Ross Procedure Pros and Cons

[Ion Manea]

Hello Everyone

I am a 48 years old male, having congenital bicuspid aotic valve with severe stenosis (7.2cm2) and no significant symptoms.

I was supposed to be in surgery by now (actually my first cardiolog was pushing me for it way back in 2000).

I am still ?dragging my feet? in making the final decision mainly because I don?t have clear symptoms.

Well actually "Symptoms" is another subject open for interpretation and discussion but let's leave that for another thread and try to keep the discussion focused on this thread subject.

My question to you all is:

- What was the reasoning for your cardiolog or surgeon for recommending the Ross procedure versus the straight aortic tissue valve replacement?
- What readings or statistics did you find to help you finalize the decision in favour of RP?

There are obvious additional risks and complications related to the change from a single valve patient to a two valve patient.
So what are the benefits of RP relativ to the the single tissue valve aortic replacement?

In my discussion with Dr Tirone David at Toronto General Hospital I selected RP as my choice but now I am starting to have second thoughts about my decision, so any feedback would be welcome.


Thank you all, good luck and good health to everyone

Ion Manea

 

[Marguerite53]

Hello, Ion. Welcome to our wonderful community. I am a 52 year old woman.

I just had a .4cm squared, crticially stenotic bicuspid aortic valve replaced with a bovine tissue valve (I'm pretty sure it was the Carpentier Edwards perimount magna, but they don't seem to have it easily listed on my chart so I'll wait for post-op visit in 10 days to be sure)

Obviously not a Ross. I did ask my surgeon about the possibility of getting a Ross and here in our town, the only surgeon doing them (whom he had any confidence in) was a pediatric surgeon, so he told me to pass. In my case, the ONLY thing wrong was the stenotic valve. I did not have much calcification. Surgery didn't even last 4 hours. I have a neat little 5 inch scar (full sternotomy, though....how he did this.....??) and am mending nicely. Surgery, was on 4.18.

There are several, if not many, successful Ross Procedure people here. Please use our search button to see what you can come up with. Hopefully, those with the actual experience will be along to advise you some.

Good luck. And, hey....get it done whatever you choose!!!

Marguerite

 

[Tom F.]

You need to pick what seems the best option for you. If Dr. David is performing your surgery you have one of the very best in the business, and so I would guess that your chances of a succesful Ross would be very good.

The advantages of a Ross are that in most cases its a one time fix that does not require coumadin and does not present a certainty of a second surgery if you out live your tissue valve. But, the Ross is a tricky surgery, and there is always the chance that something may go wrong. But that is a risk in any heart valve surgery, even sometimes mechanical valves need replacement.

For me I have an aortic valve repair, via a technique developed by Dr. David. My second choice if the repair failed was the Ross, and I was very comfortable with that decision.

 

[Kristy]

Hi Ion,
I got my arotice valve replaced on 4/13 and had considered getting a Ross. I consulted with a surgeon that does them and he said I was a good candidate for the procedure. My cardiologist was not supportive of it and told me he didn't think the Ross was all that others say it is. He asked me to talk to a surgeon at either the Cleveland Clinic or Mayo, which I did. I called Mayo in MN in Feb. and spoke with Dr. Orzulak (?sp) and he would not say whether he thought I should get the Ross or not but if it was his heart, he would get a bovine valve, just his personal opinion. His personal concern is that you go from being a patient with one compromised valve to a patient with two compromised valves; however if you get the intended results, it could 'fix' your heart for life. I went into surgery feeling 80% right about my decision of a bovine and now that the surgery is done and over, I am not second guessing myself (not much good in doing that now!).

You can find posts from people who have had the Ross and done very well and I think it is helpful to know that there are lots of people out there who got a Ross and are doing well with it. The most important thing is that determine what is right (or right enough) for you. Keep reading and asking questions.

Take care,
Kristy

 

[Sir Reel]

If you go with the Ross, make sure you get a doctor who excells at it. You don't want someone learning on you. It is complex and you can find stories of problems with inexperienced Ross surgeons on this board if I recall correctly.

A month ago I saw a new cardiologist due to a job relocation. I mentioned that my surgeon wanted to do a Ross but decided during the surgery not to go forward with the Ross and used a porcine instead, so oh well I guess I get to have another surgery in the future. The cardiologist said they were seeing the valve put in the pulmonary position requiring replacement so that you ended up with a perfect Ross but a second operation 10 years later. As I didn't have the Ross, I didn't press further for information so I can't offer any other help.

However, if you are considering the Ross, you might want to explore explore whether your surgeons and cardiologists feel this is a developing risk with the Ross.

 

[dcpickle]

Ion,
I had a Ross in October 2004 at the age of 42. When I found out I'd eventually be needing surgery (back in 1998) I found the Ross Procedure right away. No cardiologist ever specifically recommeded it for me. I chose it (and the surgeon) ( and the timing for surgery) completely on my own. I've had a good experience so far, so naturally I'm quite an advocate for the RP. Just make sure your surgeon is well experienced. There was one aspect of my surgery which might have gone badly if I had gone to the local RP surgeon (even though he had done over 90) but Dr. Stelzer was able to handle it. I say this based on actual remarks from the local surgeon about how he would handle this particular situation ("true" bicuspid valve) If I had gone to him, he would have not done a RP but I would have a tissue valve today. (I know, it's not a bad choice, but it's not what I wanted!)

All this to say that the surgeon does matter. Take whatever steps are necessary to get the best surgeon, including going out of town. Going out of town worried me a bit before my surgery, but it turned out to be no problem at all.

As for whether to have an RP, it's your heart, and you must make the decision you feel best about. Mechanical, tissue and RP are all perfecly valid choices, and there are many people with each type represented here. Each option has both it's strengths and weaknesses. It just depends on what is important to you. The RP just looked like the best option all along to me, so that's the way I went.

Ask lots of questions and you'll get lots of answers. Hopefully you will eventually get a good feeling about one option or another.

Good Luck
David

 

[Bryan B]

Ion,

As you can tell by my signature I had a Ross Procedure a little over two years ago. Like DC, I have also had a good experience so far so I'm an advocate for the RP as well (for the right candidate). I did not have a bicuspid valve however. "BV'rs" can sometimes have connective tissue disorders which would preclude them from getting a RP, and the surgeon may not be able to determine this until he opens you up. My valve needed replacing due to years of aortic prolapse and insufficiency (caused by an unclosed VSD), and the scales tipped towards surgery after a bout of endocarditis. Finding a good Ross surgeon seems to be an essential key to having a successful procedure...including a surgeon who is not afraid to abort the Ross if he is not comfortable with what he sees once he opens you up.

Another thing I'd like to bring up is the pulmonary valve that people worry about. I've seen more than one poster mention that surgeons that don't recommend the Ross talk about the pulmonary valve failing in a short peroid of time. There is a phenomena where the body seems to create scar tissue (similar to rejection but not technically) in a very small percentage of patients. This is a real issue and one of the risks involved (albeit a small risk). People whose scars tend to keloid may have a higher risk of this happening. Other than that, I believe most surgeons that bring this issue up are speaking about old statistics. Up until about the mid 90's they used to implant a homograph aortic valve in the pulmonary position. They were finding that for some reason an aortic homograph did not fare well as a replacement in the pulmonary position. They have since changed the procedure and use a homograph pulmonary valve in the pulmonary position with much better results. I have also read on this forum recently that a surgeon told a member here that replacing the pulmonary valve (if needed) is a more risky procedure than having another AVR. Actually it is just the opposite. Since the pulmonary valve is on the outside of the heart, the surgeon has easier access to it than to the aortic valve. It also looks like catheter replacement of the pulmonary valve (i.e. no OHS) may become routine in the not so distant future due to it being more accesible than the other heart valves. Another change they have made to the procedure is to replace your aortic valve and root with your pulmonary valve and root (autograph). I believe there were tendencies for aortic root dilation in patients prior to this change. I honestly think that many surgeons that don't perform the RP may not know as much about the procedure as they may think they know.

Anyway...do your research before discussing the Ross again with Dr. David. He really is one of the best in the world at performing the RP. I suggest you use the search feature at the top of the page...there have been several great threads in the past in this forum (valve selection) on the RP (as well as mechanical and tissue valves). You may find some of this information in the reference forum as well. Good luck with your decision!

 

[gijanet]

For a Ross gone awry.........

For a Ross gone awry.........

not to scare you, but just so you are fully informed. I still think the Ross is a great choice for many, but yes, do your homework. Hugs. J.

http://www.valvereplacement.com/forums/showthread.php?t=15757

 

[Bryan B]

not to scare you, but just so you are fully informed. I still think the Ross is a great choice for many, but yes, do your homework. Hugs. J.

http://www.valvereplacement.com/forums/showthread.php?t=15757

I just wanted to address a couple of things from Bradley's post (see link in janet's post).

I decided to be proactive and go to the Mayo Clinic last week. It was very hard choice to make. The cardios at Mayo told me that my autograft had moderate to severe leakage and that my aortic root was very big -- 52 mm. Furthermore, the homograft in my pulmonary position had moderate leakage. I had never heard a thing about my aortic root or my pulmonary valve before this. The doctors and surgeon at Mayo told me that 52 was very big but that my previos cardiologists hadn't been measuring the size of my aortic root until they did that cath in December and they measured in at 52 then too. So it is 52, but a "stable" 52 -- in that it hasn't gotten any bigger in he last 3.5 months. My Mayo docs seemed very frustrated that my previous cardios hadn't tracked the progression of the aortic root enlargement. At any rate, they said I could shcedule surgery or come back in August and see if the aortic root had enlarged anymore.

I also am having a lot of resentment towards my first surgeon and cardios for selling the Ross as a god-send. It wasn't a god-send for me. It has turned me into a two valve patient. The cardios at Mayo told me the Ross has fallen out of favor and that they have seen "hundreds of failed Rosses over the last few years." This makes me almost sick to my stomach. But I am trying to not have any regrets about my first surgery and my choice. I did the best I could with the info I had.

[soapbox]

Since I haven't spoken with Bradley personally I am making an assumption based on his post. It sounds like the surgeon that did his Ross Procedure may not have replaced his aortic valve AND ROOT with his pulmonary valve AND ROOT. I'm not sure exactly when they changed the procedure to routinely replace the aortic root when performing the RP, so I do not know if the change in procedure happened before or after Bradley's RP was performed. I addressed this issue in my prior post. Bradley also mentioned that he thinks he had a BAV. I also addressed that added scrutiny is advised for BAV patients before deciding on the Ross Procedure. This is where having a highly skilled RP surgeon who has considerable experience dealing with BAV patients is important.

The 2nd thing I wanted to address was the statement about the Mayo clinic saying that the Ross Procedure has fallen out of favor and seeing hundreds of failed Ross Procedures over the last few years. I am not doubting that someone may have said this to him, but I can't find any information to back up this claim. I understand how frustrated and concerned Bradley must feel having to go through so much at such a young age. At the same time, I don't want potentially good Ross Procedure candidates to become scared away from considering the RP after reading claims that may not be accurate. One thing everyone must remember...there are good surgeons and bad surgeons...and there will be some who experience complications and bad outcomes no matter what valve they decide on...otherwise there would be a 0% chance of mortality/morbidity for valve replacement surgery.

I think when we discuss something as important as valve selection and OHS, it is paramount that we leave emotion and bias out of the equation when discussing these matters with members that are trying to make these difficult decisions.

[/soapbox]

 

[MrP]

As a bicuspid patient, I was told by my surgeon that the Ross procedure is no longer recommended given the underlying connective tissue problem. In other words, the same problem is inherent in all of your valves and aorta. My surgeon told me he no longer will perform the Ross procedure for bicuspid patients. You can also do a google search and find this same recommendation in research articles.

 

[Bradley White]

some info...

some info...

I said in my first post that I thought that I was born with a BAV...after re-examining my records and talking to my surgeon, he told me that my valve was in fact tricuspid. After performing the surgery he told my parents that two of the cusps were very badly deteriorated and calcified, thus why I had very severe regurgitation and stenosis. So I did not have a BAV. This, however, does not rule out the possibility that I have some underlying connective tissue disorder, which is usually associated with BAV. In fact, it seems likely that I do have a connective tissue disorder and this is why my aortic root and ascending aorta have been enlarging. My point is that it is not always so easy to distinguish who has an underlying connective tissue disorder and who doesn't. It's not as simple as -- you have a BAV so you have a connective tissue disorder. More research needs to be done in this area. Cardiologists are still somewhat in the dark.

Some of the numbers I reported in my first post may have been slightly off -- my aortic root was 28mm at the time of my first surgery and they "wrapped" something around it to shrink it to 22 mm. Now it stands at 52 mm. Quite a large increase. Based on this information I would assume that I didn't have my aortic root replaced -- just reduced in size. However, I will have to talk to my surgeon to make sure of this.

Dr. Naser Ammash told me that they do maybe 1 or 2 Rosses per year at the Mayo Clinic. And he also told me that "they have seen hundreds of failed Rosses." This is a direct quote. And for this reason the Mayo Clinic is very very conservative when it comes to the Ross Procedure. Of course, it must be acknowledged that they are very biased. People who had good Rosses don't go to the mayo clinic, it's only those who had failed Rosses. I will however, note that three independent cardiologists told me that the Ross is falling out of favor. I have no reason to make this up.

This whole "quality of a surgeon" thing is a complex issue. Of course one would rather have a surgeon who has done some rosses before, but I definitely know patients who have had their ross's done by one of the "big" Ross surgeons (elkins, stelzer (sp?)) and have had miserable results.

I can't say whether or not anyone else should get a Ross. All I can do is tell people my story and relay messages or information that I have heard. Valve replacement is a very personal choice and the benefits and risks of all types of valve procedure must be weighed on a personal basis.

Brad

 

[Bradley White]

Bryan -- you wrote

"I think when we discuss something as important as valve selection and OHS, it is paramount that we leave emotion and bias out of the equation when discussing these matters with members that are trying to make these difficult decisions."

1. My intention in posting my story was not to influence anyone else. I did it to help myself while also introducing others in the forum to my cardiac history.

2. I think it is absolutely impossible to leave "emotion or bias" out when discussing the idea of the Ross with a potential candidate. Everyone's views and beliefs are shaped by his/her own life experiences. It is human nature -- completely inevitable. I also find it unlikely that your own advice is in no way influenced or "biased" by your success with the Ross procedure. There is no way you would have taken time to address points in "My Story" if you hadn't undergone a successful RP.

you also wrote --

"At the same time, I don't want potentially good Ross Procedure candidates to become scared away from considering the RP after reading claims that may not be accurate. One thing everyone must remember...there are good surgeons and bad surgeons...and there will be some who experience complications and bad outcomes no matter what valve they decide on...otherwise there would be a 0% chance of mortality/morbidity for valve replacement surgery."

At the same time that you don't want to see good candidate get discouraged from getting a Ross, I don't want to see imperfect candidates become encouraged by stories of how great the Ross is.
[/COLOR] By reading about both the positive and negative outcomes one can becomes more aware of the risks and the complications.

Also, it seems like you are implying that most people who had bad outcomes with Rosses would have had bad outcomes with a lot of other valve replacement options. I think that this is, at best, supposition.

Brad

 

[Bradley White]

last reply, i promise

last reply, i promise

As for the Ross falling out of favor... I want to carify what I, and the cardios that told me this, mean. In the late 90s everyone seemed to be a good candidate for the Ross. Now surgeons have become much more conservative when determining candidacy for the procedure...

If you go to
http://www.rossregistry.com/fcMain.asp

It is quite evident that there is a significant downard trend in the amount of Rosses being registered. This likely reflects a decrease in the number being performed. This supports the claim that the Ross is falling out favor, except for ideal candidates. However, if you are an ideal candidate, then the Ross may truly be a god-send.

Brad

 

[ibasar]

More Ross questions

More Ross questions

Hello everyone,

My 13 years old son would need aortic valve replacement probably in a couple of months. Our cardiologist also recommended Ross. I read your answers to Ion carefully. Could you please tell me who is the ideal candidate for Ross procedure? And could anyone also write the names of most experienced CT surgeons about Ross procedure in the States?

Sorry Ion, I am only a beginner and have not much to tell you at the moment

Best of luck

ibasar

 

[Bradley White]

Hi Ibasar,

I don't feel qualified to say who is an "ideal candidate," although I heard that people with aortic stenosis, as opposed to insufficiency, tend to be better candidates. I believe the underlying "cause" of the aortic stenosis is also important. So your son may very well be a good candidate. I have heard from many people on this board and others that Paul Stelzer is a great surgeon and he would likely be able to determine your son's candidacy for the Ross: his website has contact information:

http://www.ps4ross.com/index.shtml


I also have heard great things about many of the surgeons and cardios at the Cleveland Clinic: http://www.clevelandclinic.org/quality/guides/heartDisease.htm

Navigation of the website will give you contact information for all of the cardios and surgeons at the Cleveland Clinic.

I am sure that others will be along with more suggestions: these are just surgeons/institutions that I have heard very good things about second hand. I also know that there are many experienced Ross surgeons in Europe. Others will likely be able to give you better recommendations concerning specific surgeons both in states and europe.

Brad

 

[Lutesj]

Ross Additional Thoughts

Ross Additional Thoughts

Reading through this thread, I see successful RP's (such as my own), a failed RP, and someone looking for a solution for a young teen. I have to admit that my Cardio recommended the Ross right away in December of 1998, didn't even explore other options as I placed my "faith" in him.

Now, at my annual check-ups, he tells me he no longer recommends for his patiemts. due to complexity (perhaps due to declining use of this procedure and a surgeon's willingness to invest the time and effort to perfect it).

I did look at Ross Registery, I certainly had mine done at the supposed height of the RP movement, but I'm not convinced the reported numbers are not partially caused by Surgeons failing to report procedures done (I sent an e-mail to Registery, let's see if I hear back).

Soo, I recommend every one seeking out a solution get ALL the details from your Cardio, identify what makes an "ideal" Ross candidate, and do a match against that. Then, if you pursue, if your sugeon of choice is not passionate about the RP and the outcome, find another surgeron OR walk away from the Ross.

These threads bring back many emotions for me, and thoughts of my wife who lived on the internet for months before we found the right surgeon.

When you do make your decision, accept it and the all the positive or negative outcomes that could occur. Follow your heart, but lead with your mind...

John Lutes
RP Alumni
1999

 

[ibasar]

Ross practice in Europe - graft availability - cost

Ross practice in Europe - graft availability - cost

Hello everyone:

During my search in the net I noticed that Ross series performed by European Surgeons in Europe are smaller compared to the States, so that makes me think American Cardiothoracic centers perhaps are more experienced about Ross procedure, am I wrong? I need more information about Europe' practice because geographically we are in Europe.

Another issue is the homograft preservation and availability. The success of Ross operation ( or any homograft operation) seems to be dependent on the homograft available. How can we make sure that a good size, well preserved graft is available at the CTS center? Is it possible to determine the homograft size pre-operatively by echoe findings alone? Should we expect a surprise like 'no homograft was available so we had to replace the pulmonary with a xenograft! or with a mechanical valve!!!

My questions are perhaps more technical but the cardiologist's answers did not satisfy me and I wish to know yours. I also wonder the approximate overall cost of Ross procedure in the States.

Brad and John.... thanks.. your messages helped me a lot during my search.

ibasar

 

[Bradley White]

Hi,

I honestly don't know if the Ross is more popular in the US than in Europe. Even if it is more popular in the States, I still am certain there are great valve replacement surgeons with Ross experience in Europe (especially England and Italy).

I believe that they can perform a catherization prior to surgery to determine the exact size of the homograft needed for the pulmonary position. Then they obtain it from a company which has A LOT of these valves such that they do not "run out" of any "size". So there shouldn't be any surprises with this. I have never heard of anyone getting a xenograft or a mech valve in pulmonary after they had selected the Ross.


The approximate cost is very difficult to estimate. It varies by surgeon, hospital, hospital stay time, and possible complications. I was in the hospital for a week and my total bill was something like $100,000 -- with the surgeons fee at about $15,000. You can get an idea of how much others' surgeries cost by looking at the recent heart talk forum thread. No matter where you go you can expect the total bill to be at least $50,000 with the possibility of it being significantly more.

Brad

 

[Perry]

Just for the record...I had chosen a xenograft valve for my pulmonary position when expecting to receive the Ross Procedure. But Pre-op tests concluded that I was not a good candidate for the Ross. I now have an ON-X mechanical aortic valve.

I do not know how cost compared (xenograft vs homograft) but with all of the tissue valve progress and claims of durability I felt such a valve was the right choice. My surgeon has done about 100 Ross Procedures and liked my choice.

I do not know of anyone who has received the Ross and chosen this option for the pulmonaary side.

Perry

 

[PapaHappyStar]

Hello everyone:

During my search in the net I noticed that Ross series performed by European Surgeons in Europe are smaller compared to the States, so that makes me think American Cardiothoracic centers perhaps are more experienced about Ross procedure, am I wrong? I need more information about Europe' practice because geographically we are in Europe.

Another issue is the homograft preservation and availability. The success of Ross operation ( or any homograft operation) seems to be dependent on the homograft available. How can we make sure that a good size, well preserved graft is available at the CTS center? Is it possible to determine the homograft size pre-operatively by echoe findings alone? Should we expect a surprise like 'no homograft was available so we had to replace the pulmonary with a xenograft! or with a mechanical valve!!!

My questions are perhaps more technical but the cardiologist's answers did not satisfy me and I wish to know yours. I also wonder the approximate overall cost of Ross procedure in the States.

Brad and John.... thanks.. your messages helped me a lot during my search.

ibasar

Hi Ibasar ( and Ion, sorry for not being more directly relevant to your original question ),

I had an RP done in NYC by Jan Quaegebeur -- he trained in Europe and learned the RP there, at this point he is one of the leading practitioners of the Ross in the world especially for pediatric patients, he is also an expert in a related procedure -- a swap of the great arteries to repair the "transposition of the great arteries" (TGA). This might be particularly interesting for you since he does surgeries in Europe sometimes as well -- you wont be far off the very top of the line with him.

The RP, as you probably already know is a good idea for young kids -- the autograft is the only tried and tested way of allowing the possibility of growth on the aortic side, provides excellent blood flow which can be vital in the young and does not need anti-coagulation medication. The main issues: a) The autograft sometimes dilates post-operatively -- the risk of this is greater if there is pre-operative root dilation ( ideally an RP is performed on patients with primary aortic stenosis ); b) The pulmonary homograft will need replacement as it gradually calcifies, the homograft is often oversized in the young to compensate for growth and size mismatch is better tolerated on the pulmonary side because of the lower pressures there -- i doubt if there are many problems with homograft availability since it is possibly to cryo-preserve these valves and they dont need to be viable on implant ( i.e. living tissue ).

Let me know if you need any further info from me -- all the best to you and your son.

Regards,
Burair