Close your eyes and see – stroke sequelae versus functional neurological disorder in a physician 2023 Weil et al

Abstract

The first author was a left-handed, 51-year-old nephrologist who experienced a neurologic event. She underwent neurosurgery complicated by hemorrhage. Post-operatively, she developed persistent vertigo and unilateral tongue pain which persisted for over five years. Early neuroimaging revealed expected encephalomalacia but no neuroanatomical basis for my symptoms. A functional neurological disorder was suspected, and she was seen by several psychiatrists and psychotherapists. However, she suspected a neuroanatomical lesion would better explain her unrelenting symptoms. After seeing many neurologists, a neuroanatomical diagnosis was finally made. The theory and practice of medicine mandates that subjective complaint guide the modality and interpretation of objective evidence. The final neurologist knew where on neuroimaging to look because she was guided by my complaints – vertigo and unilateral tongue pain. In her case, detailed scrutiny of neuroimaging by a neurologist, after encephalomalacia and gliosis were fully completed, gave a more accurate neuroanatomical diagnosis and a more realistic prognosis.

Paywall, https://www.karger.com/Article/Abstract/530753

 

"The theory and practice of medicine mandates that subjective complaint guide the modality and interpretation of objective evidence."

I'd settle for gathering objective evidence.

 

Um, no. It should be this way, but obviously it isn't even close to be. Words on paper are just that, words. Unless they're enforced, they have zero value. And this is clearly not enforced, in fact there are multiple sub-disciplines of medicine built around the exact opposite of this. While claiming to, of course, which makes it so much worse, because the pretense is exactly why it's just that, a pretense.

 

Now appears to be open access and a good read —

I continued to experience unrelenting tongue pain and vertigo with every step. I was also very depressed and disappointed, so I wrote an irate letter to the neurosurgeon, worried about a cranial nerve injury. “It is inconceivable,” he wrote back, “that the pain in your tongue is related to your stroke since that is like the other side of the continent.” His words, not mine. He then refused to see me ever again in follow-up. He never diagnosed a functional neurological disorder, but he implied it in his letter.

As part of my rehabilitation program, I was required to meet with a psychiatrist and a psychotherapist twice a week. They saw that I was very angry and noted that the pain in my tongue had started after the trauma I had experienced with the stroke. They suspected a factitious disorder related to my anger and desire to gain attention from the neurosurgeon and neurologist. The psychiatrist started me on duloxetine for depression and escalated it to very high dose. It had no effect except to worsen my vertigo. She wanted to start me on a “mood stabilizer” but I refused. I was convinced that my pain was organic.

[...]

On most days, I was resigned to believing my psychiatrist, that the tongue pain was a somatic reaction to my anger. But on other days, I was haunted by the fact that the pain was unilateral. I saw several other neurologists including one who sent me to a pain class taught by a psychologist.

[...]

Finally, 5 years after the surgery, I consulted with yet another neurologist (the tenth? the eleventh?) – a brainstem expert. She personally scrutinized the most recent MRI and saw gliosis of the middle cerebellar peduncle. It was identical to the 1-year postoperative MRI. She could see that traction from that lesion was affecting the principal trigeminal nucleus and distorting the spinal trigeminal sensory tract of the medulla, affecting lingual sensation. She reviewed the imaging with me but stopped short of ordering another MRI with fine cuts because it would not change the diagnosis, prognosis, or treatment. My symptoms of unilateral tongue pain and persistent vertigo were at last explained by a neuroanatomical lesion that could be seen on imaging. The findings of the brainstem neurologist were later confirmed by a neuroradiologist who also saw elongation and thinning of the facial nerve and of the vestibulo-cochlear nerve though both were clinically silent. He also saw a thin trigeminal nerve on the right, consistent with Wallerian degeneration.

[...]

I look back at my experience and wonder how often doctors explain neurological disease as psychiatric illness. Shockingly, neurologists did not seek a structural basis for my symptoms nor considered it important to pursue this possibility. I am a physician with medical knowledge and experience, and yet this happened even to me.

Discussion
Medical epistemology entails rational, inductive, scientific reasoning following the method first proposed by Descartes. Medical epistemology requires evidence from the subjective experience of the patient as well as objective evidence from the physical examination and/or laboratory tests, and/or imaging. In my case, vertigo and unilateral tongue were my subjective complaints, and objective evidence had to come from neuroimaging. The practice of neurology lies in interpretation of subjective complaints in order to know where in the brain to look for a neuroanatomic lesion. Without any objective evidence in my case, my diagnosis was “functional neurological disorder.” Indeed, differentiating cerebral ischemia from functional neurological symptom disorder can be difficult, especially when conversion disorder makes up one-third of neurology outpatients. When ischemia occurs in the posterior circulation, differentiation is even trickier.

Most of my neuroimaging was performed acutely, before encephalomalacia and gliosis had completed, and not repeated for a year. Even after the 1-year MRI was obtained, neuroradiologists were distracted by my very large injury – encephalomalacia of the right cerebellum with ex vacuo dilation of the fourth ventricle – and missed the adjacent tiny finding – middle cerebellar peduncle gliosis affecting my right trigeminal nerve. Brainstem strokes affecting cranial nerve nuclei are sometimes very small and are particularly hard to see on neuroimaging. In my case, the brainstem neurologist had high clinical suspicion and thus was able to locate the lesion.

Now, in retrospect, it seems obvious that my neurological injuries resulted directly from intraoperative sacrifice of a bridging vein, hemorrhage, perivascular edema, and infarction and indirectly from intracranial hypertension, cytotoxic edema, and cell death. [...]

In my case, right unilateral burning pain resulted from distortion of the right spinal trigeminal tract. The pars oralis is the site where lingual pain fibers run and enter the spinal trigeminal tract. Trigeminal pain of central origin is termed “atypical trigeminal neuralgia” and differs from classic trigeminal neuralgia because the pain is constant and not episodic. This type of pain results from a small, medullary infarction and from a lesion in the middle cerebellar peduncle, reflecting its anatomic proximity to the spinal trigeminal tract and principal sensory nucleus. In contrast, typical trigeminal neuralgia of central origin correlates with lesions higher in the pons and affects the nerve roots of the trigeminal nerve.

Objective evidence, appreciated by sight, is undeniably true. Without any visually discernable evidence, my symptoms were considered psychiatric and not neurologic. But the brainstem neurologist knew where to look even before she examined the MRI because a core principle of neurology is knowing from the complaint where in the brain to look.

 

great example of the issues with FND and other "functional" syndromes.

 

My bolding...

Haemorrhage - I wonder how well the effects of this were treated. Did they stick up a bag or two of blood, infuse it, then think "Job done"? (I don't know how, or how thoroughly, hypovolemia is treated.)

Tongue pain - tongue problems are common in B12/folate deficiency. And depending on the anesthetic gases used during her surgery she could have developed B12 deficiency just from that :

Vitamin B12 Deficiency and Anesthesia

The woman could have iron deficiency anaemia or B12/folate deficiency anaemia or perhaps persistent hypovolemia (low volume of blood). If she is/was still menstruating her ability to overcome these problems with just a normal diet could be severely limited. [I just realised she couldn't have been menstruating since she had had a hysterectomy and oophorectomy not long before her "neurological event".]

Edited to add : Did you see how much surgery she underwent before the surgery mentioned in this paper? Jaw-dropping!

 

Here is another one for @dave30th another misquote about prevalence.

• This should be a warning for all doctors about the diagnosis of fnd and the possibility of organic illness. So fnd is all in the mind of the doctor.

 

Uh. Seems to have missed the point, that she is one such statistic. Not that she was, she still is. It never gets removed from the record. Reminds me of people who push policies that discriminate against a population, when they are themselves part of that population. But they're "one of the good ones", the people they know who are not part of the group even say so. Not that it protects anyone.

This is IMO why most MDs are so obsessed with how important and significant psychosomatics can be, they see very ill people labeled with it all the time and it's clearly very serious. Mislabeled, but they miss that entirely, the entire construct is an extension of GIGO, where the output feeds into the input as a loop. The snake feeding on its own excrements. No different than seeing epileptic attacks as demonic possession reinforcing the belief in demonic possession. And if you maintain the ritual to cast away the demon long enough, eventually the crisis ends.

The simple truth is that no one has ever had the ability to tell any of this apart. They simply outsourced their failure onto some BS heuristic that frees them of being the ones making the mistake, while still committing the mistake. It just frees them of the knowledge that they not only made that mistake, but increased the odds of future mistakes being made. While harming people, but it's only real harm if it comes from the Harmm region of Germany.

History is filled with that exact hubris. It's part of why we are so bad at dealing with most politics, why most solutions actually make problems worse, even when there are better solutions that have been shown to work. Admitting the mistake is the worst thing those in charge can do for their credibility, it's only a mistake once admitted. It's true in politics, and it's sadly just as true in medicine, because medicine is very political, and even less accountable.

 

The lesson only sticks as long as you're in the hole. Once you're out, all the lesson goes away, and it's all too easy for people to convince themselves that got out of the hole by being smarter. People rarely see the role of chance in outcomes.

I really thought those recovered from LC in general would make a difference. Wow was that wrong. We're still clothed animals for the most part. Our animal instincts drive us far more than higher reasoning ever does, and that makes us selfish.

 

Whaaaaat? Say it ain’t so. I simply refuse to believe this could possibly happen.

But seriously this is an infuriating account. It’s also an invaluable example, pure gold.