but know if I don't have the surgery it could have fatal consequences.

Does anyone have experience of Ross procedure following a mechanical aortic valve and can explain to me why they chose this?

Thank you

 

[MdaPA]

my consultant has discussed reoperation with me

What is the issue with your aortic mechanical valve why are they are suggesting replacement? If it does need to be replaced, why not keep it simple and just replace with another mechanical valve?

The ROSS procedure is usually recommended for younger people (you didn't say how old you are) to avoid taking long-term anticoagulant medications which doesn't sound like the case for you. So why are they recommending a ROSS procedure over a mechanical valve for you? Because they are "big advocates of the ROSS procedure" is not enough of a reason. A ROSS procedure is a more complex and longer surgery as they are replacing both the AV and PV. You then will be going from single valve to a multi-valve disease and potentially looking at further surgeries down the road (OHS or possibly TAVR) as the biological valves will eventually require attention. It can then get kind of complex if they don't fail at the same time. How long are they telling you can expect from AV and PV to last after the ROSS?

I would get a 2nd opinion.

 

[dick0236]

I am also curious as to why the St. Jude valve seems to be failing. It is unusual for a mechanical valve to fail after only 34 years. If you are comfortable with living with a mechanical valve I would think another mechanical would be a better solution than a procedure that would, almost certainly, require another surgery down the road. I'd want a second opinion.

 

[EMJEF]

I’m 38. Had the original surgery when I was 3. I was given the largest valve they could give me at the time (size of a large adolescent) but always the potential that I could outgrow it. Think the pregnancy pushed it over the edge.

The surgeon has said they will do mechanical or Ross but that their recommendation would be Ross. But I’m thinking I would be happier with mechanical as it’s why I’m used to and from what I’ve read on here I have more potential for not having further surgery.

 

[pellicle]

Hi
(and welcome to the group too)

as I've alluded to in my previous reply to you on another topic line my view is that for you with what I see of your history another mechanical would be the best option (we already know you're coping well with warfarin).

I voiced this here: Schwarzenegger had another OHS

and have of course said the same elsewhere here on various occaisons.

https://www.valvereplacement.org/threads/ross-vs-on-x.857132/post-857165
I made no input on this one:
https://www.valvereplacement.org/threads/my-experience-with-the-ross-procedure.43045/

 

[dick0236]

Thanks for clearing up only getting 34 years out of your valve that was implanted at age three. It is understandable that a valve implanted into a "baby" would need replacement in an adult at 38.

I'm a big believer in NOT having any more OHS than needed. A mechanical valve would have a good chance of lasting your lifetime. A Ross Procedure, from the little I know, would require surgery, perhaps in your senior years...... ....and, as a senior, I would not want to go thru a serious OHS.

Down the road, if they ever invent the MAGIC BULLET, either the mechanical valve or the Ross could be explanted in favor of a magical cure.

 

[Chuck C]

"My surgeon has said the Ross procedure or a mechanical valve replacement are of similar complexity and that he would recommend the Ross procedure "

The Ross Procedure is complex. It is hard for me to fathom that anyone would compare a mechanical valve replacement with the Ross Procedure as similar in complexity.

You had great success with your mechanical valve for the past 34 years and have managed taking warfarin for all these years without problems.
" I am concerned as I have never felt like the mechanical valve was an issue for me and taking warfarin has been part of my life for 34 years "

The mechanical valve, despite being placed at the young age of 3, served you very well. Unless there is some missing piece to the information puzzle here, it does not seem logical to switch to a complex procedure that could lead to issues with two valves down the road. I would suggest getting a second opinion. Based on what you have presented, if it were me, I believe I would lean heavily towards mechanical and would need to hear some very strong arguments as to why going with a more complex surgery with multiple valves was a better bet for long term survival.

 

[EMJEF]

The surgeon has said that if I prefer to stick with mechanical then he would be happy to do that just that he recommends Ross procedure and it seems that this is mainly due to lifestyle and not having to take warfarin.

I am going to say that my decision is mechanical as I have never had any issues prior to my pregnancy and I am happy monitoring my anti-coagulation as I’ve done it for over 3 decades.

Thank you for your input. Coming on this forum has made me feel a lot more positive and made me believe that I will come through this surgery; prior to finding this forum I think I just assumed the worst would happen and felt like I was being pressured into a procedure I didn’t want. It was only when I thought about my last meeting with the surgeon in July 2019 (should have had the surgery last year but Covid put a stop to that) that my husband reminded me that he had said I had the choice between the procedures despite his recommendation being Ross procedure.

 

[pellicle]

recommends Ross procedure and it seems that this is mainly due to lifestyle and not having to take warfarin.

this seems to be the common factor. But its in my view very short sighted for many. There are of course a very small percentage for who this is actually important, but then a tissue prosthetic will do as well (statistically) and not ruin a perfectly functioning tricuspid valve (which as we saw in Arnies case) eventually require replacement in "active lifestyle" people too ... which essentially means while you might pull the wool over the patient eyes with "not much more complexity" in the first OHS (ahh , ahhhh ... bussshhhit ... gesundheit ) opens up a can of worms years down the track.

I am going to say that my decision is mechanical as I have never had any issues prior to my pregnancy and I am happy monitoring my anti-coagulation as I’ve done it for over 3 decades.

wait, what ... youve had a pregnancy on Mech too ... wow ... you do have some stories to tell (and its a question which is asked here a bit actually)

hats off again

 

[Woodcutter]

The warfarin "issue" is my understanding as well. A recent (11/20) from Marey & Said (U of Minnesota) concluded "Ross Procedure After Previous Aortic Valve Repair in an Adult" with this sentence : "Finally, the Ross procedure remains the best procedure for young patients with active lifestyles due to the excellent hemodynamics, lack of anticoagulation, and absence of patient-prosthesis mismatch."

I only have one second hand anecdote on the Ross choice but it, in a backwards kind of way, may be useful or interesting. I've run many miles and races over the years and a couple years back had a couple mile chat with "The Obsessed Runner". Active folks might enjoy his blog by that name which goes back a long time . . . as he has been running many decades. What he shared with me was that he had the Ross after he fell to the ground while in the lead pack of a medium sized international marathon. Diagnosed with an aortic valve problem that he was unaware of. (Bicuspid I believe). He shared that he specifically opted for the Ross - about 35 years ago at ~ 30 - because he did not want to be on warfarin. As far as I know, to this day he remains satisfied with his choice.

I in turn shared that my choice was (sort of) 'the opposite'. In some sense my experience was like you EMJEF in that I had been on warfarin previously (happened to be first for a pulmonary embolism and later for AFIB) but I had no concerns or issues with anti-coagulation nor self-monitoring. My valve issue was mitral and it took two surgeries so the key factor for me was just as simple but very different: I did not want to sign up for another surgery . . . so mechanical it was. Seriously, for me, that part of the conversation (tissue vs. mech) with my surgeon was as brief as one can imagine.

In summary: as with many things, the relative importance of the various factors can and often does vary dramatically between individuals.

 

[EMJEF]

this seems to be the common factor. But its in my view very short sighted for many. There are of course a very small percentage for who this is actually important, but then a tissue prosthetic will do as well (statistically) and not ruin a perfectly functioning tricuspid valve (which as we saw in Arnies case) eventually require replacement in "active lifestyle" people too ... which essentially means while you might pull the wool over the patient eyes with "not much more complexity" in the first OHS (ahh , ahhhh ... bussshhhit ... gesundheit ) opens up a can of worms years down the track.



wait, what ... youve had a pregnancy on Mech too ... wow ... you do have some stories to tell (and its a question which is asked here a bit actually)

hats off again

Yep. Now have a beautiful 6 year old boy. Had to inject twice daily with tinzaparin from 4 weeks to about 4 weeks after he was born. No issues during pregnancy and he was delivered a healthy 8lb 8oz at 38 weeks by planned c section. Did have a blood clot 3 days later which required returning to theatre and had to stay in hospital for a week to get my anti-coagulation stable but all turned out fine in the end.

 

[spartangator]

Welcome @EMJEF. Thanks for sharing and for the updates.

Just want to add another vote for the second opinion. As someone who had a Ross procedure and am very happy with it, that seems like a curious choice here, particularly since you're already using to managing warfarin.

Why change the whole pattern when an equipment upgrade will do? Regardless, we're here and happy to support.

 

[EMJEF]

I am going to speak to my surgeon about my preference of a mechanical valve as it’s what I’ve been used to for so long. I know he is happy to do either just feels Ross would be better regarding lifestyle, no warfarin etc. I’m not bothered about that. Happy to be on anti-coagulation the rest of my life.

 

[pellicle]

he is happy to do either just feels Ross would be better regarding lifestyle

this is a common notion which is unsubstantiated by much in the way of a close analysis.

If you were a boxer or similar contact sport person then yes, being on warfarin will be a detriment due to the very high occurence of small brain bleeds they receive. However for almost every other "active life" having a mechanical is such a positive (due to the inevitable Structural Valve Degradation (SVD) that activity brings to highly active younger people. SVD starts from about 10 years and becomes "reoperation time" within 15 (at most) for younger patients

Remember

Keep in mind that self testing and (if you aren't already) self management frees you from the leash of a lab, you can travel anywhere and take your gear with you and test anywhere (as I do)

The primary issue with a mechanical should be if warfarin is contra indicated. But <CynicalHat> that is subverted by the groups who want a bigger market share in a sector they really have no business being in. </CynicalHat>

an article I post from time to time (and thanks to @nobog for making the link handy this time)

https://www.newsweek.com/my-turn-climbing-everest-bionic-heart-99749
Best Wishes

 

[pellicle]

Lastly I'll suggest (even though you're an old hand already) that the analysis of a paper I do in this blog post:

https://cjeastwd.blogspot.com/2014/01/heart-valve-information-for-choices.html
is worthwhile reading ... it concerns the actual life expectancy of valves.

A segment:

Ok, so lets go onto the data for the group who (according to conventional views) should have the least to gain from a mechanical, that is those who were 75 years of age and older at surgery.​

​

​

yet it would seem looking at the data that they gained more. We see that after 10 years the mechanical valve recipients kick up substantially higher in survival rate. Sadly the Pericardial group drops to zero. Which I expect means that they died. Mechanical still has survivors at 15 years.​

remember, the devil is always in the details (not the summary)

 

[-andrew-]

Hi, looks like you've probably made your mind up to focus on the mechanical route but thought I'd chip in briefly as a previous Ross recipient. For me, a big driver behind having the Ross was to aim to minimise the day to day requirements I'd have to pay attention to as much as possible. I wasn't concerned about the potential risks associated with anticoagulation - it was simply the disturbing effect it would have on my day to day life (not necessarily a sensible, calculated approach but I'm just being honest!). Leading up to my first op there was some confidence that the modern Ross procedure could last a very long time and so that combined with avoiding regular testing and anticoagulation convinced me to go that route. For 11 years, it achieved it's objective perfectly and I was able to partake in all the sports I wanted to with little to no consideration of my heart condition (I enjoy sports like snowboading where a head injury is distinct possibility, especially if attemping to perform beyond your ability - like in my case ). I also got to a relatively high level within triathlon, representing my country at an age group level which may or may not have been possible with a mechanical valve - I have no idea about that. More recently, I've had what I'd (arguably) call bad luck and contracted endocarditis first on my aortic valve and more recently on my replaced pulmonary valve (in the latter case that bad luck would not have been possible had that valve not been replaced during the Ross, i.e. had I elected for a single valve surgery). I don't regret the decision to have a Ross, even with hindsight. I'd make the same decision again but hope to have better luck! BUT - if someone has already successfully and happily managed anticoagulation for years and has no burning desire to become a high level athletic competitor then why go for the Ross? It was always described to me (in 2002) as a more complicated operation and took a lot longer than my subsequent surgeries. Sounds like your heading in the right direction - best wishes with it all.

 

[EMJEF]

Thank you to everyone who has shared their experiences. It has been really interesting to see and read the different reasons everyone had for their choices. I definitely think that after so long managing my anti-coagulation well that changing from a mechanical valve seems like a wrong decision for me. Once I get the call from the hospital to discuss my decision I will explain that I want to stick with mechanical.
Thanks again everyone.

 

[cooperman]

I had the Ross procedure 20 years ago. I also just had both valves replaced again- the aortic with an On-X, and the pulmonary with another homograft. I am forty now.

If I had to do it again, I would either have just had the bad aortic valve replaced with a mechancal years ago and adjusted my lifestyle then, or I would have gone with another tissue valve this time around. I know this sounds cotradictive, but I enjoyed a completely normal life and was living in a third world country when I needed my second surgery. Now I have had to relocate back to the USA and basically reassimilate and adjust to life here because of the necessary checkups, the warfarin testing, and ongoing insurance coverage. Of course, there are no guarantees that I would have been able to return to my old life with a tissue valve, and I will never know for sure. I am grateful that things are going well and that I will likely not need another surgery for decades (and that for the pulmonary valve, not the aortic, which is mechanical now as mentioned). I have found warfarin management to be quite easy. The biggest adjustment for me is being extra careful and not bruising or cutting myself while on my job. But living on a shoestring and volunteering in another country is not in the cards anymore, which saddens me.

My advice is that if you are on warfarin already and don't have a problem with the mechanical valve I would definitely stay with a mechanical valve. Pulling the pulmonary valve into the picture will certainly complicate things later. If it will not significantly impact your lifestyle, why change the setup?