‘Rural Albertans need help because we’re not getting it’: Medicine Hat radio host with debilitating brain growth pushes back

A radio host says a growth on his brain is stealing his voice and he can't get a neurosurgery appointment for months. He hopes government will step in.

A longtime Medicine Hat radio host says a growth on his brain has left him unable to speak or eat normally, but he has been told he must wait nearly four months for a surgical assessment — a delay he fears could leave him with permanent nerve damage.

Broadcaster Kim Johnston, who spent 30 years on air, says he first noticed his speech deteriorating about a year ago, but in recent months it has collapsed to the point where he can no longer host his syndicated rural radio show.

“Over the past, number of months, I’ve had speech problems, and it was just really difficult to to put my finger on what exactly, has been happening on air,” he said. “It’s been fighting through, clenched teeth and just muscle spasms and so on.”

He says he pushed his doctor for months to order an MRI.

“It was back in May that I pointed out to my physician that, you know, if a patient with speech issues and, they’re progressing, why hasn’t MRI been done after all this time?” he said. “It wouldn’t have happened if I hadn’t have really pushed for it.”

When the scan was finally completed on Oct. 4, Johnston says it revealed an arachnoid cyst pressing against his trigeminal motor nerve, the cranial nerve that controls jaw movement and speech.

Since then, he says the symptoms have worsened dramatically.

“I haven’t eaten solids in months,” he said. “Usually my speech collapses within a few words… when I eat (it’s) the same thing -- I can usually get a couple of bites in, and then the muscle condition just spasms and closes everything.”

Canadian clinical guidelines call for far faster action

Urgent neurology referral criteria from the Cumming School of Medicine at the University of Calgary state that adults with:

• new or progressive bulbar symptoms (including difficulty speaking or swallowing), or
• progressive focal neurological deficits,

“should receive an urgent neurology assessment within five business days.”

Waiting

Johnston’s case involves both progressive bulbar dysfunction and a known intracranial lesion compressing a cranial nerve. He says despite that, he was told his neurosurgical assessment will not happen until late January — nearly four months after the mass was found.

The delay, he says, is frightening.

“It’s terrifying. Absolutely terrifying,” he said. “The longer this condition is allowed to go unchecked, the greater risk of permanent damage. And I feel or feel that it is very possible that the damage, that damage may be well under way.”

The decline has forced him onto disability.

“30 year career. 30 year career?” he said. “Connecting with a rural audience is what I’ve always done… I never once thought that I’d be in a position where I really need my story to be heard and told.”

The neurological collapse, he says, has upended daily life.

“The medical condition, without a doubt, is debilitating. It affects not only me, it affects my family. It affects my relationships,” he said. “It affects my marriage and literally every aspect of one’s life when a neurological condition strikes.”

Turning to social media to pressure officials

Unable to get traction through traditional channels, Johnston has now taken to social media in an effort to pressure provincial officials to intervene and speed up his care.

In a Facebook post, he wrote:

“Each week my condition worsens. My ability to speak, eat, and work the career I’ve built, is slipping away.”

He appealed directly to decision-makers:

“I’m using this platform to ask Premier Danielle Smith, Alberta Health Services, and Adriana LaGrange for help.”

And he questioned why a known brain mass causing rapid neurological decline is being left for months without specialist review.

“I don’t need privilege. I need urgent coordination. Leadership that recognizes a brain growth compressing a cranial nerve deserves immediate review, not months of limbo.”

Johnston says he contacted the health minister, the premier and Alberta Health Services privately, but has received no reply.

“As far as, reaching out? I have sent messages to the health minister. No. No response,” he said. “I’ve sent messages to the mayor, actually to the premier, and no reply.”

Gaps in the system for rural Albertans

He says his case underscores the gaps rural Albertans face when they develop complex neurological conditions.

“I’m not about placing the blame on any political thing,” he said. “Rural Albertans… need help because we’re not getting it.”

CTV has reached out to Alberta Health and Alberta Urgent Care and has yet to receive a response. This story will be updated if or when that is received.