The surgeons who are the most experienced with vascular ES are Dr Costantino in NY, Dr Cognetti in PA, Dr Nakaji in AZ & Dr Hepworth in CO, so unfortunately none close to you. How they’d be with treating your son, I don’t know- this is often so hard for our members to get diagnosed & treated, so I can only imagine what it’s been like for you with your son, it must be very scary & exhausting… Dr Nakaji does require quite invasive testing (a dynamic venogram with pressure gradient manometry) which sounds like it would be stressful for your son, so might be a no…
If Dr Osborne is prepared to do the surgery and can remove the styloids at the skull base, then hopefully it should help. Some of the other vascular doctors do check for anything else compressing the IJV, like other muscles, to make sure the blood is flowing well through it, which I don’t know that Dr Osborne does. Regarding the cost & insurance, some members have been able to appeal and go out of network, there have been some discussions about that, @vcp02 posted some helpful info:
Dr Osborne- Blue Cross Blue Shield Out of Network Waiver-2025 - Welcome / New User Help - Living with Eagle
Otherwise Dr Hackman in NC has done lots of successful surgeries, I think he takes the styloids off close to the skull base, & Dr Fargen also in NC.
Sending you a hug 
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