A king has the blind men of his village brought to the palace. He asks them to describe an elephant after allowing each one to touch a part of the animal.
The king then asks them, “What sort of thing is this?”
The one who feels the head calls it “a pot.” The one who fingers an ear says “a basket.” The trunk is “a plow,” the foot “a pillar,” the tail “a pestle,” and the hairy tippy top of the tail “a bush.”
This parable reminds me of the experience too many of us have with doctors who only can see or hear one part of our story.
When my trigeminal neuralgia began, the textbook definition of it was very specific: pain in the correct area of the face, the pain has to have a triggering event, such as a light momentary touch to the area, and the patient must be 60 years of age or older. The only way it occurs in someone younger is if the person has multiple sclerosis.
I had the correct area. The pain was initiated by the slightest of touch. I was a textbook case. Except that I wasn’t, because I was only 25. Therefore, it could not be trigeminal neuralgia. Except that it was.
My youth made the diagnosis impossible to believe or accept for many of the doctors. In fact I was diagnosed on a date with one of my residents. He kept trying to touch my face. I kept saying, “Don’t touch me there!”
He looked at me funny and said, “Where exactly can’t I touch?” As soon as I mapped out the area he said, “You have trigeminal neuralgia.”
We were not at the clinic and the rules didn’t apply. He just saw and interpreted, instead of relying on the textbook.
Often we are sent to specialists who too often forget to look past their own areas of interest and expertise.
The rheumatologist looks at the negative results of the blood tests that indicate an auto-immune disorder. So he overlooks the disease(s) that do not show up in blood work.
The neurologist does a full neurological exam, finds no issues, and does not look past the exam results.
The psychologist listens to what we have to say and how we feel emotionally about the pain, and pronounces us depressed.
It is also a potential issue with surgeons.
With trigeminal neuralgia there are a number of surgical options. Does the surgeon recommend one procedure over all the others? Is that because it is the only one he does or does most often? It is important to know, because then the surgeon is only addressing and acknowledging one area of the elephant.
I often say we should not debate or argue with our doctors. I stand by that. At the same time we need to stand our ground.
We may need to remind them of the parable of the elephant and ask, “Have you looked at all of what I am bringing to you or are you blinded by a specific bias or area of expertise?”
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 was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.