A Whole New Reality: Johnathon’s Story

How 16-year-old Johnathon VanDrie learned to experience life through a whole new perspective with the help of outpatient therapy.

Johnathon VanDrie just wanted to play football, ski, and revel in the things any high school sophomore tends to enjoy. But unlike most teenagers, Johnathon quietly suffered from severe headaches, particularly while wearing his football helmet. In an effort to normalize his pain so he could participate in his beloved sports, he’d disciplined himself to tolerate these headaches, blaming his “misshapen” head.

“I actually just chalked it up to because my head was more squarely shaped and that was the reasoning for it,” he said.

In the late summer of 2020, the headaches worsened. Johnathon now needed ice just to get through football practice. Then, one fateful September day, midway through a football game, Johnathan felt pain radiating from his neck through his fingertips. Then his arm went numb.

My arm is all messed up, he told his trainer.

His arm, it would turn out, was not the trouble. Instead, after a battery of tests, the official diagnosis would be a malformation in his brain: A Type 1 Chiari malformation.

Johnathon’s Rare Brain Blockage

Chiari malformation is a rare condition where a portion of the brain tissue called “Chiari” (pronounce Key-R-EE) pushes past the normal boundaries of the cranium and down into the spinal canal. This lodged tissue blocks proper flow of the protective spinal fluid that circulates through the spinal cord and brain, preventing signals that would normally travel from the brain to the rest of the body. Spinal fluid can build up around the tissue blockage.

Just as Johnathan had experienced much of his life, headaches are the most common symptom of Type 1 Chiari malformation. Numbness, challenges with coordination, balance, speech problems, and more can also follow.

Not every person with Chiari malformation experiences these symptoms. If they do, surgery is often needed to remove a small portion of the skull and create more space for the brain tissue, restoring proper circulation of spinal fluid and reducing head pressure. In Johnathan’s case, the Chiari tissue had wrapped itself around his spinal cord so tightly, circulation to the tissue was completed severed. His compressed brain had also borne a hole through his dura (brain membrane). As a result, Johnathan’s spinal fluid was flow just 40% of what it should be.

Feeling Funny

Despite a long, complicated surgery in July 2020, Johnathon's outcome was successful. The headaches? Gone. But Johnathon was now wrestling with a gamut of new sensations due to the more free-flowing spinal fluid that had restored communication between his brain and spinal cord. Sensations that most people take for granted felt surprising, if not strange, to Johnathon. Sensations that had felt dull the first 16 years of his life.

“Three days after surgery, he was petting our cat, and he just stopped and looked at us and asked, ‘Are cats usually this soft?’” Joy VanDrie, Johnathon’s mom, explained. “He had the idea that it was soft, but he was never able to actually feel that.”

Unfortunately, not every new encounter was as pleasant. Johnathon quickly found himself fatigued by the surge of newfound sensations, among some other uncomfortable symptoms.

“From that surgery, we knew that he had to heal for a while, but coming out of the healing process he was feeling so many new sensations, and he had just so many new things going on,” Joy said. “We also noticed that he was starting to get some weird tremors and different things like that. So his primary care physician and neurosurgeon decided it was time to work on some occupational therapy and some physical therapy.”

The Real Journey Begins

Joy and Johnathan headed to Mary Free Bed at Munson Healthcare’s outpatient clinic in Cadillac, where he could access the multiple therapies he needed under one roof.

“We’re able to have both services in the same facility, otherwise we would have had physical therapy in maybe one practice and occupational therapy in another practice,” Joy explained. “It was nice as a parent and as a patient to be able to have those coordinated and those therapists coordinating between the two.

Johnathon’s occupational therapist, Amanda Lee, guides him through core and arm strengthening, endurance, and coordination.

“He has some tremors, and as he gets fatigued, his tremors increase,” Lee shared. “So the goal is to see how far we can work with him before those tremors start to increase to help build that endurance.”

Johnathan has been working with Lee since December 2020. Thanks to Munson Healthcare’s expanded partnership with Mary Free Bed Rehabilitation Hospital, Lee has the additional support of a variety of rehabilitation experts.

“Mary Free Bed has a very rich history in the rehabilitative spectrum, so there's a lot of resources at our hands that if we need to pick the brains of other therapists, we have that availability for sure,” Lee said. “The more resources you can give a patient, obviously the better.”

The Road to Recovery

Just several weeks into therapy, Johnathon has made significant strides. He no longer feels as exhausted following his therapy sessions or other activities like school that, prior to therapy, tended to tire him out. He’s met his physical therapy goals and continues to work toward his occupational therapy goals with Lee.

“He has his whole life ahead of him yet, so to be able to see that improve and hear him say, 'Yeah, I was able to this much today, and I didn't need a nap after I did all of these activities,’ that’s been very rewarding,” Lee shared. “And it's nice to be able to see that as he moves forward, he'll be able to lead a fairly regular life.”

While Johnathon is still reconciling with the fact that he can no longer participate in his two most favorite things  – skiing and football (at least not in the traditional sense) – he remains very encouraged about his progress.

“It's left me more time for other things. It's broadened my view of what I can and can't do and what I might want to pursue and whether I still want to attempt to be a part of the football team or anything like that,” he shares. “It's been a long process….[therapy] has increased my endurance for it all.”

Click here to read and watch more amazing rehab patient stories like Johnathon’s and to learn more about our special partnership with the nationally recognized Mary Free Bed Rehabilitation Hospital!