Getting confused - Questions re: Ross and other options - Severe AR

[caligirllife]

Hi all,

Forgive me, I am new to the forum and quickly reading and trying to learn from you all. I am a wife/caregiver whose 51 yo husband has AR that is deemed severe through Echo and TEE. He has a tricuspid valve. He is noticing a few symptoms. He had researched and was attracted to the Ross procedure. We have met with a top surgeon and came away feeling confident. However, I feel confused now partly because of not understanding the time expected for each valve and partly because my husband's original cardiologist whom he saw for an angiogram this week flat out said he was not a candidate for Ross. (noting this has not been a longstanding relationship w/ this cardiologist). He said things like "You won't be getting what you think you are." I am not a fan of his, but don't want to discard his words either. So, I am taking another look at Ross.

My questions...
1. choosing to replace the pulmonary valve with a freestyle tissue valve has what life expectancy of the valve? My notes from our convo w/ the surgeon say 12-15 years, is that correct? Are those numbers the same if the valve was in the aortic position?

Thanks in advance. I will be reading voraciously trying to make sure I am not missing anything.

 

[Superman]

Welcome to the forum. The short answer is that in my experience on these forums you won’t find a lot of fans of the Ross procedure

You take one bad valve and make two potentially bad valves out of it. The pulmonary valve evolved in the pulmonary position and can handle the pressure there. The aortic position will wear it out faster. The tissue valve they place in the pulmonary position will also wear out. Then in ten, fifteen, maybe twenty years if you’re lucky, both valves will need replacing again. And perhaps not at the same time.

If I understand correctly, the thought process was that your own native tissue could handle the aortic position better than a porcine or bovine valve. And the porcine or bovine valve would last longer in the less demanding pulmonary position. But if it doesn’t last a lifetime, I guess I don’t understand the point.

Whether mechanical or tissue or donor, why not just replace the one bad valve? If something changes down the road, perhaps replace it again? Perhaps a catheter valve will be possible? Or perhaps go mechanical and never have to replace it again? Just manage a pill a day. All seem like better options to me than trading one bad valve for two.

 

[MdaPA]

choosing to replace the pulmonary valve with a freestyle tissue valve has what life expectancy of the valve? My notes from our convo w/ the surgeon say 12-15 years, is that correct?

According to Cleveland Clinic,
"The pulmonary autograft valve has a good chance* of being a life-lasting solution for the aortic valve.
*Our qualified guess is that the pulmonary autograft will last a lifetime in at least half of Ross procedure patients."

Aortic Valve Surgery in the Young Adult Patient

(note "Young Adult Patient" in the title of the video where your husband is 51 years old).

FWIW, my wife got 20 years out of her porcine valve in the pulmonary position and her pulmonary valve in the aortic position after her ROSS procedure but they were replaced when she had her MV replaced. Her porcine and pulmonary valves showed signs of leakage and calcification but they were only replaced because they were in there replacing her bovine MV (i.e. they would have gone longer but who knows how much longer).

Did you see "Watch the Ross Procedure Webinar?"
Free eBook & Video: Ross Procedure Advantages for Aortic Valve Patients

Also consider a good aortic valve surgeon who may be able to repair the valve instead of replacing it.

 

[MdaPA]

He had researched and was attracted to the Ross procedure.

Why was your husband attracted to the Ross procedure?

my husband's original cardiologist whom he saw for an angiogram this week flat out said he was not a candidate for Ross. (noting this has not been a longstanding relationship w/ this cardiologist). He said things like "You won't be getting what you think you are."

Why did the cardio say he was not a candidate for the Ross?

We have met with a top surgeon and came away feeling confident.

Did the surgeon discuss the pro and cons of the Ross procedure and if your husband was a candidate or not? Did the surgeon also discuss the possibility of having the AV repaired instead of replaced as well as replacing with a mechanical valve?

 

[Chuck C]

Hi all,

Forgive me, I am new to the forum and quickly reading and trying to learn from you all. I am a wife/caregiver whose 51 yo husband has AR that is deemed severe through Echo and TEE. He has a tricuspid valve. He is noticing a few symptoms. He had researched and was attracted to the Ross procedure. We have met with a top surgeon and came away feeling confident. However, I feel confused now partly because of not understanding the time expected for each valve and partly because my husband's original cardiologist whom he saw for an angiogram this week flat out said he was not a candidate for Ross. (noting this has not been a longstanding relationship w/ this cardiologist). He said things like "You won't be getting what you think you are." I am not a fan of his, but don't want to discard his words either. So, I am taking another look at Ross.

My questions...
1. choosing to replace the pulmonary valve with a freestyle tissue valve has what life expectancy of the valve? My notes from our convo w/ the surgeon say 12-15 years, is that correct? Are those numbers the same if the valve was in the aortic position?

Thanks in advance. I will be reading voraciously trying to make sure I am not missing anything.

Welcome to the forum.
I would agree with the comments made by Superman. I am about your husband's age, just turned 54, and had aortic valve surgery 13 weeks ago. When considering the Ross procedure, it appears that you are taking a one valve problem and creating a two valve problem.
Arnold Schwarzenegger was about your husband's age when he opted for a Ross Procedure in 1997. This eventually led to him needing to have both his pulmonary and aortic valves replaced later on:
Ross Procedure: 1997
Pulmonary valve replacement surgery: 2018
Aortic Valve surgery: 2020

https://www.heart-valve-surgery.com/arnold-schwarzenegger.php
I did not like the prospects of getting three valve surgeries and so opted for a mechanical valve that would give me the best chance to not need a reoperation. I'm on warfarin, which is now just part of my daily routine of taking a pill. No big deal.

I went with a St Jude, as I like the fact that they have remarkable durability, as demonstrated in this 30 year study:

Thirty-year experience with a bileaflet mechanical valve prosthesis

https://www.jtcvs.org/article/S0022...on,and mitral valve replacement, respectively.

Good luck with navigating the choices ahead and wishing your husband a successful operation and a speedy recovery.

 

[dick0236]

FWIW.....these novel surgeries seemingly may require at least one additional procedure during your husband's lifetime. .....maybe in his late 70s or in his 80s and that won't be fun. I am 85 and still living with the valve I received when I was 31 and my docs tell me it will outlast me. A simple mechanical valve replacement should last his lifetime with little interference with his life or lifestyle.

 

[caligirllife]

Thank you to everyone for replying. I have read a lot today and listened to a lot.

Welcome to the forum. The short answer is that in my experience on these forums you won’t find a lot of fans of the Ross procedure

You take one bad valve and make two potentially bad valves out of it. The pulmonary valve evolved in the pulmonary position and can handle the pressure there. The aortic position will wear it out faster. The tissue valve they place in the pulmonary position will also wear out. Then in ten, fifteen, maybe twenty years if you’re lucky, both valves will need replacing again. And perhaps not at the same time.

If I understand correctly, the thought process was that your own native tissue could handle the aortic position better than a porcine or bovine valve. And the porcine or bovine valve would last longer in the less demanding pulmonary position. But if it doesn’t last a lifetime, I guess I don’t understand the point.

Whether mechanical or tissue or donor, why not just replace the one bad valve? If something changes down the road, perhaps replace it again? Perhaps a catheter valve will be possible? Or perhaps go mechanical and never have to replace it again? Just manage a pill a day. All seem like better options to me than trading one bad valve for two.

That seems to be the main argument people make against Ross I have discovered. I do think there is more management than a pill a day. It is actually INR level testing and planning before any future procedure-related or not to the heart.

According to Cleveland Clinic,
"The pulmonary autograft valve has a good chance* of being a life-lasting solution for the aortic valve.
*Our qualified guess is that the pulmonary autograft will last a lifetime in at least half of Ross procedure patients."

Aortic Valve Surgery in the Young Adult Patient

(note "Young Adult Patient" in the title of the video where your husband is 51 years old).

FWIW, my wife got 20 years out of her porcine valve in the pulmonary position and her pulmonary valve in the aortic position after her ROSS procedure but they were replaced when she had her MV replaced. Her porcine and pulmonary valves showed signs of leakage and calcification but they were only replaced because they were in there replacing her bovine MV (i.e. they would have gone longer but who knows how much longer).

Did you see "Watch the Ross Procedure Webinar?"
Free eBook & Video: Ross Procedure Advantages for Aortic Valve Patients

Also consider a good aortic valve surgeon who may be able to repair the valve instead of replacing it.

Thank you very much for the webinar. I had not seen it but watched it all today. This highlights the reasons why we were first attracted to the Ross procedure. The longevity they show is remarkable. Another reason I am personally attracted I have seen mentioned before and is the "type" of event that could occur to require reoperation. The Ross procedure also seems to provide a better ability to exercise at peak levels. My husband has been a marathoner in the past and would enjoy getting back to that. With mechanical, it seems the adverse event happens rather quickly and has some very catastrophic outcomes at times. On the other hand, if something adverse occurs with the Ross procedure it is usually a planned procedure to repair.

We have consulted with a very qualified surgeon for the Ross procedure. He feels DH is a candidate and needs surgery in the next to 3-6 months. We are blessed to be in the same area as this surgeon. His expertise and experience are top-notch so that part of the equation should be fine.

Why was your husband attracted to the Ross procedure?


Why did the cardio say he was not a candidate for the Ross?


Did the surgeon discuss the pro and cons of the Ross procedure and if your husband was a candidate or not? Did the surgeon also discuss the possibility of having the AV repaired instead of replaced as well as replacing with a mechanical valve?

Attracted because of a few reasons. Possibility of a lifelong solution, better outcomes, exercise endurance, no need for blood thinners, no constant monitoring, benefits of his own valve being in the aorta position, and actually not hearing the mechanical valve is a benefit to both of us.

Honestly, I am not sure why the cardio said he is not a candidate. On appointment, he said they only do Ross for children. I am going to make this claim and it is sad to feel this way. This cardio is an owner of the hospital that he works in. This hospital does not have a highly qualified Ross surgeon. This cardio even complained about my husband seeing a surgeon out of his hospital for an opinion. He said, we generally don't mix hospitals. Well, I will be the first to say, WE (my husband and I) absolutely will MIX hospitals and go to wherever we can get the best care. This was a very tense thing for him to say right before performing an angiogram on my husband. He will not be seen again by us. So, I am going to go with him being uneducated or money-hungry as the reason he thought my husband was not a candidate. He never once stated why he was not a candidate and I was not engaging in the conversation right before the procedure.

As a side note, we have also scheduled a Ross consult with another top surgeon who wanted to see all echo's and TEE before scheduling. He obviously agrees that husband is a candidate for Ross or he would not be scheduling an appt, which he has.

 

[Superman]

That’s where you won’t get any disagreement here. Absolutely shop around if you can. I agree with your conflict of interest view.

I have been on warfarin since I was 17. Over 30 years now. I absolutely will take warfarin over repeat operations any lifetime. That said, it didn’t prevent me from having a second open heart as I had to have an aneurysm repaired when I was 36. Given the chance to change out hardware, I stayed with mechanical and warfarin. No way do I want a third. I’m only 48 now. Need this set up to last another 30 - 50 years!

 

[MdaPA]

The Ross procedure also seems to provide a better ability to exercise at peak levels. My husband has been a marathoner in the past and would enjoy getting back to that.

While this might be a good reason to go with a Ross, there are people with mechanical valves that also run marathons.

Marathon Running

With mechanical, it seems the adverse event happens rather quickly and has some very catastrophic outcomes at times. On the other hand, if something adverse occurs with the Ross procedure it is usually a planned procedure to repair.

I would say that the chance of your husband at age 51 having an intervention/re-op on both his PV and AV after a ROSS significantly outweighs the rare chance of having a catastrophic outcome/failure of a single mechanical valve during his lifetime. Additionally, a Ross procedure is a higher risk/more complicated surgery and subsequent interventions/re-ops would bring further risks/complications.

This cardio even complained about my husband seeing a surgeon out of his hospital for an opinion. He said, we generally don't mix hospitals.

Suggest not seeing this cardio again.

we have also scheduled a Ross consult with another top surgeon who wanted to see all echo's and TEE before scheduling. He obviously agrees that husband is a candidate for Ross or he would not be scheduling an appt, which he has.

Suggest a consult with a non-Ross surgeon to get another view point, specifically with one that specializes in AV repair.

 

[pellicle]

I do think there is more management than a pill a day.

Not really, only testing, making any response to that rest and making sure you took the pill.

It is actually INR level testing and planning before any future procedure-related or not to the heart.

I don't know what you mean, but INR testing is related to anticoagulant therapy that you commence after surgery.

INR is the number that tells you the level of anticoagulation you are at and you need to stay between 2 & 3

It's usually not hard and many people report something like this

"I was very nervous about the drug going into my surgery, and most of it was generated by Google. I think the best advice I could give to someone looking into a surgery would be to disconnect from the internet and listen to your doctors as you ask lots a questions and get lots of answers, as a lot of misinformation and biased information is available at the search engines. I also know that if someone had taken away my internet I would have gone ballistic, so I understand where you are at!"

 

[pellicle]

Hi and welcome

My questions...
1. choosing to replace the pulmonary valve with a freestyle tissue valve has what life expectancy of the valve? My notes from our convo w/ the surgeon say 12-15 years, is that correct? Are those numbers the same if the valve was in the aortic position?

I am no friend of the Ross and would join Supermans view that why stuff up a prefectly healthy valve to fix a diseased one leaving two diseased valves?

There are a few publications which support it, which often rely on the reader not being very critical. Heres one

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5337212/
in that the author either lies or is ignorant of (not sure which is worse) the cryopreserved homograft (which I have had) when they say :

The Ross procedure has several advantages. It is the only operation that allows replacement of the diseased aortic valve with a living substitute, thus allowing adaptive remodeling ​

​

because my cryopreserved homograft (from some one else) did exactly that. I note they don't go on to tell you about the disadvantages in the future because that would be beyond the 10 year scope of interest the surgeon has.

The author makes the observations

Patients undergoing the Ross operation enjoy enhanced quality of life compared to those undergoing mechanical AVR (10), and a number of recent studies have demonstrated superior long-term outcomes compared to other valve replacement option​

but those enhancements are based on specific criteria. You'll note they don't have "a number of recent studies have demonstrated superior long-term outcomes compared to .." mechanical valves.

That article goes on to mention

the Ross procedure (pulmonary autograft replacement), was first described by Donald Ross in 1967​

and it just may be that things have improved since then and that its a surgery that should be considered in highly specific cases (which I can't quite imagine what they are right now).

benefits of his own valve being in the aorta position,

a valve that was designed for an entirely different set if pressures.

Testing is not onerous ... its a 5 min once a week thing for me

 

[Superman]

BTW, please don’t take some of the responses as telling you what you should or shouldn’t do. Absolutely do what your husband is most comfortable with and be supportive of that.

I can’t speak for others, but I suspect many have views in line with mine. The only reason we respond to many of the warfarin concerns the way we do is in an effort to dispel any myths and assure people that it isn’t the boogeyman that it’s often portrayed to be. Hopefully hearing from folks like us with mechanical valves who’ve lived with them for 10, 20, 30, even over 50 years will help with some of that.

I’m no marathoner, but I have a 25k under my belt. I run, bike (including mountain biking when I was younger), hike, ride horses, ski, water sports. I’ve never given much thought to warfarin when choosing activities. Planning to through hike the Grand Canyon next year and stay at the bottom. I just bring my drugs along with.

As an aside, I already had a mechanical valve when I started dating my wife. It ticks. Not a big deal. I hear it now, but it doesn’t preoccupy me. She can hear it too, but I promise my snoring bugs her more . Heck, it’s all I’ve known for what getting close to 2/3’s of my life now.

 

[Chuck C]

This cardio even complained about my husband seeing a surgeon out of his hospital for an opinion. He said, we generally don't mix hospitals. Well, I will be the first to say, WE (my husband and I) absolutely will MIX hospitals and go to wherever we can get the best care. This was a very tense thing for him to say right before performing an angiogram on my husband. He will not be seen again by us.

You have made a wise decision not to see this cardio again. Second opinions should be encouraged, and to create such a tense moment just before a procedure- very poor form.

 

[pellicle]

BTW, please don’t take some of the responses as telling you what you should or shouldn’t do. Absolutely do what your husband is most comfortable with and be supportive of that.

Agreed @caligirllife all we can do is inform as we see things.

 

[Chuck C]

That seems to be the main argument people make against Ross I have discovered. I do think there is more management than a pill a day. It is actually INR level testing and planning before any future procedure-related or not to the heart.

You're doing the right thing in seeking second opinions and seeking opinions on this forum.

A few comments. I've been on warfarin for only about 13-14 weeks, but it really is not a big deal. I self test and record my INR, and determine if I need to tweak my dose. It takes about 5 minutes tops, about once a week.

I have to comment on the ticking, as many bring this up as an objection, as you do. I have become use to it and it does not bother me at all. Others can't hear it unless they put their head on my chest, so my wife is the only other person who has heard it. She actually said that she likes it and that she finds it comforting to her.

And, I am very active. I hike up steep mountains and run down, do all kinds of cardio at the gym and lift weights. I'll be returning to Brazilian Jiu Jitsu soon as well.

I felt the Ross was not right for me. However, your husband may decide that it is the right procedure for him. Please know that, even if many here don't agree with the choice, whatever you decide that you will have our total support and we will be here for your husband during his recovery. The choice is for your husband and you to decide. You make the choice that lets you sleep well at night and then don't look back.

 

[MdaPA]

I do think there is more management than a pill a day. It is actually INR level testing and planning before any future procedure-related or not to the heart.

I don't know what you mean, but INR testing is related to anticoagulant therapy that you commence after surgery.

I think what caligirlife means here is that once on an anti-coagulation med like coumadine/warfarin, pre- and post-operative management of INR (e.g. bridging) is often necessary for many invasive procedures (surgical, dental) to prevent unwanted/dangerous bleeding.

There is some merit in taking this into consideration when making the decision to go on a lifetime of anti-coagulation as it brings forth additional risks/concerns:

e.g.
1. Increases the risk of bleeding/clotting before and after the procedure.
2. Is "bridging" prescribed and performed properly (most in the forum might be able to do this but what about those with cognitive decline)?
3. Risks with the bridging therapy (heparin/lovenox).
4. Some may even put off/skip procedures to avoid all this (e.g. dental work, colonoscopy).

 

[Superman]

4. Some may even put off/skip procedures to avoid all this (e.g. dental work, colonoscopy).

I’ve had to bridge a few times with Lovenox. Gallbladder surgery, a second open heart surgery, just two that pop into my head.

I’ve also had to put off one procedure that let to additional complications. Mainly financial. We had to repurchase a car seat, stroller, start a new college savings fun, grocery bills went up, etc. But he’s an awesome kid and the delay was meant to be!

 

[pellicle]

management of INR (e.g. bridging) is often necessary for many invasive procedures (surgical, dental) to prevent unwanted/dangerous bleeding.

If you read recent posts on that topic here I'd argue that such is increasingly not the case and has become outdated technique (a bit like "don't eat greens"). My own experiences

The one where bleeds are most dangerous
https://cjeastwd.blogspot.com/2017/12/perioperative-management-of-inr.html
You'll perhaps find the dissection and analysis of that journal article interesting.

In light of that:

Some may even put off/skip procedures to avoid all this (e.g. dental work, colonoscopy).

That would be foolish.

Then this one
https://cjeastwd.blogspot.com/2020/10/another-example-small-procedure.html
We are learning how the past was overly conservative and uninformed in the risk management. There are also numerous responses recently here indicating no problem with extraction at dentists too.

There is some merit in taking this into consideration when making the decision to go on a lifetime of anti-coagulation as it brings forth additional risks/concerns:

Yes of course, but the analysis should be based on reliable information, not exaggerated and with an eye to your actual situation.

My view is that the risks associated with proper management are significantly lower than non-compliance.

Again I restate that the Ross has no advantage to a cryopreserved homograft and additionally does not harm the tricuspid valve. Homograft has been performed since the 1990s. In 1967 it may have had distinct specific advantages, however today to advocate it is marginal. For instance I have a 1989 4WE, I love it, but I wouldn't advise a new car buyer to go for it now.

 

[MdaPA]

We are learning how the past was overly conservative and uninformed in the risk management. There are also numerous responses recently here indicating no problem with extraction at dentists too.

There are certainly opportunities to learn from the past to reduce the risks associated with "bridging" or "not-bridging" for planned procedures and this is a good forum to communicate that (especially with you sharing your research and experiences), however, I think from the OP's main point, this management would be a moot point if her husband went with a Ross.

Again I restate that the Ross has no advantage to a cryopreserved homograft

In 1967 it may have had distinct specific advantages, however today to advocate it is marginal.

This is not the case for young patients, especially in children: "At no time was the value of the Ross procedure in children seriously challenged.". However, it looks like there is a recent push to reconsider the use of the Ross in adults:

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

Ross for Valve Replacement in AduLts Trial - Full Text View - ClinicalTrials.gov

 

[pellicle]

This is not the case for young patients, especially in children

please explain how that is not a marginal case (given age distribution of AVR) ... also, please check again the context of the age of the person we're discussing this with. Surely support for a valve surgery should take into account them not just that you had it (or your wife). Voiced support for a surgery type should take that into account.

no?

However, it looks like there is a recent push to reconsider the use of the Ross in adults

there is also a push to build more coal fired power ... there are often more interests at work than "what is best for the patient" ... sometimes its about what is best for the surgeons personal preference.

from you link:

The authors again stir up the controversy about optimal strategies and options for younger adults who require replacement of their aortic valve.​

...​

The study does not provide data on patient selection or the advisability of performing the Ross procedure in patients with unicuspid or bicuspid aortic valves, pure aortic regurgitation, or a large aortic annulus​

...​

my underline

the Ross procedure can no longer be disregarded as an option for younger patients who would like to, should, or must avoid anticoagulation and who have limited size roots in which any prosthesis will provide worse hemodynamics​

but I didn't see any significant evidence for this assertion.