When this happens, I never know whether I should be frightened or enraged.
I saw him in the office for follow-up, 10 days after an ED visit for prolonged severe headache. Before his visit, I reviewed the ED evaluation. They described constant severe L temporal pain with nausea with tenderness to palpation on the left temple but no palpable temporal artery. A detailed physical exam, including heart, lungs, abdomen, extremities, pulses and skin was described as normal. It had been going on too long without rash to be shingles. The ED note also stated that a ’12 point review of systems was negative’ but didn’t specify anything about what questions had been asked. A CT scan showed no mass lesion and the normal ESR of 22 effectively ruled out temporal arteritis. A phone conversation with the neurologist resulted in a repeat CT, this time with IV contrast, which successfully eliminated an aneurysm. The diagnosis was tension headache and he was sent home on indomethacin.
He described to me having had several weeks of pain and ‘a funny feeling’ in the parietal area above and in front of the ear but also to some degree in the back of the head, only on the left. It fluctuated from quite intense with nausea but no photophobia to mild but aggravating, but had never been completely gone since it began. It would peak with certain head positions and movement. In fact, he had adjusted his chair so he could watch the TV without having to look left of midline. It bothered him driving and woke him up during the night at least once. It had started over the weekend he had done some gardening on his hands and knees, but he didn’t recall any specific injury. Tylenol helped some for several hours. There were no other neurologic symptoms and otherwise he felt great. He hadn’t taken the indomethacin because he had read the precautions and was concerned about his history of GERD and ulcer disease.
With notable irritation, he told me he was pretty sure it was from his neck. His pain was in the same place he had had pain and numbness 12 years earlier that had proved to be related to cervical disk disease and spinal stenosis and had resulted in successful surgery. “I told him it was the same as the pain I had before from my neck, and he said it couldn’t be from my neck because my neck didn’t hurt. I told him my neck hadn’t hurt the last time either, but he just repeated that it couldn’t be from my neck.” He also noted that he was told he had a tension headache but that no one talked to him about what that meant (or asked him if he had any questions) and when he went home and Googled it, he found the description inconsistent with his symptoms.
On exam, he had a well healed 6 inch midline posterior neck scar and markedly restricted rom testing of his neck, with looking more than 5 degrees to the left exacerbating his pain. He had no extension of the neck above horizontal (baseline for him after his surgery) and with his head tilted to the left, attempts at extension caused a dramatic increase in his pain. His strength, sensation, reflexes, pulses, mental status were normal.
I asked about the exam in the ED (curious about the discrepancy between my findings and the ED note) and he said: the PA checked my strength, sensation, reflexes, pulses and listened to my heart and lungs, and the ED doc checked my eyes and made me look back and forth and poked at my temples, but that’s all he did. No one tested rom of the neck.
The patient and I agreed that this was almost certain to be related to nerve irritation coming from his neck in the area of his previous surgery. I tried to mitigate his palpable anger at the ED by pointing out that their job was not to make a diagnosis or find successful treatments for everything, but to find and treat emergencies, and that their evaluation had been very complete and accurate in this regard. My patient just shrugged and said: “They can still listen to the patient, right?”
We started with tylenol (he was correct that NSAIDs in a 71 year old with diabetes and a history of GERD and ulcer disease was risky) and physical therapy. After 2 weeks he was 30% better, but then improved no further with PT, and two injections of Botox near the greater occipital nerve resolved his symptoms completely.
Things about this that concern me:
- The history is the most important diagnostic tool we have. Even in the ED. The patient knew the diagnosis and tried to help his clinicians but they were too focused on their perspective to listen. (That’s more charitable than the alternative: they were too arrogant to accept information from a patient.)
- Both the history and exam as recorded were a fantasy. I have never met a (live) 70 year old patient with a negative 12 question review of systems, and the exam described things as normal that were clearly abnormal, and other things that were never examined.
- The documentation effectively justified a high-level ED charge (lots of bullet points in history and exam and high-complexity high-risk medical issues) but failed utterly to help the patient.
- He was there about 7 hours, from arrival to discharge. Surely there was time to do - and document - a good history and exam?
- The diagnosis was pretty clear after 2 minutes of letting the patient (uninterrupted) describe his symptoms. Two more minutes filled in a few key details and 3 more minutes helped eliminate nasty or weird alternatives. The exam confirming it was simple, short, low tech and took another 3 minutes. The lab and CT followed by CTA cost about $10,000 and were arguably unnecessary - and involved risk.
- The treatment recommended was inappropriate, based on an incorrect diagnosis (not a surprise) would have been ineffective and unsafe.
- The patient instructions were computer-generated boiler plate and not pertinent either to the putative diagnosis or the actual diagnosis. They did include a number of items mandated to score well on quality audits: smoking cessation advice, for example, not terribly pertinent in this gentleman who had never smoked.
- The patient came away with a very low opinion of the hospital, the ED, the ED physician and the (unnamed) neurologist. (“Next time I’m going to Portland.”)
- This is a set of problems that are baked into our current approach to care. I know the hospital, ED nurses and ED physician well. They are competent, committed, skilled and dedicated. But they are captives in a system that pays lip service to patient-centered care but is basically designed to sell tests and treatments to as many people as possible in as short a time as possible.