Navigating the Road to Recovery: My Journey with Complex PTSD, Jaw Misalignment and Visual Midline…

As I embark on sharing my personal journey, I do so with the hope that my story will illuminate pathways for others navigating the labyrinth of their own complex medical circumstances. With each word penned, my aim is to offer not just a narrative, but a beacon of understanding and solidarity to those facing similar challenges. Together, may we unravel the threads of uncertainty and discover the resilience within ourselves to navigate the intricacies of our unique medical landscapes.

In the tapestry of life, December 23, 2016, stands out as a day painted with the hues of holiday joy and familial warmth. The air was filled with festive cheer as I set out to pick up my petite mother for a cherished holiday gathering. With careful attention, I adjusted the passenger seat to accommodate her diminutive frame, ensuring her safety before we embarked on our journey. As we traversed the familiar roads, Christmas melodies filled the car, accompanied by shared memories that wove us together in a tapestry of love and nostalgia.

But fate, it seems, had other plans. Approaching the bustling interstate, the rhythm of our journey was abruptly shattered by the screeching halt of traffic. In an instant, chaos unfolded as an SUV collided with our car at a staggering speed, thrusting us into a whirlwind of fear and uncertainty. Instinctively, I shielded my mother, bracing for the impact that would forever alter the course of our lives.

Amidst the chaos and confusion that followed, my concerns shifted from my own well-being to that of my mother and the precious cargo nestled in the trunk — my work laptop. As ambulances arrived on the scene, my mind raced with worry, adamant that we both be taken to Maine Medical Center, unwilling to let my frail mother navigate the ordeal alone.

In the aftermath of the accident, physical injuries healed, but the scars that lingered were invisible to the eye. The mere sight of a car looming too close in the rearview mirror became a trigger, igniting a symphony of fear and panic that echoed long after the wreckage was cleared. Little did I know, this was just the beginning of a journey marked by unforeseen twists and turns.

Returning to the rhythm of everyday life, I found myself grappling with newfound challenges — walking as if intoxicated, struggling to articulate thoughts, and grappling with a sense of disorientation that permeated my reality. It was a journey fraught with uncertainty, leading me down a path of medical evaluations and diagnoses that unearthed a complexity I had never fathomed.

My physical injuries were minor, with “only a concussion” and some facial swelling. I took a few weeks off from work to rest and recover. As the pain and swelling on the right side of my face persisted, I went to see my dentist who diagnosed temporomandibular joint (TMJ) disorder. I was placed on a mechanical soft diet for several months and not allowed to eat anything larger than a pea. The touch of an expert physical therapist made the pain much more tolerable. It’s still misaligned but much less so.

Enter Visual Midline Shift Syndrome (VMSS), a diagnosis shrouded in mystery and misunderstanding. As I grappled with its implications, the world around me seemed to shift, distorted by a perception that defied logic. VMSS involves your brain miscommunicating with your eyes; just like the note on your car mirror that says, “objects are closer than they appear.” For me, they are to the right and forward as I have a lateral and anterior shift. Yet, through vision therapy and unwavering determination, I began to reclaim balance and clarity, one step at a time. I didn’t see anything differently, which baffled me. I seriously wondered if my neuroopthalmologist was a “quack.”

Since you couldn’t put prisms into progressive lenses, I needed 2 pairs of glasses, one for near and the other for distance. I was constantly switching between the pairs. At work, I would use one pair for looking at my laptop and the other to look at other people in the room throughout the meetings. It wasn’t unusual for me to flip back and forth 10 or more times an hour. My glasses were also tinted yellow because of my light sensitivity. People, without ill intention, constantly asked me about my glasses. It quickly became annoying, and I felt like I stood out from the crowd because of them — and I still didn’t see anything different.

A year after the accident, I moved to the Midwest for a new job. The questions and comments about my glasses started all over again as I interacted with new people. About eighteen months later, I transitioned from the prismed glasses to regular bifocals. Still, everything continued to look the same to me.

My sense of spatial awareness changed after the accident, leaving me feeling disoriented and disconnected from reality at times. I no longer enjoyed going to concerts or events with large crowds. I started to stay home more, preferring to be in a calm, familiar setting. Even in the familiar setting of my home, I fell a few times sustaining a minor back injury and a torn meniscus in my right knee; I dismissed it as being clumsy.

By 2020, the pandemic arrived. In that same timeframe, we lost my mother-in-law, mother and one of our pets — all within six months. My persistent insomnia and anxiety were attributed to these unfortunate circumstances. I started experiencing memory problems and stumbling on my words, naming things wrong (mixing up the airport and post office happened regularly). I began to have difficulty retaining new information. I could binge a great audiobook and yet two days later, I couldn’t tell you any details about the story.

In October 2022, I was diagnosed with Complex PTSD which was extremely hard to hear. I’d previously been diagnosed with Bipolar Disease (a misdiagnosis) and anxiety. Getting an accurate diagnosis had a substantial impact on my life. Much of my trauma occurred when I was quite young, so behaviors and reactions tied to those events are deeply engrained in my brain and body. I’m now getting proper treatment and healing old wounds.

Flash forward to May 2023, I drove for three solid days (not concurrent) to visit family for Mother’s Day and attend a Taylor Swift concert with my daughter. When I departed to go home, I started feeling a sharp pain just below my right elbow. I assumed it was from driving so much and blew it off. When the pain didn’t resolve after several months, I went to see a physical therapist. Initially, I was baffled at his focus on my neck and jaw. The pain was in my elbow. I was diagnosed with cervical instability. Because of my posture, the ligaments in my neck had become floppy. When my head moves around like a bobblehead, the nerves that go down to my arm are impacted. In the midst of all of this, my TMJ persisted. I clench my jaw so often that my teeth are loose. I wear a mouthguard at night to minimize the impact. I’d assumed the clenching was related to my Complex PTSD but, upon examination, my jaw is still misaligned six years later. Daily physical therapy exercises for my jaw, neck and arm are now part of my routine.

My neurologist told me that the vibration of being in a car for extended periods of time contributed to the problem. Now I have to wear a soft collar if I’m in a vehicle for more than 30 minutes. If I’m a passenger, it’s not so hard but driving is a different story. While it’s not illegal in most states to wear a soft collar while driving, it’s not so easy to move your head to check out the traffic so I avoid driving more than 30 minutes without getting out of the car for at least 20 minutes. Since I live in the country, every place I go to is a 30+ minute drive. I have to carefully plan my appointments and errands to be compliant with his advice.

Recently, I started to question my diagnosis of VMSS (again). My optometrist reminded me that everyone with this condition questions whether they have it. We see what we see, and we trust our vision. Yet with VMSS, you can’t trust that what you see is where you see it. He said that, as long as I wasn’t falling down, he thought I was okay without my prisms but said, if I needed them, I could start wearing them again. I decided to hold off. I dreaded returning to carrying around a bag of glasses.

Around that same time, I started to wonder how all of my medical conditions relate to each other. Some have remarkably similar symptoms and it’s hard to tease out what causes what. I also couldn’t ignore that I was falling and bumping into things more often. So, I did what anyone else would do, I went internet searching for the odd combination of diagnoses that I have to see how they may relate to each other in one whole person. That term, whole person, is important because my healthcare providers, like many others, care for a condition or two but rarely refer to me as a whole person. No fault of theirs, it’s a product of medical training. It’s impossible to know it all so physicians are either very specialized or very general. I’m complex so who is my best advocate? If I can’t even trust what I see, how can I be my own advocate?

The hospital that provided my healthcare was recently sold at auction, so I have to get new providers with the exception of my primary care physician. I find myself starting over, telling my story (again) in hopes that someone will understand it all and be my advocate. Through my research, I now understand that some of the things I’ve experienced in recent years may actually be attributable to VMSS more than Complex PTSD. Here is what I learned with some examples of what I’ve experienced:

• VMSS causes disruption of perception of spatial orientation, leading to balance issues and difficulties with coordination. Body posture is shifted in an unconscious attempt to achieve balance. This can result in a higher risk of falls and accidents, impacting mobility and activities of daily living. e.g., My tilted posture for the past six years is a result of my VMSS, contributing to, perhaps causing cervical instability.
• VMSS impacts cognitive functioning, including attention, concentration, and problem-solving abilities. Distortions in spatial perception may interfere with tasks that require spatial awareness, such as reading maps, following directions, or understanding spatial relationships between objects. e.g., I avoid driving if someone else is available to do it, especially if visibility or road conditions are compromised. I fear misjudging where other vehicles are relative to my car. While I haven’t had another car accident, I used to be a confident driver and typically insisted that I drive rather than be a passenger.
• Living with VMSS can be emotionally challenging, leading to feelings of frustration, anxiety, or depression. The constant struggle to navigate the world with distorted spatial perception can erode self-confidence and impact overall quality of life. e.g., At a trauma workshop, an activity was tied to spatial awareness. I enjoyed the first part of the exercise from the comfort of a chair. When the facilitator asked everyone to stand and walk around with their arms extended, I had to leave the room. 600 people aimlessly roaming the room with their arms extended overwhelmed me.
• Comfort with social interaction and communication skills are affected by VMSS. Individuals may feel self-conscious or embarrassed about their difficulties with spatial perception, leading to social withdrawal or avoidance of certain activities or environments. e.g., I used to attend concerts, minimally a dozen a year. Since my accident, I’ve attended only a few. I feel safest attending with someone who understands my injury and is comfortable holding my hand to guide me. Moving in the same direction as a crowd is a bit easier than when movement is chaotic. Navigating to find your seat is difficult, especially if I need to traverse steep stairs in a crowd to get to it. Once there, I don’t leave my seat until I’m leaving the venue.
• The impact of VMSS on balance and coordination can increase the risk of accidents and injuries, potentially leading to physical health problems. e.g., I’ve fallen three times in less than four weeks, diabetic neuropathy in my feet doesn’t help. Since the accident, I’ve depended on my feet to feel stairs rather than step where I see the stairs. That isn’t working so well for me now.
• VMSS can impact occupational performance and productivity, particularly in tasks that require precise spatial judgment or fine motor skills. Jobs that involve driving, operating machinery, or working in environments with spatially complex layouts may be particularly challenging. e.g., I previously traveled frequently for work. Today, airports are a challenge for me that’s beyond what the average person’s frustration. I still fly but only when necessary (long distance driving is not an option now). Air travel is something I plan with much precision. I can’t run between gates to quickly catch a connecting flight, but I no longer cringe at a 3+ hour layover. I find myself grateful that I have time to get where I need to go even if I have to stop for a bit to wait for a break in the crowd.

VMSS can significantly affect quality of life. The combination of vision changes and associated physical, cognitive, and emotional challenges can make daily activities more difficult and limit participation in various aspects of life. I’m not sure that it’s possible to pinpoint which condition causes each challenge that I regularly face. I now understand that VMSS has impacted my life in ways that I previously thought were purely psychiatric in origin. Teasing out the impacts of my multiple medical conditions may be impossible as there are so many ways that they intertwine.

My journey is far from over. Each diagnosis adds a layer of complexity to the tapestry of my medical narrative. Yet, amidst the challenges, there emerges a newfound resilience — a steadfast belief in the power of healing and renewal. As I stand at the crossroads of past and present, I am reminded of the interconnectedness of my journey — a journey marked by courage, perseverance, and the unwavering belief that, even in the face of adversity, there exists a pathway to healing. And so, with hope in my heart and a steadfast determination to navigate the twists and turns that lie ahead, I embrace the journey that lies before me, knowing that I am not alone in this labyrinth of life.