I too suffer from atypical facial pain. My pain is located deep behind and surrounding my right eye. I have had it called many names, but suffice it to say, my condition is very rare and poorly known. I went though years of medications, nerve blocks, and other therapies, with little to no success. My neurologist first suggested a stimulator to me nearly two years ago now. She referred me to a well known neurosurgeon in the area, who has is known for the pioneering work that he has done with trigeminal neuralgia.
Anyways, the neurosurgeon looked me over & told me very frankly that my condition was very rare and unlike what he has dealt with in the past, however he believed that I might be a candidate for a stimulator, but he wanted to do more research. Well, he went off and did his research, and came back concluding that yes I was a candidate for a stimulator trial, although in all his research, he did not come up with a case similar to mine.
Anyways, I did my own research, and decided that I wanted to go ahead with the stimulator trial. We set up a date, but unfortunately my insurance denied it the day before. It ended up taking 6 mo and loads of appeals before I finally won my case.
I underwent the trial in July, followed by permanent implantation the following week. I am so thrilled with the results of my stimulator. It doesn't take away all the pain, but it usually helps reduce it by 30 - 70%. I still have my bad days/days where the stim doesn't seem to help, but they are much fewer than they were before the surgery.
I'd be happy to speak to you about
any of this. It's probably best to communicate by email, just because I seem to be at a crazy stage in my life & don't always make it to check HW as often as I used to. My email is listed under my profile. I'd also be happy to share with you my own research into the use of peripheral nerve stimulators for facial pain.
My leads are located on the supraorbital and infraorbital branches of the trigeminal nerve (above and below the eye). As far as we know, this is the first time that this device has been used to treat chronic retrobulbar eye pain.
Post Edited (skeye) : 2/20/2011 8:24:05 PM (GMT-7)