After 16 months of navigating a maze of medical opinions and tests, I finally received a proper diagnosis for my symptoms: brain injury without loss of consciousness, mild traumatic brain injury, vision impairment, chronic midline posterior neck pain, vestibular dysfunction, sensory processing difficulty, and cognitive impairment. This validation from a sports medicine doctor not only confirms my experiences but also opens the door to targeted care, including physical therapy, neuro-optometry, and mental health counseling. In this post, I reflect on my long journey, the importance of advocacy, and the critical aspects of recovery.
After 16 long months of navigating a labyrinth of doctors, tests, and uncertainty, I finally received a proper diagnosis: brain injury without loss of consciousness, mild traumatic brain injury without loss of consciousness, vision impairment, chronic midline posterior neck pain, vestibular dysfunction, sensory processing difficulty, and cognitive impairment. It’s a moment I had hoped for but often doubted would ever come. Reflecting on this journey, I feel a whirlwind of emotions: relief, validation, and even a bit of frustration at the time lost.
For so long, my symptoms were met with skepticism. I felt like I was stuck in a medical purgatory—constantly advocating for myself while battling a barrage of dismissive remarks and misdiagnoses. Every doctor’s visit felt like another round of explaining my struggles, only to be met with the same vague responses. “It’s just a headache,” they’d say, or “You might just be stressed.” Meanwhile, I was grappling with extreme fatigue, debilitating head pain, and a cascade of cognitive difficulties that left me feeling lost.
The turning point came when I sought out the Amen Clinic and underwent SPECT imaging. Seeing the actual damage in my brain on the scan was both shocking and validating. The doctor’s words, “This is a brain injury,” resonated deeply. After months of feeling unheard, this link to my symptoms was a confirmation of my experience—proof that my pain was real and deserved attention. But, I still did not have my diagnosis, just a clue into what happened when I underwent TMS a mere 4 months before the SPECT imaging.
After receiving my SPECT images from the Amen Clinic, the prescribing doctor suggested a regimen of supplements aimed at supporting brain health. While this was a positive step, I quickly realized that my other symptoms—like vision difficulties, cognitive impairments, and chronic pain—were not adequately addressed. Frustrated, I sought out a Neuro-Optometrist who specialized in visual issues related to brain injuries. This was a game-changer, as their expertise helped me find relief from the persistent blurriness and light sensitivity that plagued me.
Around the same time, I connected with a physical therapist recommended by a friend. During our sessions, it became clear that I was exhibiting symptoms of Post-Concussive Syndrome (PCS), which had been largely overlooked until that point. My therapist meticulously addressed each of my symptoms, from balance issues to cognitive difficulties, but I could sense that I needed more specialized care. And my PT, too. My PT encouraged me to seek help from a sports medicine doctor, another Neuro-Optometerist, and a few other specialists.
After five long months, I finally got an appointment with a sports medicine doctor. This was a crucial moment; the sports medicine specialist unlocked additional pathways for my recovery, enabling a more comprehensive treatment plan that my physical therapist had been trying to manage on her own. The collaboration between these professionals finally began to address the myriad of challenges I faced after my brain injury.
What surprised me most was how a sports medicine doctor was the one to finally piece everything together. Neurologists, while experts in their field, often approach brain injuries with a different lens. Their focus tends to be on conditions like epilepsy or stroke, rather than the nuanced ways that sports-related injuries can manifest. Sports medicine doctors, however, are specifically trained to diagnose and treat injuries related to physical activity, which often include concussions and their subtle long-term effects. Their understanding of how the brain and body interact in active individuals allows them to recognize symptoms that might be overlooked by other specialists.
Receiving a diagnosis after so long isn’t just about finally having a label; it’s about the hope that comes with it. Knowing what I’m facing opens the door to targeted treatments and a clearer path to recovery. I now have a plan that includes craniosacral therapy, functional neurology, OT, PT, and vision therapy and a new approach to my daily life.
Through my research and conversations with the sports medicine doctor, I learned about the critical aspects of care for a brain injury. This includes working with a neuro-physical therapist to help connect and rewire brain processing, as well as speech therapy for cognitive difficulties and memory issues. Occupational therapy and Neuro-Optometry are also essential, particularly with the prism glasses and vision therapy I mentioned in another blog entry. Light therapy can further aid in recovery, especially for those of us grappling with sensory processing difficulties. Additionally, mental health counseling is vital to help calm the central nervous system, which can become stuck in a fight-or-flight state after an injury.
The sports medicine doctor was instrumental in helping me get the referrals I had been missing for these critical services. I am hopeful that these referrals will be processed soon, allowing me to get evaluated and start the comprehensive care I need to begin my healing journey.
Yet, I can’t help but feel a pang of frustration. What if I had received this diagnosis sooner? How much suffering could have been avoided? I’m sure many others are out there, struggling just as I did, waiting for their voices to be heard. This experience has reinforced my commitment to advocating for myself and for others who may feel lost in the system.
As I embark on this new chapter, I carry with me the lessons learned along the way. I’ve learned the importance of persistence and self-advocacy, and I’ve come to understand the profound impact of a supportive network. To everyone who’s shared their stories with me, thank you for reminding me that I’m not alone in this journey.
While the road ahead may still have its challenges, I finally feel like I’m on the right path. If you’re in the midst of a similar struggle, hold onto hope. Keep advocating for yourself. A proper diagnosis may be closer than you think, and with it, the possibility of healing.
Thank you for being part of this journey with me.
All my light. All my love.
Namaste.
Jordan
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