I'm sorry you are having to go through this struggle!
This is a wonderful forum full of caring folks!
I see you've found the Spinal forum here at NT....
Although I am not familiar with your particular condition, I'm sure you'll get responses soon.......
In the meantime, try doing a 'search' at the top of this forum and maybe it'll lead you to posts people have discussed in the past regarding your struggle......
I wish you the best!
Rae