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Slow Moving Diagnosis: Part 2 – Consult with neurology

We scheduled an MRI in preparation for Robert’s Neurology consult. While there is no cure for most neurodegenerative diseases, knowing what type of disease your loved one has can help set the guideposts you’ll need to navigate behavioral and health changes. An MRI can narrow the diagnosis and focus the navigator. 

Meeting Dr. Franks

60 years old with salt and pepper hair, bushy eyebrows, and a 5 o’clock shadow at 1 o’clock in the afternoon, Dr. Franks rose to greet us. His cramped office held shelves of medical texts and stacks of neurology journals – some new, some several years old – askew and in various states of disorganization. Post-it notes lined his monitor. He specialized in the progression of various brain diseases.

Dr. Franks introduced himself and then got down to business. Initially, he directed questions to me almost as though Robert was not in the room, which put me off. I deferred to Robert for answers more often than I might have had he not been so obviously excluded. But after collecting information from me, Dr. Franks turned to Robert for a more probing interview. We covered much of the same ground we’d covered in our initial visit with Dr. Green. Then Dr. Franks logged into his Epic portal, pulled up Robert’s chart, and swiveled his monitor around so that we could see it.

Images tell the story

Dr. Franks patiently reviewed the pictures of Robert’s brain pointing out areas of concern.

“You can see the tarry, black shadows have replaced the healthy, bright gray tissue seen in the rest of the image. Here you can see a pronounced loss at this dark hole in his right temporal lobe where the stroke is presumed to have occurred. You can also see an asymmetric loss of brain tissue in both frontal lobes, with a more pronounced loss here, on the right. His brain is shrinking. Neurons in the degenerated areas are no longer functioning.”

Still no clarity

Concluding the MRI image review*, Dr. Franks asked if we had any questions. Robert did not. He was far enough along in his disease progression that he did not understand our concern about his cognitive function. He wore a benign smile and blinked his big blue eyes appreciatively without recognition.

I asked, “Could the same disease process that caused the stroke be causing the frontotemporal degeneration?”

“No,” said Franks, tipping his head toward us for emphasis. “The shape of the damaged area of his right temporal lobe could indicate a stroke. But I see no functional evidence of stroke.” 

The news was overwhelming. I struggled to express a coherent thought. I wanted to ask for a miracle, “Can you make the degeneration stop? Please make it stop,” but instead voiced a more pragmatic, “What should we expect from this point forward?”

“It will depend on the results of neurocognitive function tests and Robert’s differentiated diagnosis, information the MRI can not provide.”

I appreciated Dr. Franks’ candor; he did not pretend to have all the answers to the questions I asked. 

No good news

Arriving at a specific dementia diagnosis is complicated. Clinicians rely on inadequate diagnostic tools to put the puzzle together. The MRI showed us in black and white that a neurodegenerative mechanism was at play. 

The stroke deliberation turned out to be a bit of red herring in the larger disease picture. A stroke would have been a “better” diagnosis; we could make lifestyle changes, Robert could be prescribed medications, we could be vigilant. 

Neurodegeneration is an accident in slow motion. I was sick to my stomach. What we were facing was outside our control. The accident was already underway. 

Dr. Franks referred us to Neuropsychology.

*A March 2023 article from the American Roentgen Ray Society (ARRS) details the distinct images associated with different types of dementia. You can access the article here.

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