Ross procedure contraindications - Help!

[sarahsunshine]

Hi All,

I am a little last minute and don’t have time to do a TON of research (I’ve done a bunch but not specific to the Ross procedure). This is in relation to my step-son who will be having OHS next week replacing his mitral valve (likely with On-X), and possibly a Ross procedure. I did have a couple comments earlier and was hoping that someone could expand on them (tobagotwo), and/or send me in the direction of some good literature!

Here’s what I understand: (i.e. What’s the scoop on the Ross procedure and Bicuspid aortic valves?) It seems that there’s a connection between bicuspid aortic valves and “connective tissue disorder”, but I don’t know exactly what defines a “connective tissue disorder”. I think (but I may have it backwards) that the upshot is that if you have a bicuspid aortic valve that is bad enough to require surgery early in life, AND you have coarctation of the aorta, that the chances of the autograft last a “lifetime” is smaller than for those without the other issues. I think the reason is that Coarctation of the aorta AND aortic stenosis suggests a more “diseased” heart (which I think is what is meant by “connective tissue disorder”).

Now if anyone could explain this to me in more detail and more explicitly, and/or send me to some recent literature (last 5 years), or summary papers, I would be ecstatic. I need to educate Dad before Pre-surgery on Friday when he meets the surgeon (well they met when step son was 4mo old but that was a while ago and not related to this surgery!). I can’t go to the pre-surgery myself, unfortunately.

Personally, I think that in my step-son’s situation the Ross procedure should NOT be an option (coarctation of the aorta indicated, Aortic stenosis requiring balloon valvuoplasty at 9 days). Unfortunately, Biomom is so enamoured with the notoriety of the surgeon that she thinks we should follow like sheep. I do understand that there is actually very little control that we have of the situation and what actually happens in the surgery, on the other hand, I think it is very important to know what the options are, and that the surgeon understand our concerns to help make the best decision for this 12-year-old’s future.

Sorry for the novel, I hope someone can help.

 

[Lynlw]

Just so you know, one of the main groups that the Ross is usually recomended for is pediatrics/young adults, so many of the things told to adults here might not be as important to children which they usually take other things into consideration or is more important like growing that doesn't concern adults.. so if it were me, i would focus on the Ross procedure in children studies and articles. I know Justin's surgeon, Thomas Spray at CHOP has done alot of the articlees, studies on the Ross in children if it helps to search using a name


IF you haven't cheecked them out, I find the BAV Org has the best, info explaining bicuspid valve disease and the connective tissue link http://bicuspidfoundation.com/ nd place to find alot of info, research etc

 

[sarahsunshine]

Thanks!

I've been finding that site very difficult to navigate.

 

[scott.eitman]

As for the Ross, I will never understand compromising two valve for the sake of one.

 

[sarahsunshine]

As for the Ross, I will never understand compromising two valve for the sake of one.

You know, I'm with you completely. I don't get it. I really don't get it. It's like taking your good glove off your left hand to put on your already terribly frostbitten right hand in -40 weather. It could recover, but you could just lose fingers on both frostbitten hands!

But then, I can't make the decision.. I can only do my best to inform the bio-parents. It's really tough for me to sit by and watch people actively decide not to educate themselves on something this important. Harder that if I say something to the Biomom, that she will actively do the opposite and say it's none of my business, and the doctors know best. Hard knowing that Dad (my husband) is stuck between knowing the information (from me) and that Biomom is a sheep and will blame him for anything if he speaks up (and for anything if he doesn't speak up). And it will be hardest not to say "I told you so" if and when the time comes.

I can just pray that:
1) The surgeon decides on his own not to do a Ross procedure.
2) That the surgery (if he does a Ross), is in the percentage that is a flying success (which currently the percentages are too small for my liking).

Then we get to listen to Biomom say that she was right all along and that it wasn't necessary to research (or that it was her homeopathics and supplements that made the surgery a success)... but at least Step-son will be healthy.

 

[kfay]

Sarah, I really have feel for you and the situation you are in. That has to be incredibly tough. It's too bad that relationships with "steps" have to be so strained, especially when it is so obvious you love the child so much.

I'm sorry, I can't really add to your question about research. I would just have to wonder why in the world they are concerned about putting in another mechanical in the aortic position when they are already going to be putting one in. I get the thought that if they do the Ross, the hope is that the pulmonary valve in the aortic position will grow with him, however, if he outgrows the mechanical mitral valve, it will have to be replaced anyway, so if they had a mechanical aortic, they could replace it at the same time.

I'm sure you've come across the papers that show that the Ross procedure has fallen out of favor in the recent past. Less and less surgeons are willing to do it, and if I were considering it for my shoes, there probably on a very small number of surgeons I'd let do it.

I have a feeling I'm preaching to the choir here in that you probably feel the same. I hope for everyone's sake that that little boy comes out on the other side and lives a long and healthy life. He is lucky to have you in his life.


Kim

 

[Adrienne]

Maybe I read the post too fast and missed something, but if your step-son is going to have an On-X (mechanical) valve for his mitral valve, and will therefore be on anticoagulants in any case, wouldn't it make more sense for him to get a mechanical valve for the aortic valve?

 

[Lynlw]

Thanks!

I've been finding that site very difficult to navigate.

This page has alot of the basic info http://bicuspidfoundation.com/Bicuspid_Aortic_Valve_Disease.html FWIW I belive the connective tissue problems, has moe to do with vessels and tissue being more weak or fragile than in other people AND the other organs than CAN be affects or seem to happen in many people with BAV..of course that is the non technicall answer.

Again, I do think Children and youn adults are the group of people that they do tend to reccomend the Ross for and have pretty good results, I'm not sure all of the reasons why, but know a few children who have had pretty good experience with the Ross... I guess i would want to know how much experience his surgeon has with the Ross procedure and how his patients are doing., and IF they reccomend the ross ..why.I also believe that having 2 mech valves is one of the things that can, increase the odds of having complications

 

[sarahsunshine]

Thanks for the sympathy and support.

Lyn, I hope to get to some more reading that you sent after the little ones go to bed.

As for the surgeon, he is definitely top notch (Dr. Ivan Rebeyka), but I don't know how many Ross procedures he's done. I think lots. It's on my list of questions for my husband to ask at pre-surgery on Friday. Fortunately, that is not one of the things I'm worried about (but maybe I should be).

As for the reason to do the Ross procedure, they are getting less and less from my perspective. I mean, if they are now allowing trans-catheter aortic valve replacement approved by FDA (for certain cases), then if Steps-son will need future aortic valve replacement, then the chances that it could be minimally invasive trans-catheter procedure is also quite likely... Or, as has been pointed out, they could put in another mechanical valve and he would possibly never need another surgery...

Oy! It comes down to the size of valve that they can put in. And I HOPE that they can put in an adult-sized valve.

I think that this is more stressful than the actual surgery. Can I just get anesthetized for the surgery too? I think it would be less painful.

 

[Fundy]

Not in a million year would I consent to a Ross Procedure. ever. and forever.

Why cut up a very good valve...why??? there's better alternatives.

But then again I'm also 99% forever. Anyone else with me?

 

[Lynlw]

Thanks for the sympathy and support.

Lyn, I hope to get to some more reading that you sent after the little ones go to bed.

As for the surgeon, he is definitely top notch (Dr. Ivan Rebeyka), but I don't know how many Ross procedures he's done. I think lots. It's on my list of questions for my husband to ask at pre-surgery on Friday. Fortunately, that is not one of the things I'm worried about (but maybe I should be).

As for the reason to do the Ross procedure, they are getting less and less from my perspective. I mean, if they are now allowing trans-catheter aortic valve replacement approved by FDA (for certain cases), then if Steps-son will need future aortic valve replacement, then the chances that it could be minimally invasive trans-catheter procedure is also quite likely... Or, as has been pointed out, they could put in another mechanical valve and he would possibly never need another surgery...

Oy! It comes down to the size of valve that they can put in. And I HOPE that they can put in an adult-sized valve.

I think that this is more stressful than the actual surgery. Can I just get anesthetized for the surgery too? I think it would be less painful.

Here is a pretty good article from 05 in the newletter for Adults with CHD international society http://www.isachd.org/newsletters/fall05.pdf the article start on page 2

 

[sarahsunshine]

To answer the question of "Why the Ross procedure".

As far as I understand:
1. Keeping an autograft heart valve in the Aortic location would improve circulation (area of valve), and put less stress on the heart chambers and aortic arch
2. A bio-prosthesis in the pulmonary location would last much longer than a bio-prosthesis in the Aortic location.
3. Having two mechanical valves increases blood trauma.
4. Avoiding two mechanical valves on the same side of the heart seems like a good idea... but don't know why it would be better than having two intact valves in stead of one.

Lyn,

Thanks for that paper on the Ross procedure. Good to see a (more) positive side.

In fact, at some point there was even discussion of a Ross II procedure - putting the pulmonary valve in the Mitral valve location. The theory there was to eliminate the need to potentially go in the heart to reach the mitral valve in future surgeries. I think that one has fallen off the discussion table.

 

[sylviayasgur]

hi sarah,
i am one in favor of the ross procedure. maybe i feel this way because of the surgeon joey had_ paul stelzer_ who is an absolute genius. the man was ahead of his time and other doctors have recommended him as a brilliant surgeon.(others here have used him as well)
the rp is often recommended for children in that the heart grows with ease with these valves. in addition, anticoagulation is not a necessity (other than at the very beginning post surgery). there is a brilliant pediatric ross procedure surgeon at columbia presbyterian hospital in nyc. his name is jan quaggebeur :http://asp.cumc.columbia.edu/facdb/profile_list.asp?uni=jmq1&DepAffil=Surgery.
he has probably done the most rps on kids. you might want to consult with him.
not sure if i heard somewhere that the rp is contraindicated for those with other issues such as coarctation and/or connective tissue disease, please ask. i strongly recommend you contact dr. Q. he's supposed to be one of the BEST with kids.
wishing you all the best of luck. this is such a difficult time, we know. please keep us posted on how things progress.
sylvia

 

[Allisoninoz]

For what it's worth ... I had Ross Procedure nine months ago

For what it's worth ... I had Ross Procedure nine months ago

I've not visited this site for a while, but just want to say ... I had my RP done nearly nine months ago in Melbourne, Australia, by Peter Skillington, who has done nearly 300 of the procedures. He is having brilliant outcomes. I'm feeling better than I have for years. I feel very lucky and grateful that this option was available to me, meaning I don't have to be on Warfarin (which I know plenty of people are ok with, but I'm glad I could avoid it). While I'm 43yo, I understand that the RP can be a great option for children as the pulmonary valve will grow with the body.
If anybody wants to read more about my RP experience, google 'Allison Harding' and 'Ross Procedure' and you'll find an article I had published.

 

[Lynlw]

I've not visited this site for a while, but just want to say ... I had my RP done nearly nine months ago in Melbourne, Australia, by Peter Skillington, who has done nearly 300 of the procedures. He is having brilliant outcomes. I'm feeling better than I have for years. I feel very lucky and grateful that this option was available to me, meaning I don't have to be on Warfarin (which I know plenty of people are ok with, but I'm glad I could avoid it). While I'm 43yo, I understand that the RP can be a great option for children as the pulmonary valve will grow with the body.
If anybody wants to read more about my RP experience, google 'Allison Harding' and 'Ross Procedure' and you'll find an article I had published.

Wow can't believe its been 9 months already. Glad to hear from you