After meeting with our cardiologist again this morning to discuss the Seattle and Stanford options we still do not know whether we are on Team Stanford or Team Seattle.
Sept 18th 9am - Phone conference with Dr Hanley
Sept 18th 1pm - Second opinion with Dr Krable
Sept ?? - Early surgical consult with Dr Cohen
Here are Dr L's responses to my questions about the Seattle Plan to save valve if possible but otherwise replace the aortic valve with a bioprosthetic:
1) If BAV is a connective tissue disorder causing dilation of the aortic root, what complications would this cause with a bio-prosthetic valve replacement?
Yes, this could become a problem. In Wren's case we don't see any dilation of the aortic root at this point although we wouldn't expect to. In fact, he has restriction in this area. But over time if this became a problem it would affect the valve in the same way as a pulmonary graft would be affected (leaking, etc) but at least his pulmonary valve would not have been damaged - it would still be in place.
2) In your experience, what is the likely lifespan of a bio-prosthetic valve from either deterioration or being outgrown?
The growth and degeneration are two processes that occur but we expect it to last about 10 years at this point. It can be less - say from 5 years but some last longer. In the Ross procedure the pulmonary valve has lasted more than 20 years in some people but it is more likely to last 20 years in adults, say from age 20 to 40 than it is to last from Wren's age to age 20.
3) What size valve is likely to fit Wren and what are the techniques and risks of inserting a larger valve in this position?
The surgeon can make pretty much any size valve fit. There are risks - you can ask the surgeon about those. The main risk is that if the valve is too big, we occasionally see this, it can obstruct the natural motion of the mitral valve because it needs something to force against but it can't be too big. So sometimes we see this post-op and we have to go and fix it.
4) What procedure will be used for the sub and supra valvular stenosis (patch? carving?)
We would use a Kono Procedure which would cut away the septum here [will insert picture] and patch that area. It will be sewn back to muscle in about 270 degrees (this is a three dimensional area) but about 90 degrees will be a patch.
5) What is an average recovery time for this procedure?
Ah, it depends. About 10 days... 12 days?
6) Could you put me in touch with someone who can give me information on the Number of cases and outcomes for this procedure?
That is something you will have to ask the surgeon. You can speak to Dina and schedule that surgical consult sooner [currently for 2 days prior to surgery].
When I asked Dr Lewin what he would do he didn't actually give us a recommendation. He emphasized that he had been part of the decision which is now "Dr Cohen's approach" - to do the valve replacement not Ross if the valve is not salvageable, implying he is party to one side of the controversy. He also gave us a lot more background on his views - how he has worked with and respects Dr Hanley a great deal, used to propose the Ross-Kono for all patients in this situation, saw many PV failures, changed his views and now is opposed in cases of BAV.
He said that if we don't reach our own decision about where to go we really have to decide "who to trust".
On one hand he feels that we have to choose a procedure because "this is a point of divergence" between Cohen and Hanley. He feels that Hanley will say that in my patients I don't see this problem [degeneration of PV in A position in patients with BAV] and perhaps "I do the surgery in a way to.." and we will have to see whether we are persuaded.
On the other hand we can consider the institution because "heart surgery is a team sport." On this count, he argued that the institutions themselves have similar levels of infrastructure and outcomes post-op but that the determination should be on the surgeon.
"They will make similar decisions with a different set of eyes"
I said that I felt popular views were that Stanford is better equipt and does higher volumes than Seattle. He felt that much of this information was "a popularity contest" although he laughed about saying this from a lower ranking on the List of Best Hospitals and questioned what volume was necessary for expertise to build up. He feels that the 12 bed CICU constantly full gives the Seattle team enough expertise to do a good job.
But we should also consider the level of family support we have here vs Stanford "in case a 2 week hospitalization turns into 2 months".
Josh was quite persuaded by this argument - he feels the advantage of being near home more keenly. I am more impressed by Hanley's reputation of excellence.
I have asked for copies of the notes and the cath tape to take to our NEXT second opinion on September 18th. We are going to see another cardiologist - Dr Kimberly Krable - who saw Wren prenatally.
We are hoping she agrees with someone so we have help with this impossible decision.
Do you want to help? We could decide by poll. Apparently there is so much doubt, projection, controversy and big UNKNOWNS that it would be as good an approach as any.