George’s Story: Part I

The beginning of the end started when a conscientious neurology resident read a routine chest x-ray and called the head of neurosurgery for a consult. “The chest x-ray also showed that the collapsed vertebrae haven’t healed well.  It looks like they may be pressing on his spinal cord, possibly causing his foot-drop.  We recommend back surgery to put in a rod, which will relieve the pressure so he can walk,” said the chief.

It was four days before Thanksgiving.  “We don’t want to waste any time. We’ll stop the blood thinner now, and operate on Wednesday.”

A year earlier, George had been diagnosed with Lewy Body Disease (LBD), which is the second leading cause of dementia in the U.S. after Alzheimer’s.  It manifests as a constellation of symptoms that include both the cognitive effects of dementia and the motor effects of Parkinson’s Disease.  George’s neurologist at the time told us he would live another 10-15 years and die of something unrelated, like pneumonia.  LBD isn’t a killer; it’s an inexorable destroyer.  For the next year, our lives were an unending ride on our personal out-of-control roller-coaster.

George was enthusiastic about walking again, but I was concerned about the toll the surgery would take on his already low-functioning body.  The day before the surgery, I asked his current neurologist to look over the records, visit George in the hospital, and give me his opinion about the value of going ahead with the surgery.  I didn’t hear from him again, so it was my decision to go ahead based on very little information.

The surgery appeared to have gone well, but had it?  A few days later George was transferred to a rehab facility.  He never walked again.  He quickly deteriorated both mentally and physically and, less that four months later, he died of Lewy Body Dementia. It was 15 months since his diagnosis, and not 10-15 years.  My beloved husband of 27 years.  Gone.

• Why didn’t the surgery help George?
• Why did he die so quickly?
• What had happened to George in the year between diagnosis and surgery?
• What was his medical status leading up to surgery?
• What are the lessons for the health care system?
• What are the lessons for you?

These questions and more will be answered in Part 2 of George’s Story.