Friday, October 3, 2008

Krabill conclusion to the affair of the many consultations

I have just spoken with Dr Krabill. She was supportive of our plan to go to Stanford although she did not say anything about not being in Seattle.

Her recommendation was:
1) Try and save the valve.
2) Kono-mechanical valve replacement if required.

Details of Conversation
Her team looked at Wren's echo and angiogram I had provided. All agreed it is a tough case to work on a plan of action. She presented the options and even after discussion they felt it may be very hard to tell best route till OR and the anatomy.

Wren's issue is defined as: Severe multi-level left ventricular outflow tract obstruction.

Most literature recommends taking least invasive option first. This would be a repair and valvotomy - go through valve to look at LVOT - resect fibromuscular tission. Also see if there is any valve fusion not obvious from Echo that can be repaired. They would open and patch ascending aorta and then re-evaluate.

If that does not work... its a toss up.

If you do a Ross Kono - how long will aortic valve and pulmonary replacement last? If you do Ross - you transect aorta and sewing ring around that and may create aneurysm at this point.

* I said we would not favor a Ross-Kono for reasons discussed earlier *

Mechanical versus tissue valve replacement.
A mechanical valve requires coumadin therapy but a tissue valve will wear faster than mechanical. In Dr Krabill's experience with tissue valves in other locations: "We find leaflets curl and leak and then don't open as freely and do leakage and backflow."

Thus, a Mechanical valve is better if Kono required. It has fewer complications and should last much longer.

"Thinking of my 20 years of being a PC and there are just a handful of children that need a Mech valve in toddler or preschool age but the Coumadin is manageable. I was thinking of a girl who has both aortic and mitral valve problems and ended up as a ... under a year of age.... I think she was 6 or 9 months of age. And those valves lasted till she was a teenager and she outgrew them and needed replacement on size. She was healthy and active and her recovery was remarkably quick."

Outcome
We are going to Stanford.

1 comment:

tamusana said...

wow - great that you have something concrete to work towards now (even if that 'something' is rather daunting). I just sent you an email about possible Palo Alto accommodation contacts through my friend Emily... definitely follow up with her, don't feel shy. She's fabulously nice and would love to help you if she can. And yes, she's expecting to hear from you.

love
Tam