The Tip of My Tongue, and the Roof of my Mouth

Who is the weak link in the communication between doctor and patient on the symptoms of Central Pain. This author feels it is the patient.

It would be impossible to praise my doctor enough. Even before there was an animal model for Central Pain, even before they had figured out what the mitogen activated kinases, the Protein Kinase C, the fetal ion channels (Nav1.3) did, and before the TRPV-1 research proved that Central Pain patients were continually brutalized by all the pain chemicals, MY doctor believed me.

If I said something, he believed it. Is this not the grandest thing one can possess in a doctor. He affords you the dignity of being a patient, rather than scrunching up his nose and showing he is taking your pain complaints with a grain of salt, because YOU are speaking gibberish.

Not this doctor. He listened to everything, he wanted to know, and YET, for the longest time he really didn’t know anything about central pain. My descriptions of the burning dysesthesia were too vague, my explanation for the lightning pains was too mysterious in this age where doctors don’t see neurosyphilis anymore (and therefore don’t see the lightning pains). It was all too common for me to simply refer to the “pain” and he had no chance of catching up to what I was thinking about.

And yet, with all the crummy verbal descriptors I handed him, he believed me. This is a prize beyond rubies. It was what I needed to survive. If he could credit my illness, I could find the strength to go on.

Today I sat in his office and for the first time, we talked a little about the portion of my central pain in my head and face. He never once asked me why I hadn’t mentioned it before, sparing me the embarassment of admitting to being the truly horrible medical historian I am , which all of us with Central Pain are.

We should stop using the word “pain” entirely. That would force us to give better descriptions. It is just too easy not to do the mental work to communicate to our doctors what is going on. We are sick, we don’t feel good, we didn’t really want to endure what it takes to get to the office and we really lack the energy to reflect on what might communicate our pain clearly. This is no excuse. We are betraying our brothers and sisters with Central Pain if we do not learn to speak clearly, even if central pain has no vocabulary. Especially if it has no vocabulary.

The topic was my tongue. He said I was not the first who was so hypersensitized that even the wind blowing on my skin could be painful. And somehow that led to my telling him that it hurts to talk, because when the tip of my tongue bounces off the palate, it rather quickly causes evoked burning in the top of my tongue, where it makes contact with the palate. The letter “t” is the worst, but “d” can do the job also.

I happen to be one of the few whose cervical injury was high enough to catch the descending tract of cranial nerve V (the trigeminal nerve). This injury to the quintothalamic tract (descending CN V) put burning dysesthesia in my sinuses, corneas, dura, mouth. lips, nose, etc. Even other central pain patients (the most common lesion statistically being in the lumbar region) tend not to get it, not to be aware of what I am feeling inside my mouth.

I told him how the letter “t” was not my friend. He did not question this. He merely found it remarkable that the human nervous system can become so sensitized. He gave me some new literature on stroke in utero by Carmichael which shows that brain injuries in fetuses can heal, but not in adults. Carmichael is trying to find out what prevents brain plasticity in adult brains in the hopes he can help stroke victims recover better.

As office visits go, this one was not remarkable, and that was what made it so very remarkable. I told my doctor something new and over the top on sensitization, but he believed me. Would you not like to have a doctor like that. Even after years, when you finally realize you have not mentioned something really quite major, he does not become annoyed at your omissions, and the scant help you have given him in understanding. He accepts what you say as true.

If as patients we will all try harder to be specific, to write it down as it comes to us, to be articulate and give it all to our doctors, they will do a better job of taking care of us and letting the world know about our condition. I am the weakest link in that office, and I am so grateful to have a doctor about whom I can say that.

Thank you, My Doctor. You have honored your oath to care for the ill. It is a fine thing to keep your word, a finer thing to lift human beings, especially those who are very badly in need of it. I am the Samaritan who was lying in the ditch who was passed by until someone came along. You did this, even though my pain is invisible. There was nothing except my scarcity of clothing to hint at my plight. You are a Good Samaritan.

Thank you, and thank you to the many doctors who have provided good care for me. Even those who weren’t very good at it, probably did a better job of being a doctor than I did of being a patient. I wanted them to read my mind. Now, I realize that is not fair. We must help save ourselves. We must develop verbal skills we do not have. We must communicate.