Aortic valve replacement

[bnsah]

My 12 years son is suffering from a lysosomal storage disorder ( diagnosed as Mucolipidosis II or I-cell disease). A month ago, doctor found that he is having severe aortic valve leakage / Prolapse. As per doctor he needs valve replacement. Now, our doctor is not clear about what will happen after few years down the line. My doctor is thinking to do 'Ross Procedure' in this case. Can any give me details about the Ross Procedure ? Was there any such case like my son who is suffering from I-cell disease and going for Aortic valve Replacement ?

B N Sah
India

 

[Maryka]

I logon to VR early, US Eastern Time Zone. I can give you no advice, but someone will see your post soon and get back to you soon! They may move your email to a different section of this forum, I suspect. In any event, you and yours will be in my thoughts and prayers!

 

[nngbwh]

Sorry to hear your son is going through this. Hopefully someone here can give you better advice.

 

[AgilityDog]

My understanding is with the Ross procedure, they remove another valve (pulmonary, I think,) and replace it with an artificial tissue valve. Then take the pulmonary valve and put it in the place of the aortic valve. This avoids necessity for anticoagulation therapy, long term, as a general rule. I'll bet there's a sticky on here about it. If not, try google for as much information as you can absorb.

 

[mauiboy]

Info on Ross Procedure

Info on Ross Procedure

Hi B N Sah. Sorry to hear about your 12 yr old son's encounter with I-cell disease. While I am not familiar with that disease, I heard about the Ross procedure from some of the doctors at Stanford University where I had my AVR on May 6. I asked if this was possible for me but in my case they went for a straight aortic valve replacement. Dr Bruce Weitz has done over 90 Ross procedures where the pulmonary valve is used to replace the malfunctioning aortic vavle, and is in turn replaced by an artificial valve. In younger patients, the procedure helps the artificial valve last longer because there is less hemodynamic pressure/turbulence in the pulmonary valve position vice the aortic valve. The main thing is that the doctor performing the surgery should have lots of experience in performing this Ross Procedure as it involves replacing two main valves at the same time. Hope this helps you with the decisions concerning your son. I wish you the best!:cool2:

Best Wishes,
Eric

May 6, 2010, Carpentier-Edwards bovine pericardium Perimount Magna Ease 23mm

 

[SEOULSOUL]

Hi BN,
Dr. Devi Shetty for Narayana Hrudalya is best in ROSS Procedure and trained in Guys Hospital.
Best Wishes
Seoulsoul

 

[Rick]

The Ross Procedure is an alternative aortic valve replacement procedure favored in younger patients because apparently the replaced aortic valve can grow with the body. It has higher operative mortality, so you want a surgeon who has done this repeteadly, at least 50-100 times; but lower risks of reoperation than bioprosthesis for kids and no anticoagulation like mechanical valves. The MD here which I have heard has done most is Dr. Paul Stelzer in New York. Do a search on him and email him. He actually answers emails. If you cannot travel to NY, at least he may give you useful advice and look for the most experienced person as surgeons get better with experience in complex surgeries.

My best wishes to you and your son.

Best regards,

Rick