Dystonia: Life around the Bend
As my recovery progressed, new questions emerged. Despite some improvements, many symptoms remained. My neck and jaw was still twisted, stiff, and painful. My muscles remained weak and rigid, particularly on my right side. And fatigue continued to plague nearly every moment of daily life.
Over the following months, I searched for more answers. Various specialists, including TMJ, confirmed that my neck had become severely restricted, but no one could explain why. One oral surgery practice vaguely determined that my issue was muscular not structural, but had no further advice as to why I could not "hold the position” in relation to my reproducible bite. It was well over a year before an Upper Cervical chiropractor identified rotated C1-C2 vertebra—findings that had not been reported on the original imaging report.
As I was shuffled off to a variety of specialists, there was increasing suspicion of a neurological problem, but testing provided few answers. Electromyography (EMG) and nerve conduction studies (NCS) were largely normal except for peroneal sensory neuropathy. Because of my abnormal head position and neck symptoms seemingly related to the rotated vertebrae, I began researching cervical dystonia (torticollis), a movement disorder characterized by involuntary muscle contractions.
Based on my own inquiry, I was then referred to a movement disorder specialist. However, the specialist was unconvinced that cervical dystonia explained my condition. He noted significant weakness on my right side, particularly around my shoulder. Dystonia is associated with excessive muscle contraction rather than weakness. He was therefore concerned that the standard treatment—botox injections—might worsen my symptoms.
Over time, I developed additional confusing symptoms including palpitations, abnormal sweating/hives, and other signs I later learned were related to small fiber neuropathy (SFN) which isnt detected by NCS designed to test large nerve fibers. Eventually, after further evaluation with a specialist, I was diagnosed with Autonomic Dysfunction. While that explained some symptoms, it still did not account for the abnormal muscle tone and weakness affecting my body.
As I slowly regained strength, I returned to physical therapy. That is when I noticed the asymmetry between my left and right side increasing: my left side was improving much faster than my right. My left leg felt stronger and even appeared longer. I also noticed what felt like increasing curvature in my back to one side. Seeking more answers, I underwent comprehensive spinal imaging through another chiropractor specializing in Chiropractic Biophysics. The findings included lumbar scoliosis, pelvic tilt, and a leg-length discrepancy.
Further orthopedic evaluation determined that the leg-length difference was functional rather than structural. In other words, the bones themselves were normal. The asymmetry appeared to be caused by abnormal muscle tone and that began to finally solve the mystery.
After once again returning to the neurologist, he initially suggested that both structure and tone (controlled by the brain) were likely responsible. However, an orthopedic surgeon quickly ruled out the "structural" (skeletal) component as being the causative factor. The final remaining question then was what neurological condition was causing the abnormal tone. After years of consultations and several neurologists, I was finally diagnosed with Hemidystonia.
Dystonia is essentially dysfunctional tone caused by a rather complex disorder of sensorimotor integration versus solely hypercontraction of isolated muscles. It's largely the result of impaired sensory processing, and failure to properly filter incoming “noise.” One physiotherapist described it to me almost as motor disassociation where the brain can erroneously perceive a twisted position as correct. It can be primary which in turn can be genetic or “idiopathic,” secondary which is acquired or part of another injury, or even functional typically triggered by emotional stress. Frustratingly, it's not unusual for the diagnosis to be delayed partly because there are a wide variety of both causes and presentations. One positive prognostic indicator for recovery is the existence of a sensory trick or “geste antagoniste” (temporary correction of the hypercontraction when touching a part of your body such as your chin) which I later found was the case for me.
Sometimes one of the most difficult parts of a medical journey is living for years without a name for what you are experiencing. At last, there was an explanation for the asymmetry, and postural changes that had affected my body for so long. The diagnosis alone did not answer every question about how the condition began or why recovery unfolded the way it did. But after years of uncertainty, it finally provided a framework for understanding what had happened.
My diagnosis marked the end of one search and the beginning of another: finding additional connections, understanding how it all fits together, and what additional recovery still lies ahead.
