A Pained Life: Tyranny of the White Coat

By Carol Levy, PNN Columnist

I saw a new neurologist this past week. He was a lovely man. Unfortunately, I was referred to him in error. He does not treat trigeminal neuralgia, so this was the first and last time I would see him.

That saddened me. Not only because I really took a liking to him, but because he did some things I have seen far too rarely.

He started our appointment by saying, “I have read your history.” Not only that, he had tried to contact my neurosurgeon to find out why I had been referred to him, since he did not treat facial pain. He had gone to the trouble to prepare for the meeting despite knowing he was not the right specialist for me.

Like many doctors, he dictated his notes into a recording device while we were together. From what he said, it was obvious he had read my history and recalled much of it. I was amazed when he would stop and correct himself.

Even more surprising was when he got something wrong and I shook my finger to signal “No.” Immediately he stopped and asked, “What did I get wrong?”

I’d explain the pain was on the left side of my face, not the right, and in the upper part, not lower. He listened and corrected his notes.

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Usually most of the docs who do this dictation, ostensibly to make sure they get the information right and have me there to confirm, do not care if what they say is wrong. In fact, my main experience has been docs who say patently wrong information.

For them, I would hold up my finger, shake my head and mouth the words, “That’s wrong.” Invariably, the doctors would shake their heads and silence me with a “Shhhh.” No effort is made to correct or even ask what is wrong with their notes. As a result, the wrong information stays on the record and subsequent docs then approach us with preconceived ideas about things that are not true.

The last pain management doctor I saw decided I had had a history of major depression. He did not ask if I had a psychiatric history or diagnosis but decided this on his own. He did not dictate his notes while I was with him, but I saw it when I went onto the online portal where after-visit summaries are posted.

I thought he must have gotten confused. When he asked me about my family history, I had mentioned a relative who had a diagnosis of depression.

At the next appointment, I asked him to change the record. ““That is not my history,” I said. “You must have been thinking about my relative.” He seemed to agree -- and yet that “history” remains on my official record.

Is it an arrogance that too many docs develop? Is it a hardness, where the patient is almost irrelevant to the entire process? Is it because the patient is not a “professional,” so they can't be trusted even when it is their own history they are giving?

I don't know. I do know that it’s a sad state of affairs when you take a liking to a doctor because they took the rare action of actually listening, hearing and respecting you.

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Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.