Stanford Opinion & discussion "To replace or not replace AV"

Here is the summary of my conversation with Dr Lewin. He is sending me a copy of the letter.

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The team Looked at the cath and echo findings. They agreed that Wren did need 'intervention'. Surgery should be done relatively soon given the parameters.

In particular, he needs relief of subaortic narrowing and supra-valve narrowing.

Approach:
They were cognicent of the small size of the valve but felt could potentially be spared and were hopeful and inclined to take the more conservative approach of leaving in the valve.

In leaving the valve behind they know its not going to be functional long term...

[Dr Lewin's comment: Of course it is preferable to leave in the AV in a young child because the alternative is not optimal but I am very worried about the valve....]

After the surgery for the repair of the SAS and supra-valve stenosis we will test the AV valve gradient and the fallback option, should we have an unacceptable gradient will be the Ross-Kono procedure.

[Dr Lewin spoke with Dr Cohen (Seattle Surgeon) about this approach and they are concerned about the issue of multiple bypass runs and potential cardiac dysfunction as a result of this strategy. If the AV gradient is too high they would have to put Wren BACK on bypass and expose him to further risk of heart, brain damage. Overall, a much longer run on bypass increases the risk considerably. Obviously, they are tolerant of a higher degree of risk in surgery while we feel more conservative there.

[Dr Lewin continues...."In a small child I am always in favor of saving the valve...BUT in this case we have already had intervention done on the valve -so I have added concern about leaving a valve that already have intervention on.

Also, Dr Cohen said that he can potentially get in an adult size valve which would delay the need for replacement...]

HANLEY: Go ahead with Ross-kono

[Dr Lewin: "Up here we are really concerned about the Ross-Kono for patients with a bicuspid aortic valve (BAV). It used to be thought that BAV was an isolated phenomenon but current dogma is that it is more of a global tissue abnormality and we have seen a fair bit of literature to show that patients with BAV have early deterioration of the (pulmonary valve) PV in the aortic valve (AV) position because it was never meant to do that sort of work in the high pressure AV position and it has similar deficiency as the BAV in terms of tissue composition.

so people are feeling more and more uncomfortable about doing the RK procedure on these patients. If you call around you will find people willing to do it, but its not widespread anymore.

It may be that that was a more generic statement about replacing the valve.. but...

Now, the Pacific NW seems be to endemic for AV disease so we have a lot of experience seeing what happens long term when you intervene in the AV and we are pretty nervous about that whole procedure and what Dr Cohen was recommending was a bio-prosthetic valve - a metal scaffolding with a valve in the middle which is better than pure animal valve - it degenerates slower than pure animal valve.

His answers to some of my Qs:

Q: How do they decide whether the valve should be saved?
A: In making the decision on whether to keep the valve they look at:
Real valve size.
Looking at leaflets, how thick, how pliable, how much motion.]

Q: Would he be on Coumadin with the bio-prosthetic?
a: No, It tets to the point of what is the best choice - mechanical valve you get adult valve size but you require anti-coagulation but not with a bio-prosthetic.

Q: What is the timing? You said "soon" - what does that mean
A: Its not a set time. If we did nothing he may be OK in a year or he may have a rhythm disturbance which would be [long pause] catastrophic.
Q: You mean he could have a heart attack and die?
A: Well, yes... or serious damage to the heart...

Q: Dr Hanley is very highly regarded. Why would he recommend the Ross-Kono if it is falling into disrepute? Could we call and ask whether he would do another kind of valve replacement?
A: Well, he wrote ROSS-KONO on the report and he didn't just write this off the top of his head so that is what he thinks we should do. We could call and ask but... well, this is what he thinks here. I presume he thinks that the articles, the data, is flawed and that we can 'get away' with the Ross Kono in the presence of BAV disease. I don't know....

My thoughts:
I am out of my depth in making this decision. Clearly, Dr L leans toward Dr Cohen's views. He is concerned about the Ross-Kono. I don't like the idea of a Ross-Kono either but I trust Dr Hanley's reputation. I like the idea of staying here but if there is a judgment call to be made I err on the established judgment of expertise - Stanford BUT I confess I have been swayed by this information about Ross-Kono and BAV PLUS neither of us want the R-K and another valve-replacement. I like the idea of a longer term more conservative appraoch.

BUT both surgeons present their approach as more conservative. Dr H's team are more conservative because they want to save the valve. Dr Cohen will also save the valve if he looks at it and thinks it may last a while [he said that too] BUT he is more suspicious of it right now. He feels that avoiding a long period on bypass AND another re-operation soon is more conservative.

Who is right? I Dunno.

I have set up an appointment with Dr Lewin for MONDAY 5th at 9am. Josh and I will talk through the issues.

AND

A Second Opinion on this mess with Dr Krabill at Swedish. Her earliest opening is September 18th but I can phone for cancellations "as often as you need to" said the receptionist.

Wait, I need to call again immediately.

Perhaps I am too wary but I feel that while our doctor here is fabulous he cannot be the source of the dispassionate advice I need right now.