Unshelved by Bill Barnes and Gene Ambaum
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Saturday, January 21, 2012

I learned a new yet horrific word today

Courtesy of Rebecca Skloot, in her book The Immortal Life of Henrietta Lacks: pneumoencephalography

“I later learned that while Elsie was at Crownsville, scientists often conducted research on patients there without consent, including one study titled "Pneumoencephalographic and skull X-ray studies in 100 epileptics." Pneumoencephalography was a technique developed in 1919 for taking images of the brain, which floats in a sea of liquid. That fluid protects the brain from damage, but makes it very difficult to X-ray, since images taken through fluid are cloudy. Pneumoencephalography involved drilling holes into the skulls of research subjects, draining the fluid surrounding their brains, and pumping air or helium into the skull in place of the fluid to allow crisp X-rays of the brain through the skull. the side effects--crippling headaches, dizziness, seizures, vomiting--lasted until the body naturally refilled the skull with spinal fluid, which usually took two to three months. Because pneumoencephalography could cause permanent brain damage and paralysis, it was abandoned in the 1970s.

"There is no evidence that the scientists who did research on patients at Crownsville got consent from either the patients or their parents. Bases on the number of patients listed in the pneumoencephalography studyand the years it was conducted, Lurz told me later, it most likely involved every epileptic child in the hospital including Elsie. The same is likely true of at least one other study called "The Use of Deep Temporal Leads in the Study of Psychomotor Epilepsy," which involved inserting metal probes into patients' brains.”
[Thanks to the folks at Goodreads for putting up the quote. I'd already returned my copy of the book to the library and needed the passage, although I had to correct some typos.]

Elsie Lacks, the oldest daughter of Henrietta and David Lacks, died at age 15 in 1955 at the Crownsville, originally known as the 'Hospital for the Negro Insane'. Elsie was diagnosed with mental retardation, epilepsy, and cerebral palsy, although she may have inherited the family trait for deafness. It's hard to tell what her exact diagnosis should have been. Children at the time were often misdiagnosed and locked away in institutions rather than receiving help. Skloot's description of conditions at Crownsville are chilling, and a photograph provides a window into how Elsie was treated, although there is a lot of room left to the imagination of the reader for just how bad it was.


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Anonymous said...

While pneumoencephalography was definitely an awful (though quite common) procedure, as terrible as it was it was still definitely better than the alternative: exploratory brain surgery. This said there are many inaccuracies in the quote. Obviously this book was never reviewed by a trained physician (which is quite troubling given the subject matter covered). For instance... Pneumoencephalography certainly does not involve drilling holes into the skull (ventriculography, an earlier procedure from which pneumoencephalography was developed did). Pneumoencephalography never really produced "crisp" x-rays and the images that were produced had to be read by a very skilled radiologist. Finally and most importantly, pneumoencephalography was not abandoned because it could cause permanent damage but because better and non-invasive neuroimaging techniques were invented starting in the 1970s which made it obsolete. Namely, these were CT follwed by MRI.

Anonymous said...

1. the problem with the procedure being described in the book isn't that it was better than the alternative, it was that it was done in a research setting without consent of the patient or their parent/guardian. the guardian was never informed that such research could be conducted if the patient were turned over to the facility as a ward, and that it was done repeatedly for the purpose of furthering medical research, and not as a diagnostic procedure for helping the patient.

2. to save money, because they were 'just negros', it is highly doubtful that researchers used any form of anesthetic. patients were probably just strapped down tight in those weird PEG chairs designed for the procedure.

3. it was abandoned due to neuro research that showed its cost outweighed its use in most instances, this coincided with the invention of head CT scanners which further gave reason to give up the procedure.

4. This book was reviewed by doctors. Not every doctor is going to be 110% familiar with every single procedure, ESPECIALLY radiographic ones. So yes, it wouldn't surprise me that any doctor that reviewed this passage was unaware that PEG didn't involve drilling holes in the skull.