Overlooked Vision Problems after a Traumatic Brain Injury

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On a very windy, fall New England day, the engine of the truck I was driving overheated. I pulled off into the breakdown lane of the very busy interstate highway I was traveling so I could see what was happening under the hood. As vehicles sped by well over the speed limit, I opened the heavy, metal hood and propped it up with the metal rod that was designed to hold it up. I then leaned over the front of the truck and saw a coolant hose had become disconnected. That was an easy fix for me because I had a screwdriver I could use to tighten the clamp after I reconnected the hose.

In a split second, a very strong gust of wind blew the hood back to the windshield. The metal rod that had once propped it up fell and hit me on the nose. The wind then quickly reversed direction and slammed the heavy steel hood down onto the top, front, right side of my head. The hard blow, which I would equate to a Professional Wrestler jumping off the top rope to slam his opponent on the head with an 80-pound solid steel chair, knocked me out. I fell backward from a standing position and hit the back of my head on the hard pavement behind me.

It ended up being the worst brain injury I’d ever had. An emergency department doctor told me I had a concussion and that I would be good to go back to work in a few days. Having racked up many concussions playing youth sports, I knew he was wrong and that this brain injury was different from all the rest.

A month later at Thanksgiving family gathering, a young nephew of mine stopped me in the kitchen while I was sneaking bites of food before dinner. He said laughingly, “Hey, Uncle Ted!”

I looked at him with food in my hands and in my mouth. For sure I was busted! He then stretched out an arm, pointed a finger at my face, and asked in amazement, “How is that eye (my right eye) looking straight at me and that eye (my left eye) looking at the clock on the wall over there?”

Like in a dream, a crowd of people suddenly appeared behind him. They were looking, squinting, peering and pointing at my face trying to see what my nephew had noticed. As soon as they saw the discrepancy with my eyes, they began laughing at me like I was a sideshow exhibit.

I stood there like a deer in headlights, still suffering from post-concussion symptoms and thought to myself, “This is not good!”

The dream I thought I was in was now turning into a nightmare!

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A few days later I had an appointment with a local Ophthalmologist. He did a quick eye exam and told me I had third and fourth Cranial Nerve Palsy (damage to nerves that control eye muscle movements.) My left eye was turned outward and upward. He advised me, “This sometimes corrects itself and may take up to a year to do so.”

I didn’t really have a lot of visual symptoms and the eye doctor said my brain was, “compensating for the misalignment.”

So when I walked out of his office without any solutions on how to improve my vision such as special lenses or vision therapy, I hoped for the best that my brain would fix itself. And over the next 12 months, my nightmare turned into a full-blown horror movie!

Everything in my life that was once enjoyable to me became extremely stressful for me. I became easily over-stimulated (flooded) because my brain’s filters no longer worked properly. It made me become overwhelmed by what I saw, heard, touched, smelled, etc. This persistent, nerve-rattling anxiety prevented me from shopping in a grocery store, sitting in a movie theater, walking around a mall, attending my children’s school functions and sporting events, working as an electro-mechanical assembler and driving my car.

Every once in a while if I pushed too hard or ignored my brain’s warning signs, I would go into Fight or Flight Mode. No amount of medication, yoga, meditation or deep breathing could make it stop!

At work, detailed electronic schematics and mechanical drawings became too overwhelming to look at. Words jumped all over the page when I tried to read technical manuals. I couldn’t see in 3D anymore and became stuck in a 2D world. I couldn’t imagine and turn images in my brain like I once was able to do and it killed my creativity. My hand-eye coordination was completely off. I dropped expensive parts on the floor because I misjudged where the table I was placing them on was located. I walked into stationary objects because my vision dragged as I turned my head or walked around. All of this led to me making a lot of mistakes and falling behind on production.

Even though I was trying hard to hide “my problem” from everyone, I soon learned it was being easily noticed by my co-workers, managers, and boss. My co-workers asked me, “Why are you milking the jobs when we have plenty of work to do?
My managers asked me, “When are you going to be finished? You’re delaying the next job!”

I walked from my workstation to get something at the other end of the shop. As I stood there confused as to what I was down there for, the owner of the company (who had been secretly watching me) stepped out from behind a cabinet and asked, “Ted, why are you down here?”

My eyes filled up with tears as I stood there horrified not knowing what I was looking for. I somberly replied, “I don’t know.”

He said to me with a very concerned look on his face and tone of voice, “You’d better go get some help for that!”

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I went back to my eye doctor to tell him all of my symptoms. He gave me another examination and told me to find a Child Strabismus Eye Surgeon who was willing to do surgery on my left eye muscles. It took me a full year for me to get an appointment with several eye surgeons and then have the surgery. During that time I was on short-term disability.

Shortly after the surgery, I was back at the surgeon’s office mad as could be because nothing had changed for me visually and none of my symptoms had changed. I was still stuck in the horror movie that had turned my life upside down! My symptoms were so bad that I begged him to “put horse blinders on the sides of my eyeglass frames” because my brain couldn’t handle using any peripheral vision! He said there wasn’t anything else he could do for me and I left his office pissed off and defeated.

Over the next four years, I went from working in engineering and building products, multitasking on several projects, and running a crew of workers to being a basic wiring harness assembler. I’d left 13 jobs in a fit of fight or flight rage not knowing what was going on with me. I also had to give up my Commercial Drivers License (CDL-A) and my hobby as a Crew Chief for a drag racing team.

Gone, were the days of being creative and spontaneous!

Gone were my multi-tasking and high functioning organizational skills!

Gone were my incredible hand-eye coordination and visual spatial awareness!

Gone was my never-ending supply of energy which enabled me to work an average of 50 plus hours per week, raise a family at home, and participate in hobbies I loved to do!

Gone were my family, friends, and co-workers who used to fill my day with fun and laughter!

Gone was the “old me”, but I was going to fight to get any remnants of him back!

When my daughter, Samantha, was about seven years old, I found her sitting on the living room floor flipping through old photo albums. What really caught her attention were pictures of the “old me” doing fun activities with her older brother. She grew up only knowing me as having a brain injury as her older brother knew me before and after the injury. Her normal was having an anxiety-filled, recluse for a father. I could see her anger building as she turned each page. She looked up at me and angrily asked, “When are WE going to do these things?”

Oh, the hits just kept on coming!

I told her I was doing everything I could to get back to doing those things and as soon as I figured out what was going on with my vision we would do all of those things and more.

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I saw two more providers who diagnosed me with Post Trauma Vision Syndrome and provided me with prism lenses. For some reason, the lenses alone did not work for me. They were very overwhelming to my vision system and the Brock String exercises weren’t making a difference either.

In the meantime, I persevered onward by helping Veterans and athletes with Traumatic Brain Injuries and, their family members. They would always tell me, “You’re the only one who has given us information about TBI and how to get help for it!”

The code I couldn’t crack was the one that could get my brain to process vision correctly again. Eventually, my visual processing speed slowed down to where I couldn’t even help Veterans and their family members anymore. Like a candle that had flickered in the wind trying to stay lit for far too long, it finally blew out and I felt like I had lost everything good in my life.

I wished the hit to my head had killed me!

As I focused on rehabilitation for my brain injury, my vision problems made it difficult for me to do speech therapy, occupational therapy, and vestibular therapy. During another failed session of speech therapy, my speech therapist yelled at me, “I’m making up cues and you’re not even seeing them!”

I was so upset that I went to my Neurologist and demanded, “Give me a referral to anyone who knows anything about the vision problems I’m having!”

Finally, after 12 horrible years, I got the right referral to the right Optometrist who gave me the right neuro-optometric evaluation, prescription lenses with prisms, and a vision therapy treatment plan.

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I’ll never forget my first appointment with Dr. Kevin M. Chauvette, O.D., C.O.V.D., at MVC Eye Care in Manchester, New Hampshire. I was given a Visual Evoked Potential test, which consisted of me sitting in a chair with a funky set of glasses on while looking at a screen which had a red cross-hair in front of black and white blocks. I was then taken into the exam room where an intern had the results of my VEP test displayed on a laptop computer.

Dr. Chauvette came into the room and kindly introduced himself to me. He then noticed the graph on the laptop and quickly directed his intern to look at it. He excitedly yelled out to his intern, “There! Right there! You only see THAT with a person who’s had a Traumatic Brain Injury!”

At that very moment, I knew I was in good hands and any anxiety I had about the evaluation dissipated. He explained to me that my vision processing was delayed (something that couldn’t be detected with a regular vision exam.)

After an extensive examination, I was diagnosed with Post Trauma Vision Syndrome and visual/vestibular processing imbalance. I was prescribed glasses with prisms and referred to Eye Q Vision Therapy Center for vision therapy.

I asked Dr. Chauvette to provide me with an explanation of the vision problems people can have following a Traumatic Brain Injury. He explained,

“The symptoms and experiences that Ted describes so vividly, although slightly different in every brain-injured patient, all have a common thread and, a common cause. The vestibular system, which is comprised of a fluid based feedback mechanism located within the inner ear, gives the brain information about acceleration, orientation and the body’s location in space. This system needs to coincide with the same type of information being sent to the brain by the visual system as well as through experiences via the proprioceptive or touch system.

When there is conflict between what the vestibular, visual and/or proprioceptive systems are sending to the brain, that conflict creates uncertainty, perceived movement of the world and internal nausea or wooziness. Therapy involving only one of these systems by itself does not seem to be as effective as intervention that utilizes vestibular, visual and proprioceptive therapy together to recreate the synchrony that we all take for granted.

First, patients may show little or no measurable damage on tests like MRI or CT, but still may still suffer greatly, is a necessary starting point for providers in guiding the proper treatment.

Furthermore, understanding that we are built with a bi-modal visual system, is critical. In asymptomatic individuals, the central or focal visual system is balanced and in sync with the ambient or peripheral visual system. Individuals can attend to both central information and peripheral information simultaneously without excessive effort or compromise.

Patients with Post Trauma Visual Syndrome often can only attend to one of these systems at a time and unconsciously block the opposing system in order to achieve what once came very naturally.

They may sacrifice peripheral vision in order to focus on some detail in their central field, causing them to lose the ability to navigate in a straight path or bump into something unknowingly. Movement in the periphery when attending to a central target, such as sunlight through the trees when driving down the road, can overwhelm the system and cause extreme fatigue, dizziness, and nausea. Conversely, they may sacrifice central vision and miss important details when something in their peripheral vision requires their attention.

Understanding how these systems operate and the potential effect that often result from trauma is critical in guiding the systems back toward their normal state.”

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While I was waiting for my new pair of glasses with prism lenses to come in, I began vision therapy. It consisted of a combination of Syntonics (Optometric Phototherapy), Dynavision D2, and Computer-Aided Vision Therapy. As soon as I got my new glasses, I walked around the mall with my family members to see if I would have to run out of the place like I had to so many times before. I stopped on the upstairs of the mall and looked around. I then turned around and asked my daughter to take a picture of me with a smile on my face because the prisms were working.

I believe starting vision therapy and then getting my prism lenses made all the difference in getting my brain’s vision processing systems functioning together again. After every vision therapy session, I noticed a positive change in my visual processing. I was amazed that I didn’t have any bad side effects from the therapy. In fact, the therapy was easy. Almost too easy!

After my 24th vision therapy session, I walked out into the lobby and just starred at the Eye Q Vision Therapy sign in awe! The Vision Therapist saw the look on my face and asked me, “What’s wrong?”

I pointed at the sign and excitedly yelled, “The sign! The letters are raised!”

She laughed and exclaimed, “That sign has always been that way since you started vision therapy!”

As I drove home I noticed the letters and numbers on license plates were raised. Then I noticed all of the business signs were raised as well. I pulled into a shopping plaza and just stared at the signs to let my brain soak up all of the beautiful detail. I wept tears of joy and sadness. I was joyful because it had been a long time since I could process visual information this way, but sad I had to struggle for so long and lose so much to get to this point in my rehabilitation.

12 years of avoidance!

12 years of suffering alone!

12 years of constant failure!

12 years of anxiety, fight or flight rage and overstimulation!

12 years of not being there for my family when they needed me!

12 years of not being able to do the things I once loved doing!

It took a total of 40 vision therapy sessions before I attempted to drive on the interstate highway again. It wasn’t easy driving 55mph in the slow lane because it was very visually nerve-racking for me. I would alternate driving to destinations via slow local roads when my anxiety was high and then on the highway when I felt well and rested.

Having an awesome place to drive to three days per week (the Krempels Center) made me push myself to get back out on the highway. No longer would I have to drive an hour to my destination on slow, local roads. No longer would I have to feel awful when those roads took me over Route 95 (my nemesis!) I was going to take the highway and be there in less than 45 minutes!

As my driving speeds increased and found it hard to relax, I realized that I had been stuck in focal vision/fight or flight mode for so long that it had negatively impacted my breathing. To help break that cycle of taking quick, shallow breaths from my upper lungs, I attended meditation and yoga classes at the Krempels Center. With help from experts, I retrained myself to once again relax, be mindful and take slow, deep breathes via my diaphragm.

Every day I felt more comfortable with driving on the highway. As tractor-trailer trucks drove by me, I thought back to when I used to drive them. How we were trained to look one-quarter mile ahead of us while at the same time use our peripheral vision to check our side mirrors for vehicles traveling on both sides of the truck. I remembered how relaxing it was to have a balance between focal and peripheral vision and I practiced those skills as I drove my little car down the highway.

Also, I had a much-unexpected surprise from the vision therapy! I noticed that I could once again tolerate listening to the radio while driving. Before vision therapy, listening to the radio while driving was overwhelming and impossible because I had an auditory processing disorder as a result of my Traumatic Brain Injury (the same brain injury that caused my vision problems.) I contacted my audiologist at the Manchester VA Medical Center and requested that he retest me to verify if what I had noticed was true. He agreed to retest me and the test results verified my auditory processing disorder was GONE!

I learned that my vision and auditory processing problems were located exactly where I was hit in my right temporal lobe. Unfortunately, it didn’t take away all of my vision problems. Issues remain such as depth perception and tracking, long-lasting brain injury deficits with executive function, working memory, attention, neuro-fatigue, talking too much, left side weakness and pain, etc., all associated with my damaged right frontal, temporal and parietal lobes.

No longer do I have to leave my family members stranded as I ran out of a grocery store, mall or school in a full panic attack; they don’t have to make excuses for why I’m not at events because I now can attend all of them, and they don’t have to hold onto me to keep me steady on my feet anymore when I stand for the National Anthem.

I’ve been able to drive to and attend my daughter’s dance recitals and sporting events at school, my son’s college graduation at Gillette Stadium, a Boston Bruins game at TD Garden, and drag racing at New England Dragway. I’ve yet to attend a NASCAR race at New Hampshire International Speedway since getting my vision processing back on track, but it’s on my list of things to do. I miss taking my family to the races.

I greatly appreciate Dale Earnhardt Jr. (retired NASCAR driver) for openly sharing his brain injury rehabilitation journey in the media and on his podcasts. I’ll never forget watching a video he posted of him being in a grocery store wearing large glasses while explaining to his followers that his doctors wanted him to do daily activities as part of his rehabilitation. He also explained that his fiancée (now wife) was doing all of the shopping just like my wife had to do. I want to let Dale Jr. know that what he did to raise awareness about his brain injury meant a lot to me and helped me on my road to recovery!

Similarly, I want to thank Chris Rolfe (former Major League Soccer player), for his openly candid, eye-opening interview in the article: Lost in a supermarket: A soccer player’s daily struggles after concussion.

Traumatic Brain Injury can make you feel scared, alone and overwhelmed by things that we normally do every day and take for granted. It doesn’t matter if you’re a superstar athlete, Veteran or an average Joe like me, the effects can be life changing, career-ending and ruin the best of relationships.

I can’t stress enough the importance of getting a proper neuro-optometric evaluation for vision problems after a Traumatic Brain Injury (TBI) and then getting the right lenses and vision therapy (if needed.) You owe it to yourself and your family to pursue this so that you’re no longer sitting at home alone on a couch while your family members are out enjoying life. No longer do you have to be far away and left behind!

What I learned throughout this experience is there aren’t a lot of medical providers who understand this common problem that is secondary to a TBI. Its disturbing to me how easily they choose to write off a TBI survivor like me. People give up when they see a provider who doesn’t have a clue about Post Trauma Vision Syndrome.

TBI survivors don’t understand how the brain’s vision processing systems work and therefore they don’t know how to explain what is happening to them. When they get their vision checked and it’s 20/20 (with or without glasses,) everyone thinks their vision is fine. They don’t understand that even with 20/20 vision they can still have functional vision problems. Also, we are taught through television, movies and other media that if something doesn’t show up on an MRI or CT Scan, then there must not be anything wrong with us.

I can’t count the number of times I wish I had the piece of metal sticking out of my head or my left eye still going outward and upward like a sideshow exhibit. Family members, friends, co-workers, teammates and others don’t understand what you are going through because it’s an invisible injury. When it affects you behaviorally, people think you are being over-dramatic, faking or looking for attention.

The number of those people I’ve met at brain injury support groups, conferences, rehabilitation programs, hospitals and online with undiagnosed vision problems from a TBI is staggering! They’ve given up all hope and resigned themselves to a lonely, anxiety-filled, over-stimulated life of living hell!

Although I’ll probably never get behind the wheel of a race car or tractor-trailer truck again, I’m okay with that. I’m glad I never gave up, met incredibly smart people who understand my medical condition, and I got to regain some of my independence I’d lost so long ago. The days of sitting home alone on a couch and not being there for my family are far away and left behind!

Nowadays, if I’m sitting on the couch, I’ve got my headphones on listening to music, thinking about my brain injury journey, and typing it all out on my laptop computer. My mission is to advocate for Traumatic Brain Injury survivors, their family members, and caregivers by giving them a voice as many of them can’t explain what they are experiencing.

It’s been four years now since I first met Dr. Chauvette and I’m happy to report that I’ve driven highways into the White Mountains of New Hampshire, the Green Mountains of Vermont, up the coast of Maine, and into the city of Boston, Massachusetts while happily listening to and singing the song, “Don’t Look Back” by the band Boston.

I, finally see the dawn arrivin’!

I, see beyond the road I’m drivin’!

Far away and left behind!

FIND A PROVIDER NEAR YOU

An interdisciplinary, integrated team approach can play a vital role in the rehabilitation of patients with various types of neurological deficits. The NORA “Find a Provider” locater is a listing of NORA members and is not representative of the number of rehabilitation team members throughout the nation or in any geographic area.

Dr. Kevin M. Chauvette O.D., F.C.O.V.D. performed his undergraduate training at the University of New Hampshire (UNH) and St. Anselm College, Manchester, NH and graduated from New England College of Optometry in Boston, Massachusetts with a doctor of optometry degree in 1989. He is a Fellow in the College of Optometry in Vision Development (COVD), the Neuro-Optometric Rehabilitation Association (NORA), The American Optometric Association (AOA) and the NH Optometric Association (NHOA). He is an adjunct faculty member of the New England College of Optometry in Boston, the Illinois College of Optometry in Chicago, SALUS College of Optometry in Elkins Park, PA, and Western College of Optometry in Pomona, CA . www.merrimackvision.com
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