Vino,
Welcome to our community! (Sigh) going through the steps of an accurate & helpful diagnosis takes a lot of time and energy.
As you have started to see, finding a surgeon that has the experience and capabilites in multi-level ADRs is actually a challenge here in the U.S. Some docs can do "off label" or even compassionate use, (two levels) but one usually jumps through many hoops to get the "planets to align." It's a symptom of a bureaucracy that is gridlocked (controlled) by insurance, lobbyists, business, the FDA, etc. Call it healthcare rationing, or something worse...but that's the state of ADR in the U.S. today.
Take the time to read the posts in the various forums, I encourage you to network among patients across the U.S. & world who share their thoughts & experiences. Feel free to email or PM them as well, most will repond in time -- it is a devoted and caring community.
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