12. What Began as a Concussion Turned into so Much More... and it Didn't Have to

Panic.  The return of the pain in my arms and the recent addition of uncontrollable twitching brought panic.  I called Dr. T’s office and emailed him in a frenzy of desperation.  His staff deflected all blame away from the prolotherapy treatment and the only advice they could offer to remediate my symptoms was more injections.  Here is Dr. T’s crushing email response:

Please schedule an appointment to come in to discuss.  As I mentioned during our initial visit, you will need multiple treatments.  You cannot pass judgment on your progress based only on the initial treatment.

Incidentally, several of my staff has informed me that you have been quite rude to them on the phone.  Treating rudely the very people who only want to help you is not exactly a winning strategy.

If they interpreted my overwhelming panic and fear as rudeness, I’m okay with that.  Either way, his email, of course, shattered any long-standing hope that he could help me. So I went back to family chiropractor with the hope that a few more sessions with him might take away all the pain as it had before. 

Unfortunately, it didn’t.  Instead my body began to spiral out of control, and all I could do was brace myself for the ride.  The symptoms that came next I truly wouldn’t have believed were possible unless I experienced them firsthand. 

Swelling and Sweating

Intense swelling and inflammation occurred alongside the pain that began in my arms.  It was most prominent in my shoulders but spread to my neck, chest and upper back.  At it’s worst, it even expanded into my face.  I felt puffiness behind my eyes and underneath my chin, and the swelling in my cheeks made me look like a chipmunk.  I also began to have abnormal body sweats and hot flashes; it was as if my body was no longer able to easily regulate temperature.  

Twitching and Spasms

Next came uncontrollable twitching.  The unpredictable bodily movements started in my arms and neck but soon spread to every other area of my body.  My jaw would slam shut mid-sentence and my tongue started propelling outside of my mouth, causing me to slur my words.  My feet and legs ticked this way and that.  I even had forceful bodily jerks in my core, leading my chest to violently thrust forward out of nowhere. 

Alongside this I had muscle spams – little blips and contractions of muscle all over my body, as frequent as they were erratic.

Sensitivity Dysfunction

Then came the sensitivity dysfunction.  One day I woke up and the entire left side of my body simply felt numb.  Scratching my left thigh produced a dull sensory response; I could dig into my leg with sharp fingernails and it wouldn’t even hurt.  

My hands started acting weird, too. My fingers curling inward as if my nerves were being strained so heavily that they couldn't remain open. I struggled to hold a pencil, or to pick up a glass filled with water. 

Unable to keep both legs properly working in unison with one another, the lack of sensation caused me to limp.   I would later begin to feel intense pain and sensory dysfunction in both of my feet as well; if I walked outside during a warm summer day without wearing shoes, they would flare up for hours as if I had dipped them in boiling water. 

It wasn’t just my extremities either. The left side of my face began showing signs of Bell’s palsy. One side of the face drooped and if I attempted to smile only the right side of my face would activate, producing a distasteful asymmetry that made me shudder.  And when I took a sip of coffee, I’d be unable to taste the familiar espresso tinge on the left side of my tongue. 

The Ears and Eyes

The prolotherapy injections significantly amplified my already existing ear and eye symptoms, too.  My tinnitus worsened, and my vision became so pixelated and the ghost-images so pronounced I could barely see straight. 

Incredibly, I also started having bizarre visual disturbances; as if obscure objects would appear out of nowhere and fly across my frame of vision before disappearing.  It was enough to make me feel like I was losing my mind, which by that point, I was. 

Although some of these bizarre visual issues have calmed down, I continue to have pain behind my eyes, as if I am permanently cross-eyed.  It feels like the muscles behind my eyes are too tight and they strain easily.  The pain varies from day to day, but the more I use my eyes the worse the strain becomes.  They act up when I try to read, which has made writing this blog especially challenging at times.  When the pain is at its worst, I can’t even do so much as open my eyes. 

Noise sensitivity has been one of the most frustrating and long-lasting symptoms. When I first got my concussion, I wore earplugs in loud environments because my head always hurt, but I realize now that my ears weren’t actually sensitive back then. 

It wasn’t until I began to abhor the sound of a water faucet that I fully understood what it meant to live with sensitive ears, which began soon after the injections. Now I wear earplugs 24/7 because, for me, even a normal conversation sounds like a piece of chalk skirting the wrong way along a chalkboard.  It sounds so intolerable you have no choice but to grab your ears and plug them immediately.  Without my ear plugs in, all noises make me cringe in that same way. 

Competing Pains

All of these symptoms were, of course, as shocking as they were devastating.  When everything was at its worst, however, the symptom that was most difficult to cope with was unquestionably the pain.  

The intense and growing pain in my arms was now competing with the pain in my head:

The pain in my arms was so awful it made me want to keep moving, mindlessly pacing about the house in a willful attempt to distract myself from the agony I felt.   Yet my headaches were so awful it made me want to do anything but move, and instead remain confined to the solace and safety of my bed. 

The cervical nerve roots extend in your arms and head, which were all irritated by the prolotherapy.

With my arms, nothing gave me relief.  And the pain was new, foreign and raw. It was as destructive as it was terrifying. My arms didn’t feel like my arms anymore.  They were hot and heavy.  They burned and radiated.  They were swollen and sensitive to touch.  They hurt so much. 

It was pain in its purest form. 

The kind that gives you no choice but to roll around and moan in complete agony.  The type that makes you gawk at the Ibuprofen, Tylenol and Advil’s of the world for branding themselves as pain-relieving medicine. The sort that keeps you awake at night. 

In fact, at the height of my pain I didn’t sleep for four nights straight. I felt sick with exhaustion but unable to satisfy my deep-seeded craving for rest because my body radiated with the deepest and most raw physical pain I’ve ever known.

Constant.  Incessant.  Completely and utterly unbearable. 

It felt like my arms bore the heavy metal armor from Tony Stark’s Ironman suit, except on top of this they were dipped in boiling water and placed in the hot sun to bake and fry. 

I remember wishing I could chop my arms off. 

I wanted them all gone, from the shoulder down.  For someone who has never felt pain of this sort, I imagine statements like this are quite shocking, but for someone who has, I know they understand. 

The pain was reactive, too.  I grew terrified of doing so much as showering, the heat and pressure from the water being too much to bear.  It created an excruciating increase in pain and, incredibly, caused me to temporarily lose the dexterity in my hands, leaving me unable to easily pick up a water glass.

If I did summon the courage to shower, my mother had to brush out the knots in my wet hair because I was unable to lift my arms above my head for fear of the impeding shooting pains that occurred if I did. 

In a meager attempt to combat this pain my Primary care doctor gave me Lidocaine patches to place directly on the areas of my arms that hurt.  These patches were meant to temporarily numb the pain and allow me to get some much-needed rest. 

A new routine ensued; every night my mom would peel off the protective wrap surrounding the patch and carefully place them along my arms, shoulders, back and neck as I winced in pain.  Unfortunately they did very little to reduce the pain, and I would often infuriatingly rip them off in the middle of the night. 

This routine continued even though the areas we placed them on began to develop tender, acne-like sores. I felt like I needed to do something to try and combat the pain, even if it didn’t help very much.  I needed to feel like some active measures were being taken to help me after so many failed attempts at recovery. 

This need was a familiar urge; a feeling that began when I first got hurt.  The need to feel better, to understand my injury and what was happening to my body, to return to the ice, to finish school, to start work.  

To get on with my life.  

We need to be better

Over time these needs materialized into desperation, and desperation and misguidance are not a good combination when it comes to recovering from any injury. 

Especially concussions. 

This post serves as an example of how wrong things can go during concussion recovery. Today, nearly one year since the doctor's appointment that changed my life, it is no longer the pain that keeps me awake at night but the fact that this simply didn't have to happen.  All of the suffering, the setbacks, the misdiagnoses and prolonged recovery should not have happened, which is why things have to change. The medical community needs to do better.  One-size fits all diagnoses have to change, perceptions must be adjusted and treatments need to be improved. 

I’m fortunate to have finally found a concussion program that is on the right side of progress when it comes to these measures, which I will write about in the coming weeks.