Hi Nicci,
I hope someone else can give you a better answer than I can.
I had surgery in 2011. It didn't work at all. However, symptoms are increasing pretty rapidly this year.
It feels like starting all over again. 1 step forward 5 steps back.
Though there are some I have heard have some pretty good stories, mostly I hear stories of disappointment.
I just don't think the medical community knows enough. (or anyone else for that matter) All treatments for these conditions are considered controversial even if docs do them often.
We all 'look' so normal and there aren't enough of us for them to pay much attention to it.
And kids...there is much more success and attention paid to kids with these diseases. And a greater success rate with treatment..I personally think its because they are still 'green' and can regrow bone and nerves and neurotransmitters and just generally heal faster than 'grown ups'.
But that's me babbling out my my own frustration..lol
I sure hope, with all my heart, that you find a better answer than I have.
supportive hugs to you.