Ross procedure

[cpt278]

A friend of mine called to say his Dr. is reccommending the Ross procedure.Severe regurg AV
He is 44 yo and in very good shape otherwise.
I emailed my surgeon and he stated long term data (Ross)not to good. Most develop valve degeneration and aneurysm in the area within 10 - 15 yrs .
???






AVR/AAR 11/05
St Judes

 

[PJmomrunner]

If your friend is also in NYC, I hope he's talking with Ross guru, Paul Stelzer, MD. I believe it's true that those of us with primarily regurgitant bicuspid aortic valves are typically not good candidates for the Ross Procedure. I'm not sure if the same applies to tricuspid aortic valves.

 

[Tom F.]

You can go online and get to the Ross Registry where there is a ton of data about the procedure. While there are some people that have unfavorable results, I have never seen anything that indicates that most people develop problems. I think that is an overstatement.

 

[Susan BAV]

Is your friend diagnosed as bicuspid?

Is your friend diagnosed as bicuspid?

I really don't know about bicuspids and the Ross procedure--although some bicuspid members here have had the Ross procedure--but at least some bicuspids evidently can have an issue, to some degree, with connective tissue problems. I don't know if it can be as severe as the Marfan's issue and I don't know if there is a test for that outside of OHS pathology. My surgeon took a sample of my tissue during valve replacement and pathology said my tissue was a "little thin." There is a lot they are still learning in regard to bicuspids.

More information somewhat related to this: There was one older study I read, from 1994, that indicated Marfan's patients should probably have a tissue valve.

Also, what PJ said seems to be a very important issue, whether a bicuspid valve is primarily regurgitating or stenosed. But at least sometimes they're both.

 

[Lynlw]

Since I might be a candidate for this, I had searched the various sites & did not find a negative reference for bicuspid. I'm bicuspid with mod-regurg - at the moment, my cardiologist thinks I may be a good candidate for this at age 47 & in good shape (valve notwithstanding). Upcoming appointment with Dr Tirone David will confirm that but below are the indications & contra-indications from the Ross Registry - also cross referenced this with info supplied by a Ross patient here with information from John Hopkins. http://www.valvereplacement.com/forums/showthread.php?t=20173&highlight=ross+procedure

http://www.rossregistry.net/procedure/candidate.htm

Indications for Aortic Valve Replacement with the Pulmonary Autograft
•Patient (male or female between 11 and 50 years of age)
•Isolated aortic valve pathology (male or female)
•Endocarditis limited to the aortic root
•Athlete or young in whom anticoagulation is contraindicated and optimal hemodynamics is desirable.

Contraindications for Aortic Valve Replacement with the Pulmonary Autograft
•Advanced three vessel coronary artery disease
•Extremes of age (< 3 years or >70)
•Extensive multi valve pathology necessitating replacement of one or more valves
•Connective tissue disorders such as Marfan Syndrome
•Multisystem organ failure (pulmonary, renal, hepatic, etc.)

Maybe there are studies out there suggesting otherwise but I have not seen them yet.

I'm not an expert, just a Mom, but I believe the issue for biscuspid can fall under
"Connective tissue disorders such as Marfan Syndrome" for patient that HAVE BAVD since there can be an issue with the connective tissue. Which is why it is important to go to a surgeon who is an expert in the Ross to decide if you are a good candidate. http://bicuspidfoundation.com/Bicuspid_Aortic_Valve_Disease.html

 

[Turkey Hunter]

A friend of mine called to say his Dr. is reccommending the Ross procedure.Severe regurg AV
He is 44 yo and in very good shape otherwise.
I emailed my surgeon and he stated long term data (Ross)not to good. Most develop valve degeneration and aneurysm in the area within 10 - 15 yrs .???
AVR/AAR 11/05
St Judes

I don't think it is fair to state that most develop aneurysm or their valves degenerate.
I am one of the lucky few who has developed an aneurysm post Ross. But, If I would have had a mechanical that didn't include replacement of my entire arch; I woud still have a new one and be facing an eventual re-do.
Now, mine has stabilized and no longer growing....so I am lucky

My surgeon stated that if the medical community knew then what they know now, he would have still performed the Ross, he just would have replaced my entire ascending aorta.

Just my $0.02

 

[Lynlw]

As far as I can tell, there is no connection between Bicuspid valves & Marfan's syndrome. You can have one or the other or both. Obviously to determine if a patient is a candidate, a surgeon will review the results from various test to determine the viability of the procedure.

It's complicated surgery and like all surgery, has pros & cons. Based on my situation, if its an available option, I will choose this based on what I have researched so far. The surgeon will be the ultimate decision maker as to whether I'm a candidate or not.

I was not saying there was a connection betwen bicuspid and marfans, I was saying that BAVD could fall under the same category as tissue connective disease, that they used the example of Marfans for. From the BAVD site I gave the link to. "Current clinical and scientific studies are revealing that bicuspid aortic valve disease is not a simple valve condition. It increasingly appears to be a genetically based connective tissue disorder. An inclusive definition, listing the major areas of the body possibly affected, is needed. Not everything is understood today, but enough is known to identify several major characteristics of this condition"
The Ross procedure is a very good option for people that are good candidates for it.

 

[leecrowley]

I had similar concerns prior to my Ross Procedure (8/08/06). I talked with a lot of people and did a lot of research. I am very confident with my decision to get the Ross. Here are a couple of conclusions I came to.....

1)There are quite a few failed Ross' showing up now because there were many more "inexperienced" surgeons doing the Ross in the late 90's. It is an extremely technical procedure, and only the most experienced should be doing it.

2)These days, most (if not all) Ross' involve replacing the aortic valve and the aortic root. The root is also reinforced. Mine was reinforced with pericardium. This was not the case 8 or 10 years ago, which could be why some were unsuccessful.

At the time of my surgery, I was an active 37 y.o. male with BAVD and severe regurg. I am 13+ months post-op and doing extremely well.

Good luck,
Lee

 

[ALCapshaw2]

StretchL did extensive research on the Ross Procedure which has been detailed in his posts. He also has (or had) a web site with a photo-journal of his surgery.

Reading his posts (and viewing his photo journal) would be a most worthwhile endeavor for anyone considering the Ross Procedure.

'AL Capshaw'

 

[dlangton]

StretchL

StretchL

StretchL's stuff about the Ross procedure is found here:

Annotated sequence of photos:

http://www.stretchphotography.com/avr/images/

Research:

http://www.stretchphotography.com/avr/documents/


Stretch is a busy professional photographer but it worries me slightly that he hasn't put in an appearance on these forums for quite a while, and I hope he is doing ok.