So sorry you're going through so much pain. I thought I had one also a
number of years ago and I remember how scared I was each time I got a MRI for
a number of years.. Mine turned out to be scar tissue. I hope you can
find and go to the expert and they were will do something if they know it
will help. I met several people briefly at Craig who had gone through the
surgery. I was just there for a rehab evaluation. That is where they found
what they thought was a syrinx
.
You always think that when you are quad, at least you will not change in
what you can do. You feel fortunate compared to compare to a person with a
degenerative disease. We don't usually know anything about what a syrinx
can do. I went to a syrinx workshop during that time. A lot of the top
surgeons were discussed, but unfortunately I don't remember their names.
There is a website. Many of them were not already quadriplegics.
So sorry you are having to go through this. I know how important it is to
find the right surgeon.
Dana
