You are not alone and this is a great place for information from folks who " have been there",,
As to out of network doctors ,,, I have seen folks on here get approval for treatment out of their network. Not sure how they did it, but the insurance company decided the best treatment for the patient was by the requested doctors. So maybe upon appeal you would be able to use a more experienced team,, if you choose to go that route. I think the surgeon's office ( such as at House clinic and I'm sure others) will help get the approval.
I'm just throwing that out there as info,,, not trying to endorse anyone nor any mode of treatment,,,
Good luck with your decisions and consults,,,