We talked about taking out the implant and replacing it. I have concerns about that, could there be a risk of brain damage and would insurance cover it?
The implant was 100% experimental. I am not sure how it was paid for or whose, or if, fees were waived. He explained to me it would be considered a 'revision' so there should be no problem getting it paid for. The risk of damage would be negligible.
We talked about if it might be worth redoing the decompression procedures that had been tried by both Dr. Wilson and Dr. Osterholm (not MVD by Jannetta because of the damage from that procedure.) My concern was that being in the same area where all three of them had been could reinjure the facial nerve and I would have the 100% facial paralysis again.
He told me that another neurosurgeon would have to do it, that it is not something he does anymore, and that I would have to have an MRI before anyone would even consider it but I am not able to have an MRI because of the implant which means the implant has to come out.
The longer we talked the more complicated, and ultimately not complicated at all, it became.
He told me he actually could, and would, do a decompression procedure for me if he thought it should be done but he agreed there was too much of a chance of problems because of all the people who had been there already.
Replacing the implant, which seemed a possibility, not one I was sure about - to be sure- probably had a good chance of not helping again. I had already had that experience with the dorsal column stimulator when I lost that to an infection. It had worked 85%. Re-placing it in the exact spot gave me no benefit at all. The current implant could be replaced in the exact spot but that gave no guarantee the benefit would be the same, or happen at all. The suggestion of removing this one, that failed, and putting in a new one was now off the table.
The suggestion by another neurosurgeon, of trying a newer kind of stimulation, peripheral, was a thought. But this neurosurgeon does not do them and could only refer me out to someone in another state.
I questioned if this one, where the wires are placed directly under the skin in the pained area, would be possible since the pain is from anaesthesia dolorosa (a.d.) and the touch is unpleasant in that exact area. That was not the real problem. The problem is that, of course, it would not effect the eye movement and usage pain; but it would also have to be placed around where the a.d. pain is, in the lids, so that it would most probably not get the correct area anyway. Besides no insurance, so far, has been willing to cover it because it is also considered experimental.
He reiterated what everyone has told me, no one knows why you have your eye pain, and there is not much that can be done for phantom pain (a.d.).
Of course something was done, or the implant would not have helped to the degree it did.
"So there is nothing else to be done?" "I'm afraid not." he replied.
That is not an acceptable answer, so I intend to deny it. I will continue to look for some answer. Is that the way to handle it? I am not so sure. On the one hand 30 years + is long enough to finally come to temrs with my reality but it also seems like almost everytime I did, a new idea came along that did help, even if only a little.
Is refusing to give up on the expectation of an answer incompatible with accepting a current reality? It is not. It is a lot easier for me to write and say that the two are not mutually exclusive? It is. Does the fear that the reality invokes make it harder to give up hope? Yes.
At some point I am going to have to stop writing in the occupation box on forms, 'disabled, at present'. At some point, I will have to admit this is real and permanent. I am not ready to do that yet. Is that harmful, to live in the land of denial? That is a question I am not yet