Diving Deeper Down the Rabbit Hole.

8. Over 40 Different Health Professionals, Lots of Bad Concussion Advice, and Diving Deeper Down the Rabbit Hole

So far I’ve written a lot about concussions, my various symptoms and their causes.  Now I’d like to share the personal parts of my story that got me to this point – a twenty-three year old Yale graduate living at home with chronic and debilitating pain.

I never thought I’d write a blog about my concussion.  In fact, it was the last thing I wanted to do.  For a long time I wanted nothing to do with this injury.  I wanted no part in sharing my story, being a resource for others, or advocating for awareness and change.  All I wanted was to get better and never hear the word ‘concussion’ again.  Over time, though, I realized I had important information to share, and that maybe writing, connecting with others and advocating for this cause could, in its own small way, be a form of healing for me too.

Here is more of my story:

Way Too Many Doctors

Before I found the right doctors who were actually qualified to treat my injury (which, I will again point out, took me over a year and a half), I sought help from so many other doctors.

Trust me, I wasn’t complacent when it came to my recovery.  In fact, I couldn’t have been more proactive or motivated to get better. I followed every order given by every doctor.  The first order, of course, was cognitive rest.

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So, it all began by cocooning in the darkness of my room with nothing to do but listen to Jim Dale read the Harry Potter audiobook series aloud.  Because I was advised not to read, watch TV or use the computer, audiobooks were a nice way to pass time without inhibiting recovery. Yet, after completing the entire Harry Potter series on audiobook, it soon became clear that I was not recovering in a timely manner.

Each night I’d go to bed hopeful that I’d wake up and feel like myself again, blissfully eager and ready to return to the ice and finish off the last few months of my hockey career at Yale.

But each morning I’d wake and slowly sit up in my bed only to be met with the ominous realization that my headache was still very present, my vision still fuzzy and my ears still ringing.  This, of course, meant another day in the dark listening to Jim Dale’s voice.

I will never forget when the Sports Medicine doctor at Yale told me with 100% certainty that I’d be better in time for my team’s league games in January (a mere three weeks away at the time).  So when this wasn’t happening, when the protocol he felt so sure of wasn’t working, I started scrambling to find more help.

I began reaching out to everyone I knew who had a concussion and sought their advice.  What treatment worked for them?  How long did it take them to get better?  What tips did they have to help me speed up my recovery?

All in all, since suffering my concussion I have seen over forty different health professionals spread across twenty-one towns, five states and two countries.

Neurologists, functional neurologists, neuro-opthamologists, neuro-optomotrists, psychologists, psychiatrists, chiropractors, osteopaths, naturopaths, acupuncturists, massage therapists, physical therapists, physical medicine and rehabilitation doctors, vestibular doctors, ER , jpdoctors, primary care doctors and sports medicine doctors.

I’ve seen them all.  Visits with these doctors adds up to well over 200 different appointments (and counting).  Yet, none of these numbers are as startling as this: it took me 528 days to finally find the two doctors who had the expertise and knowledge to adequately treat my concussion.

The 18 months leading up to this were unquestionably the hardest of my life.  I felt like a chicken running around with its head cut off.  I was desperately trying to find the help I needed to get well and every time I came up far too short.

Along with the standard Post-Concussion Syndrome diagnosis, I was told I had all sorts of things wrong with me: Postural Orthostatic Tachycardia Syndrome, Tullio Phenomenon, Labyrinthine Contusion, Post-Trauma Vision Syndrome, Barre-Lieu Syndrome, and even Post Traumatic Stress Disorder.

I could go into detail about what all of those diagnoses mean, but it isn’t important because I don’t actually have any of them (and never did).  What I do have (as I mentioned in my post last week) is structural damage to my neck and the base of my skull, which keeps my nervous system in a heightened state and continually sends intense referral pain signals to the areas surrounding my brain.

I will continue to write in more detail about this in the coming weeks, but right now, I think it’s important to highlight how destructive it can be when patients are misdiagnosed and left frantically searching for help.

Bad Advice After Graduation

Even though I had constant headaches, vision issues and tinnitus, I was able to graduate (which I couldn’t have done if it wasn’t for the support system Yale put in place for me, i.e. extra time, note takers, and accommodating professors).  However, that final semester took a heavy toll on my heath, and by the time I graduated I was dying to get home and spend time in bed recovering.

Once home, I continued to devote a large majority of my time researching concussions and treatment modalities, all while managing the pressures that inevitably come after graduation by trying to find a job.

Fortunately, over the summer I managed to secure a great full-time job at a private equity-consulting firm in Boston.  Unfortunately, it happened before I was fully recovered.

So I delayed my start date in order to get evaluated at a brain rehab facility in Atlanta. This facility met all of the criteria for a place that could really help me.  It had a smart, approachable and professional staff of doctors.  It had extensive and thorough diagnostic testing, state of the art technologies and treatment modalities.  And it had a long history of effectively treating concussions and various brain injuries.

I so badly wanted this to be the place that helped me get my life back.

It wasn’t.

I spent five straight days at this facility getting treatment for Postural Orthostatic Tachycardia Syndrome (POTS).  The doctors in Atlanta claimed that this syndrome often occurs after an individual suffers a concussion, and in order to treat the concussion this needed to be treated as well.  POTS is a condition that affects your autonomic nervous system and involves an abnormal regulation of your heartbeat.  POTS’ symptoms are influenced by gravity: when an individual goes from laying down to standing, their heartbeat rapidly increases more than 30 beats per minute, inducing headaches, light-headedness, dizziness and more.

I will admit this diagnoses was not a bad guess considering the gravity component associated with it.  As I mentioned last week, my headaches are driven entirely by gravity and I get relief when I lay down just as patients suffering from POTS usually do.

Either way, my treatments began with therapy on a tilt table. This involved lying on a table that electronically changed positions from horizontal to vertical as my brain was being stimulated through different exercises.  It is actually a great method for treating patients with POTS because it works to normalize your heart rate, but unsurprisingly, it didn’t do anything for me.  I was also given a variety of eye exercises to re-acclimate my vestibular system and create plasticity within my brain.

I did everything they told me to do while relentlessly drilling my doctor with questions about my injury, my recovery timeline and recommendations moving forward.

My doctor was certain I would make a full recovery in one month’s time.  This was great news because it would give me just enough time to focus on healing before I started my consulting job.  He assured me that working a full-time job would not make things worse even if my symptoms weren’t fully resolved.

He also told me to stop seeing doctors and, above all else, avoid getting any “inappropriate” treatment done on my neck.  I kept telling him I believed my symptoms were being generated from my neck, and he kept insisting that I was wrong.

Nonetheless, I took his advice and headed home feeling fairly optimistic, despite the fact that I didn’t feel any better than before I got there.  This hearty optimism very quickly began to dissipate, as each day with no improvement was also another day closer to when I would begin work.

Instead of experiencing the long-overdue relief I had grown accustomed to daydreaming about, I was met with the heart-breaking realization that I simply wasn’t recovering.  Except by that point I was out of time and options – I had to start my job in October.  All I could do was hope that my symptoms would remain somewhat tolerable and eventually resolve on their own.

They didn’t.  They got so much worse.

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Have you done an Upright MRI of your neck to look for any brain stem compression? Also have you found any medications that have helped?

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Thank you for sharing! Once again, totally relate. So many doctors are clueless. We’ve also been to numerous, including in other states. Still searching.

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