I have not had face pain from the trigeminal neuralgia for over 12 years. Because of that I do not like to say I have trigeminal neuralgia (tn) despite the eye pain that continues.
I am not sure if my fight is with myself or with the name. I do not want to think of myself as having trigeminal neuralgia because I do no longer have neuralgia in the area of the trigeminal nerve.
As soon as the first pain came so too came the eye movement and usage pain. That eye also became exquisitely sensitive to light.
After the first neurosurgery, all the pain was gone, including all eye problems. Then, 3 months later, the pain came back in my face. The eye pain came right along with it.
Ultimately I lost the face pain. I still have phantom pain and some 'tics' from that but nothing that I could or would call trigeminal neuralgia.
It is the eye pain that keeps me from working. When asked by surgeons "What do you want to get rid of; the eye pain or the face pain?" my answer was always the same. "It's the eye pain that keeps me from being in the world, from working. That is what I need to have fixed." I always felt the touch induced pain, the spontaneous pains and even the constant pain could be handled. The eye pain never seemed to be tamed, no matter what I did or tried. If you cannot read or ues your eyes for more than a few minutes, there is no way you can work.
Tonight I was thinking about it for the gazillioneth time. How can this eye pain be fixed? Every doctor I talked to, neuroophthalmologist, ophthalmologist, neurosurgeon, neurologist, all said the same thing. "I don't know why you have it, what caused it, or what we can do about it. I'm very sorry." That never made any sense to me. How can someone have something that cannot be fixed, not because they cannot fix it, or at least help it, but because to a one they would add, "I have never seen this before."
I have no idea if being able to categorize or name it makes a difference, but I realize my thinking about it has been wrong all this time. It came with the TN, it went with the TN, and it came back with the TN. So. Maybe it is TN. That has not made it respond to the things that have been done for my TN. Naming it does not seem to help. That started me thinking about some other pain disorders.
RSD, regional sympathetic disorder, now renamed Complex regional pain syndrome (CRPS). Has naming the specific signs and symptoms helped those who suffer from this strange malady? Fibromyalgia. Does that name make a difference for those with the cluster of symptoms that define fibro?
I think it has, not enough to get cures but to get more docs to look into them, more pharmaceutical companies to research and develop drugs more specific to the disorders. And more and more docs to stop naming patients malingerers, lazy people looking for an out or for drugs, or just plain crazy when they come into their offices with the same stories about their pain, where it is, what started it, how they feel.
What's in a name? A rose is a rose is a rose - is my eye pain merely trigeminal neuralgia - but it also may be a very unique rose requiring attention different from any other one.