@sunnyflower

Can you list the questions you have about your conditions and diagnoses, either things you aren't sure you agree with or don't have adequate information about? Questions that the world's best physicians might answer, that may be outside the scope of your doctors? One thought I have (if I can write it before I forget it) is that if I were your doctor, I'd appreciate it if you asked me, "If you were to refer me to a specialist, what specialist do you think would be the most helpful", or some other question framed in similar words. That would affirm my professionalism, rather than putting me on the defensive.

I'm pretty sure that your doctors know how highly you think of them, but verbalizing it ensures that they know. Most people appreciate that kind of affirmation, and a lot of people will go out of their way to dig deeper for such a person. If any of your doctors have a clear picture of your overall health challenges, they could perhaps know someone, or know of a particular kind of specialist who would be likely to be able to give you solid answers.

Even though driving is painful for me, if I heard that there was a possibility of hope from a doctor in Portland or Seattle or one of Mayo's clinics, I'd probably do all I could to get there somehow. Probably isn't a certainty, though. Our son wants us to fly out and visit them in Indianapolis, but my feet say NO! Not just the flight, but going to all of the places they'd want to take us while there...They don't understand. I'd rather be hurting at home than travel 2000 miles so the pain could be worse doesn't sound like much of a vacation to me. But if I knew there was a doctor there who might actually help me, I might make the trip.

I'm still a new patient with the neurosurgeon who's going to do the decompression, and I've been really impressed by her, so for now, I'm going to give her a chance. I don't know if she has anything new to offer, but I want to find out before I move on to whatever Mayo or Portland could possibly do for me. My neurologist did refer me to OHSU for some tests that aren't available where I live, and I think he wouldn't hesitate to refer me to a specialist in Oregon or California or the UK if he thought it would benefit me. That shows to me his level of care and concern for me. I think I could say the same thing about any other doctors I see, with the possible exception of the ophthalmologist.

Your kind nature doesn't want you to offend your doctors, but I suspect that any one of them would jump at the chance to find you the help you need. Are you praying about this decision? Silly question. Of course you are, and I'll join you in that prayer.

Gotta get off my feet and into bed. Lidocaine will cool the nerves in my feet so I can go to sleep.

Jim