My son Jacob’s love for reading was evident from a young age. Before he could even read, he’d sit with one of his Thomas & Friends books and his “reading glasses,” imitating my reading habits (well, minus Thomas the Tank Engine).
By the time he started kindergarten, he was reading at a third-grade level, and this love for reading continued throughout his early years. But then, almost imperceptibly at first, things began to change.
Emerging struggles
Initially, Jacob was an exemplary student who enjoyed school. However, during his latter grade school years, he began to say he disliked school, though his grades remained good. I did start to notice things, like his not attempting to answer questions on tests at times or not finishing homework.
He was clumsy and disliked playing sports, though I didn’t think much of it. By middle school, his grades slipped slightly, and he disliked reading. He also began saying he didn’t want to go to college.
I was puzzled. What happened to my once-avid reader and good student? Had he become unmotivated and lazy?
Upon entering high school, Jacob’s complaints escalated. He developed near-daily headaches and nausea, had trouble copying from the board, struggled to focus, couldn’t understand his homework, and became sleepy within minutes of reading. He thought he might need reading glasses, but struggled to describe his vision problems.
We visited an eye doctor, who prescribed reading glasses, but several months later, his eyes remained blurry. It was then he said that words also seemed to move around. His frustration mounted as he struggled to explain what he was experiencing, and I was unsure what to do next.
Turning point
One day, a conversation with friend and speech pathologist Marilyn Tonkin-Stickler changed everything. After describing my son’s situation, she mentioned her son had dealt with something called convergence insufficiency and said my son’s complaints sounded similar.
This sparked a research journey, and we stumbled upon a website discussing various eye issues. The site featured a quiz indicating Jacob had vision problems and video clips illustrating how these conditions appear for those with them.
As Jacob watched the videos, excitement replaced his frustration: “My eyes do all of those things!” He was finally able to explain what he’d been struggling to convey.
Fortunately, Marilyn also recommended several doctors specializing in these issues, and we were lucky enough to find one locally, Dr. Jacqueline Theis.
Diagnosis
Dr. Theis understands oculomotor dysfunction personally, having dealt with it from age 13 following a concussion. After repeatedly being told she had nothing wrong, her condition was coincidentally discovered while shadowing an optometrist during college. After being referred to a neuro-optometrist, her vision was rehabilitated within a few weeks. Frustrated, having struggled needlessly for many years, she decided to help others with similar conditions.
Jacob’s first visit with Dr. Theis involved an extensive series of tests, which revealed not just one but six different vision issues.
Dr. Theis diagnosed Jacob with accommodative insufficiency, meaning he couldn’t engage his near focus (the test results were consistent with the vision of a 48-year-old, although he was only 15); functional convergence spasm, meaning his eyes over-crossed with near-vision, causing dizziness during extended reading; vergence infacility, meaning his eyes struggled to transition from distance-vision to near-vision; saccadic hypometria, meaning he consistently undershot his intended target when his gaze shifted, leading to headaches; smooth pursuit dysfunction, meaning his eyes couldn’t track smoothly, inducing severe dizziness; and reduced vestibular-ocular reflex gain, meaning, although he had 20/20 vision at baseline, moving his head from side-to-side caused his vision to deteriorate, resulting in dizziness within 30 seconds.
During the examination, Dr. Theis asked if Jacob had any prior brain injuries or concussions. Surprised, I answered no, but then Jacob recalled a second or third-grade fall where he hit his head on our solid bedroom dresser. Dr. Theis believes this was the likely cause of Jacob’s problems.
Dr. Theis explained:
“Jacob exhibited classic post-concussive vestibular-oculomotor dysfunction. While it’s possible he had these since development, his symptom patterns and the provocation of physical symptoms like brain fog, dizziness, nausea, headaches, and fatigue are more common in traumatic etiology than developmental cases.”
Interestingly, after sharing Jacob’s situation with my aunt Kimber, she was shocked that she had almost all the same symptoms. She’s now in her 60s, but still dislikes reading, and her overtaxed brain induces sleep within minutes. She’d also opposed school, even avoiding college due to her symptoms. In all these years, no one ever put together her signs or considered a specialist. It leaves me wondering how many others have similar situations.
Road to recovery
Eye movement disorders can be pretty complex. Dr. Theis explained: “The etiology can be diverse, as every lobe of the brain, brainstem, and cerebellum plays a role in generating eye movements.” Severe cases may require treatments like strabismus surgery or prism glasses to correct eye misalignment.
Fortunately, treatment in Jacob’s case was not only simple, but Dr. Theis had a 95 percent success rate with similar patients. Amazingly, things resolve for her patients within weeks to months, and once settled, they’re resolved for good — there’s no ongoing or repeat treatment.
Dr. Theis shared:
“My treatment is atypical. Most, if not all of my colleagues, do in-office rehab, and the clinical trials on in-office vision therapy for developmental oculomotor dysfunction suggest that in-office is more efficacious. However, in my experience, neurologic oculomotor dysfunction from TBI (traumatic brain injury) — which has not been well evaluated in clinical trials — responds better to home-based treatment.”
Dr. Theis follows up with patients every 1-4 weeks to emphasize compliance and make treatment adjustments.
“Though the therapy is simple, it’s not without challenges. It’s a desensitization/provocation rehabilitation therapy — meaning, if smooth pursuits make someone dizzy, the rehab will make them dizzy until the eye movement improves, and the brain desensitizes to the symptom provocation. I’ve found that due to the intensity of symptoms provoked, this is best done at home in small doses, spread throughout the day, every day — rather than in one long session in the office — which can over-provoke the system and make people feel so debilitated they lie in bed for days.”
Still, Jacob initially struggled. The exercises lasted only 2-3 minutes each, but induced severe nausea and dizziness. So during our second visit, Dr. Theis reduced the exercise intensity, slowing the movements and shortening the duration. Jacob showed significant progress with each subsequent checkup, earning him a new set of exercises tailored to his current needs.
To boost compliance, I created a chart for Jacob to log his exercises, which required only 5-10 minutes daily. This, along with improvement in his symptoms, served as motivation.
I’m happy that Jacob’s symptoms have completely disappeared, and his vision has normalized. As I write this, he’s immersed in a book, rekindling his love for reading, and his grades are back to nearly straight As.
Oft-missed diagnoses
Why is oculomotor dysfunction frequently missed? For one, patients don’t always present with typical vision symptoms. According to Dr. Theis:
“It may be headaches on the computer, car sickness, inattention, or anxiety in visually crowded areas. So, the symptoms are not associated with the visual system by the patient or provider. Often, I have patients diagnosed with migraine, anxiety, ADHD, and cognitive impairment — and it’s not uncommon to have these conditions and an oculomotor problem — but sometimes it’s just an oculomotor problem.”
It’s a diagnosis often missed or labeled as something else. In addition, the appropriate eye exam is usually not performed.
“Diagnostic assessments for these conditions are not standardized. One of the findings I see in my clinic is symptom provocation with time — so the abnormality comes out after about 30-45 seconds of testing. Most clinicians only test eye movements for about 10 seconds, so they would miss a disorder that presents due to improper assessment.”
Why seeing a specialist is key
“My examination includes a comprehensive oculomotor testing battery that looks at each eye movement’s accuracy, speed, and stamina. Making a horizontal eye movement is a different neuropathological pathway than a vertical eye movement, so I have to assess different directions, movements, and head positions to diagnose what eye movements are abnormal and causing symptoms for the patient.”
Lack of awareness is another factor. Many don’t realize that optometrists can sub-specialize in things like neuro-optometry. Additionally, there are very few residencies, making sub-specialists hard to find — and “with lack of access comes lack of awareness,” Dr. Theis said — something common even among physicians.
The challenge of uncovering the correct diagnosis and treatment
“When lecturing students and clinicians, I always say: ‘If you have seen one brain injury, you have seen … one brain injury.’ The nuances of every individual case make neurologic disorders difficult to diagnose and treat. Sometimes you may try a treatment that doesn’t work for that patient, so you must pivot and try something else or refer to someone else.”
Dr. Theis said it’s hard to know the number of missed diagnoses. However: “Population studies suggest that up to 80-90 percent of acute TBI and 20-30 percent of chronic TBI have oculomotor dysfunction.”
This lack of recognition often leaves individuals feeling frustrated or discouraged. They grapple with symptoms that affect their academic performance, reading abilities, and daily lives, which may persist into old age. “It’s an ‘invisible’ condition — so patients may ‘look’ normal, have normal neuroimaging (CT/MRI), but have severe complaints/difficulties with tasks of daily living.”
Rest and symptom avoidance were standard treatments in the past, but Dr. Theis says we now know that active, targeted rehab is needed to expedite recovery. And the good news is, age isn’t a barrier. “The majority of patients in my clinic are adults. I find adults are slower to improve, but age isn’t a reason to not offer treatment.”
Looking ahead
Despite Dr. Theis’s and others’ success, even physicians aware of the condition remain skeptical that treatment works.
“The controversy lies in vision therapy as a whole. There are minimal evidence-based, particularly randomized, clinical trials in vision therapy, so many physicians say there is no evidence behind it. Therefore, it doesn’t work.”
Dr. Theis has hope
“New research has emerged in the past ten years in active rehabilitation for concussion and oculomotor dysfunction. Even so, there will always be physicians who say it’s a waste of money/time/won’t work because of what they were taught in med school.”
Dr. Theis envisions continued growth in her field and hopes to increase awareness among families, schools, workplaces, and other physicians.
Having witnessed my son’s journey — from severe symptoms and academic struggles to full recovery — I hope others facing oculomotor dysfunction can seek an accurate diagnosis and receive appropriate treatment.
The transformation it brings to a person’s life is truly amazing!
