Ross vs. AVR

[Destinova]

Hi everyone. First let me start by saying I have read through a number of the threads on this topic already but of course my situation is unique, as is everyone elses, so I just wanted to throw down some background info and gather some opinions.

I'm was born with a bicuspid aortic valve and had a surgical valvulotomy at age 3, which resulted in moderate aortic regurgitation. It was only a matter of time before I would have to have the AV replaced, but the later the better, right?

Well I'm now 30 and it's time. I've been through 3 rounds of Endocarditis, all of which were detected very early so no major damage has been done to any of the other valves.

I've been experiencing angina and shortness of breath during exercise, and overall my activity level has dropped. My cardio referred me to a surgeon and voila, it's time to yank the bum valve.

The angiogram and MRI showed some very minor stenosis of the aorta itself, but my surgeon does not think it is a big deal. My cardio also believes there may be a small perforation of the Mitral valve from my most recent bout of Endocarditis, but it would be easily repairable once they were in there.

Being the technophile I am, I did a lot of research before meeting with my surgeon (Dr. MAcArthur), and I asked him about the Ross Procedure. He referred me to a colleague (Dr. Ross) who is a congenital specialist and the guy around here who does the Ross. He called today to tell me that I am in fact a candidate for the Ross, and both surgeons and my cardio have left the choice to me on what to do next. Ugh. I am meeting with Dr. Ross (not THE Ross, just happens to have the same name lol) sometime soon to discuss that option with him. It appears either way that both surgeons would be attending my surgery regardless.

So here are my choices as they have presented them to me:

1) AV replacement with possible MV repair
2) AV and AR replacement with possible MV repair
3) Ross Procedure with possible MV repair

Now about me a little more...I'm only 30, I'm not a marathon runner by any stretch of the imagination, but I would like to be active. I'm moderately overweight (5'10", 245 lbs.) although I am trying to change that to make this as easy as possible for my heart. I've found that diet alone does help me but adding some cardiovascular exercise would simplify things. I have no major fear of Coumadin (this site has been very helpful in that regard) but would also like to limit my chances of reoperation down the road.

My biggest concern is my girlfriend and my family. I want to do whatever is going to keep me around the longest. I want to get married and have kids, and I want to be around for them too. Longevity is the key for me, as I am sure it is with 100% of the rest of you.

It's my understanding that a mechanical AV/AR replacement would last me the rest of my life, but the data is still "out" on the Ross procedure and how long the replacement PV lasts. Does anyone have any stats?

So...there it is in a nutshell...a rather large one.

But, what are your thoughts?

 

[OldManEmu]

Some Ross stats

Some Ross stats

I was to have a Ross until my heart function collapsed in the 2 weeks before scheduled surgery so got a normal AVR. I did a significant a mount of research on the Ross and the likelihood of a Redo being required. Here are some long term stats. http://www.ctsnet.org/doc/2381 Here are some more http://www.hsforum.com/stories/storyReader$1475 You should be properly evaluated for a Ross and the surgeon should have done more than 25 of them. This appears to be the number required before the mortality rate stabilises. About 1% of people with a BAV also have a bicuspid pulmonary valve this precludes it from being used in a Ross. Unfortunately we have a member here who had a surgeon use their bicuspid pulmonary valve and the Ross failed in 8 years. This is a difficult decision.

 

[Turkey Hunter]

It is a tough choice to make. But it is also very personal. Getting input and oppinions is a great thing to do, but no one can make this decision for you. You have come to a great place to get views from all sides of the AVR coin. We have folks here who have been through it all to parents who had to get their youngun's AVR at 4 months old.

As you can see below, I had the RP. And would make the same choice again. Other than being slightly overweight (working on it too, as you said) my health is great. I am actually going to be wrestling in an open tournament in the upcommoing weeks. I am 33 and am not a bit worried about how my heart will handle the stress of a full go wrestling tournament.

The best advice I can give you is to be sure you are choosing a very qualified surgeon for the RP, if that is how you decide. I am of the oppinion that 25 is not enough. 100+ is a better figure.

Hope this helps.

Ben

 

[Destinova]

Thanks for the replies thusfar. I am definitely just taking on some opinions here, not expecting anyone to make the choice for me of course.

I've definitely looked at the data you posted Emu, but my concern is that those statistics come from research done in 1991 and 1996. There has to be data more current than that, but I can't seem to find it.

With the original Dr. Ross performing this procedure beginning in the late 60's I would expect a whole lot more data. Primarily the reoperative statistics for both valves.

 

[tobagotwo]

I am somewhat surprised that your doctors are thsi positive on the Ross Procedure, as some aspects of your description appear to suggest possible connective tissue concerns down the road, which can be problematic for long-term Ross success.

Aortic root replacement was mentioned as a possibility. An expanding aortic root will spoil a good valve. Generally, they don't replace a root unless they are concerned it is expanding. While not always a sign of connective tissue problems, it can be one, in association with other things.

As well, you have a history of endocarditis, which may have affected the pulmonary valve to some extent not visible in the echo.

The Ross Procedure is probably the best of possible worlds in the current technology, but it requires everything used to be in top shape.

Of course, I couldn't know what your heart tissue is like from internet posts, but I would recheck their opinions on your tissue's future condition before opting for the Ross.

Best wishes,

 

[Mary]

Check Dr. Paul Stelzer in the Search feature. He has his statistics posted on his site.

Thanks for the replies thusfar. I am definitely just taking on some opinions here, not expecting anyone to make the choice for me of course.

I've definitely looked at the data you posted Emu, but my concern is that those statistics come from research done in 1991 and 1996. There has to be data more current than that, but I can't seem to find it.

With the original Dr. Ross performing this procedure beginning in the late 60's I would expect a whole lot more data. Primarily the reoperative statistics for both valves.

 

[Bryan B]

Destinova,

As you can see by my signature I've had a Ross Procedure as well, and I also had a bout of endocarditis. However I did not have a bicuspid valve. As Bob mentioned, connective tissue disorders should be ruled out before undergoing a Ross (which isn't that uncommon with BAV disease). They may have to wait until they open you up before they can make this determination. I would also agree with Ben in recommending that you look for a surgeon that has performed closer to 100 RP's. One positive about the RP is that they can replace your aortic valve AND root with your pulmonary valve AND root. Don't quote me on this, but I believe it is now standard for them to replace the root with the valve. I might be wrong about this, but I know my surgeon replaced my valve and root even though I had no problems with my native root.

When I was researching the RP I got the impression that as long as the autograft held up that getting the RP was the best option for me. It seems from everything I've learned that once you reach ~5 years with no problems it is likely that the autograft is "good to go" indefinitely. It also appeared from the data I read that the homograft pulmonary valve would last upwards of 25 years in an optimal situation, and if and when it needed replacing would be less risky than having another AVR. I've also got my fingers crossed that they will be routinely replacing pulmonary valves using a transcatheter procedure by the time I need mine replaced.

I think the most important thing when considering a RP is to get the best surgeon availabe, and one who isn't willing to go through with the procedure unless you are a perfect candidate for it.

Good luck with your decision!

 

[OldManEmu]

Bryan is correct the Aortic root is also replaced as part of the Ross. Stats on the Ross can basically divide into 2 series. Mr Ross's original procedure first done in 1967 was the valve only. In the late 1970's he modified the procedure to include the root so as to reduce what was proving to be a significant area of failure. This later Ross technique including the root spread to the US in the 1980's. These later Ross procedures including the root have proved more durable as Mr Ross expected. As Bryan said most of the problems usually begin in the first 5 years.

 

[Destinova]

Here's an interesting question...

Does anyone know of anyone who has ever refused the Ross procedure in favor of standard AVR? Even if they had been told they were a good candidate?

 

[Randy & Robyn]

Here's an interesting question...

Does anyone know of anyone who has ever refused the Ross procedure in favor of standard AVR? Even if they had been told they were a good candidate?

I was told I would be a candidate for the Ross before my last surgery. That was by a surgeon who has excelled at performing the Ross as well. I declined specifically because this was already my second surgery in four months and I was worried about an early failure. I guess I would have to chalk it up to intuition more than anything else. I didn't have a good feeling about it. It's a very personal decision and I did what I thought was best for myself.

Randy

 

[Destinova]

Thanks Randy, and I hope all is going well this time around!

I almost wish I didn't have a choice...

 

[Bryan B]

Here's an interesting question...

Does anyone know of anyone who has ever refused the Ross procedure in favor of standard AVR? Even if they had been told they were a good candidate?

Assuming that the patient is a viable candidate for the RP I would think they would then go through the same process as someone deciding whether to choose a mechanical or tissue valve. The patient needs to look at all of the possible advantages and disadvantages and decide what's best for them. A couple of considerations that may steer some patients away from the Ross is that a) it's a complicated procedure and comes with a slightly higher risk of mortality (IIRC an additional 0.5% above traditional AVR), and b) some patients don't like the idea of becoming a double valve patient. As Randy pointed out, he didn't feel the risk was worth it since he was undergoing his 2nd surgery in 4 months. I think that if I were in his position I would make a similar decision. OHS is no walk in the park. My backup choice if my surgeon couldn't do the Ross was going to be a tissue valve. Now that I've experienced OHS I honestly don't know if I would choose the same backup plan (although I am happy I chose the RP).

 

[Turkey Hunter]

Man, do I remember that feeling.
I do understand where that thought comes from, I just want to encourage you to understand how luckey you are to have one. It seems like the easy way to let someone else make this choice, but how compfortable would you be with post AVR knowing you could have decided what seemed to be the best choice and you ended up with what your gut told you was the last choice on the list ??

Having the time to research the options and make an "educated" decision, is a gift. There are many folks here that did not get that choice and would love to have had the choice, much less the warning of the procedure.

Ask alot of questions and learn all you can about every option, you will make the right choice for you.

Take care,

ben

I almost wish I didn't have a choice...

 

[xbxb]

Decision

Decision

I had a a bicuspid valve repair on 8/2/05 (still have my own valve) and root replacement.
I learned from my Aorta specialist that all the data shows that 50% of the people who have bi-cuspid valves will also have a dilated Aorta - and require replacement.
Not choosing the Ross for me was a somewhat easier choice. The surgeons I spoke with did not feel it offered me a much greater benefit - especially when I spoke with Dr's that had done bi-cuspid repairs. I think if I personally had thought that the Ross offered me greater benefits I would have looked for surgeons who had done at least 100 Ross procedures. The Ross is more complicated and a little more difficult to understand so I think that made me less comfortable with it - especially since none of my surgeons were promoting it for me.
Before surgery I had chosen a tissue replacement if a repair was not possible. These type of decisions are yours to make. Educate youself, find the pros and cons - writing them down can help simplify the decision making process- and then go with your gut and don't look back.
I know it is difficult - but really work hard to lose that weight - go see a nutrionist. It is so much easier when you are not hauling around that extra weight. Especially after surgey when you will be walking.

I know this is a tough decision. Keep asking questions and go with what you feel most comfortable. Good luck.

 

[tobagotwo]

From an earlier post I had researched:

"It should be noted that not all bicuspid valve owners have one of the associated tissue syndromes. Bicuspid valve owners make up about 2% of the population, but most bicuspid valve owners live their entire lives without ever having to do anything about it.

"It has been estimated that about 1/3 of bicuspid valve owners wind up with serious complications, such as aortic valve disease, requiring AVR. Perhaps 40% of those that do require AVR also end up displaying some form of problematic connective tissue symptoms to some degree, notably including aortic aneurisms or myxomatous (weakened) tissue."

This would mean that about 14% of all people who have bicuspid aortic valves have aneurisms or myxomatous tissue syndromes. All people includes those who never have to have them repaired or replaced, so it's a much larger pool than just those on this site because of AVR surgery.

Of those who do have the surgery, about 40% also show syndromes. That doesn't imply that all of those require further action, either: it just indicates that a syndrome is recognized.

http://circ.ahajournals.org/cgi/content/full/104/suppl_1/I-21 (regards Ross Procedure and bicuspid valves)
http://atvb.ahajournals.org/cgi/content/full/23/2/351
http://circ.ahajournals.org/cgi/content/full/106/8/900
http://www.csmc.edu/pf_5594.html
http://www.csmc.edu/3866.html
http://www.bicuspidfoundation.com/
http://www.medhelp.org/HealthTopics/Congenital_Heart.html (look alphabetically under "B")

Best wishes,