Tuesday, October 3, 2017


Byron's appointment with the surgeon Dr. Feldstein will be on Tuesday, the day after Byron's case is presented to the surgical board.  We should learn a lot in that appointment on Tuesday.

I confess I am a bit nervous.  What I am hoping for is that Byron is approved for the Functional Hemispherectomy on Monday and the appointment on Tuesday is to discuss logistics, outcomes, and to make a plan.  What I do not want to happen is that they either postpone again for some other intervention that is likely not to work, or suggest a much lesser surgery.  The reason why I do not want the latter is that from everything I have read, including the scholarly articles I can get my hands on, is that these "Lobectomies" or partial surgeries have a very low cure rate and the Hemispheretcomy ends up needing to be done down the road anyway.  They may err on the side of caution with this due to their fear that Byron will lose some critical functionality, but that caution may be specific to this hospital. The Cleveland Clinic, one of the top places to have this surgery in the world, weighed in on Byron's case last year.  The Dr. there said they would not hesitate to go immediately to the Functional Hemispherectomy and that this was the best course of action. We can't choose this hospital however, because Byron's insurance is limited to New York based hospitals.

So we are very much hoping that from here on in we have smooth sailing towards the cure that will give Byron the best possible life - seizure free!

1 comment:

  1. Saying prayers for the green light and everyone committed to the same strategy and best long term outcome.



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