Month 2: MTBI becomes PCS

The second month of recovery was no different from the first.  I had some small improvements in my symptoms, but they're all still hanging on.  As of today, I've had a headache and nausea every hour of every day for nine weeks.  My speech is slightly better, but still not good.  I haven't regained any of my lost skills yet.  My emotions are still on lock down.  

You may be wondering how I can write these blog posts.  It isn't easy.  I am a medical writer by profession, and used to writing dozens of pages of data dense and highly technical text on a daily basis.  These posts take hours to write and wear me out for days afterwards.  I push myself to do it so I have both a means of communication and a connection to life I had before my brain injury.

Most people with MTBI recover within days or weeks of their injury.  When that doesn't happen, it becomes Post-Concussion Syndrome (PCS).  PCS can last for months or years, or forever.  It is poorly understood, and recovery from PCS can be very erratic with many regressions.  It's the reason why careers end after MTBI.

A visit to my neurologist at Week 6 confirmed that I hadn't recovered from MTBI, and my diagnosis was now PCS.  I was devastated.  My neurologist referred me for a neuropsychological evaluation to determine exactly where my deficits were, and to recommend a rehabilitation program to improve my brain function.

On August 12, I went to Bryn Mawr Rehabilitation Hospital for the neuropsychological evaluation that included an extensive interview and several kinds of neurological and cognitive assessments. The evaluation was in the morning, which meant I was fresh and not tired when I started.  Best foot forward, and all that.  I thought I did pretty well, and was a little surprised when the psychologist called me the next day to tell me I needed physical therapy for vestibular and fine motor control issues, occupational therapy for cognition and vision, and speech therapy.  

Scheduling all these therapies is difficult.  People take vacations in the summer...even people who provide therapies at brain rehab hospitals.  My first sessions aren't until August 29 and 30.  I'm very impatient and want to get started immediately...the sooner I start, the sooner I get my life back. The plan is to repeat the testing after 6-8 weeks of therapy to see how I'm doing, and if I'm ready to start transitioning back to work.  

What I thought was a week off from work will now be more than 4 months.

I received the written report of the neuropsychological evaluation a couple of days ago, and  I was horrified by what I read.  My scores for some of the cognitive skills were in the 15th-20th percentile. I scored very low for verbal memory, reaction time, visual motor speed, processing speed, attention, visual processing, and expressive language.  Cognitive efficiency (the speed to balance demands of speed and accuracy) was the worst, at 7%.  My expected pre-injury baseline scores were well above average...in the top percentiles.  And here I am now, with only a small fraction of my previous cognitive abilities.  

I am a scientist and a writer, but the part of my brain responsible for those things isn't working.  My analytical skills are missing.  My verbal communication is poor.  I cannot properly understand or develop strategies.  

The road just keeps getting longer.

How many times can I use a form of the word "feel" in one blog post?

In the beginning, people asked me how I was feeling.  I could name my physical symptoms: headache, nausea, facial pain, visual disturbances, balance problems, difficulty with fine motor skills, and pervasive mental fog.  I had an acceptable answer to the question, especially if the person asking was trying to evaluate my recovery.

Naming my emotions was more difficult.  I didn't have any.

I feel nothing at all most of the time.  

The first time I cried was 6 weeks after the accident.  I was trying to convince my neurologist to send me to intensive inpatient brain rehabilitation.  It felt like I was fighting for my future without any weapons.  The sudden realization that I had no ability to determine my own destiny was soul crushing, and without warning I started to cry.  And then apologize for crying, because it's never appropriate to cry in your neurologist's office. 

I've cried only twice since then, and only briefly.  Both times it was for the same reason: the soul crushing truth that I had no ability to determine my own destiny.  It's a damn good reason.  I'm mildly surprised that I don't cry all day, every day...but I don't.  Even though I have a lot of other damn good reasons to cry.

Occasionally I have something that is akin to anger.  In the early weeks after the accident, I would have sudden flashes of anger born of frustration.  These flashes would last only a few seconds...not long enough for me to speak or to act on them.  Lately I feel something that is more like righteous indignation when I read about the injustices in the world.  It lasts for a few minutes, but fades away without an ability to act on it.

In 9 weeks, I still haven't laughed.  I tried once.  It sounded like a cross between a cough and a stutter.  Nothing is funny now, even stuff that I know on an intellectual level is funny.  I just can't connect to it.

I also can't listen to music.  Or sing.  Or dance.  I can't feel it.  

Sometimes I wonder if my brain is sequestering my emotions to prevent me from losing hope that I can recover completely.  When the strongest thing I feel is overwhelming despair, it's probably a good thing I don't feel anything very often.

I feel less than human.

* 8 times, not including the title.  That's also the number of times it took me to count the number of times without losing my place.  And I'm still not sure it's accurate.

Recovery, Month 1: Symptoms and Daily Life

There is no treatment for MTBI.  My doctors told me to rest my brain for a month and wait for the symptoms to ease.

How do you rest a brain?  Don't give it anything to do.  That means no working, no reading, no thinking, and minimal stimulus.  For me, that meant being alone in a quiet house, usually laying in bed or sitting on the couch, sleeping up to 15 hours a day.  It sounds easy enough, but it's not a natural state.  Our brains are meant to be used, but mine was out of order.

The physical symptoms continued.  I had a constant headache and nausea that got much worse if I tried to use my brain, or if I had to ride in a car.  If I moved my head too quickly, I'd lose my vision and nearly pass out.  Noises, including conversations, could easily overwhelm me and cause my brain to stop processing information.  The confusion and fatigue did improve, thanks to the Adderall my neurologist prescribed.  My speech was still not fluid, and the struggle to communicate wore me out. 

To keep my sanity, I did read a little or watch some TV.  I discovered that I had the reading comprehension of a 9 year old, and that I couldn't maintain concentration to read anything longer than a newspaper article.  I could only watch TV shows that had simple, predictable formats, and that didn't require remembering a previous episode.  Movies were too difficult for me...I missed a lot of the dialog and most of the nuances of the plot. 

Social networking was too difficult to navigate.  I could read status updates on Facebook, but I was never really sure I understood what people were saying.  I didn't dare post or reply, because I couldn't trust that my responses were appropriate.  I did manage to update my status after a few weeks.  That simple post took an hour to write. 

I kept a running list on a steno pad to remind me of the things I needed to do:  fill out insurance forms, schedule appointments, pay bills, and any other tasks.  Each day, I would review the list and figure out what the priority was, and try to accomplish that task.  Then I'd write down the date I completed it, and any notes about it.  Otherwise, I couldn't remember any of it.

In spite of my obvious limitations, I was hopeful that by the end of a month I'd be back to normal and ready to return to work.  I contacted my boss and my case manager to try to get a transition plan in place to resume working.  I didn't understand that I was still profoundly impaired and in no shape to do my job.  Thankfully, my case manager understood the situation and helped me recognize that I couldn't come back yet. 

I rested and waited for my brain to start working normally.

WTF is MTBI?

MTBI is mild traumatic brain injury.  According to the Brain Injury Association of America, the term "mild brain injury" can be misleading.  The term "mild" is used in reference to the severity of the initial physical trauma that caused the injury.  It does not indicate the severity of the consequences of the injury.  

I found this out the hard way.  

I had no broken bones.  The swelling and bruising in my face resolved after a few days.  But the damage inside my brain was only beginning to become obvious.

The initial treatment for MTBI is brain rest.  I believed that if I took it easy, I'd be just fine in a few days...a week at most.  Many people do recover in a short time.  

This time, I am not one of them.



More on MTBI:
http://www.biausa.org/mild-brain-injury.htm

How did I get here? The accident and the injury

The Accident

On Saturday, June 22, 2013, I got into a cab in Brooklyn with my daughter for a trip to Manhattan. There was a lot of traffic that day, but finally a lane opened up and the cab accelerated.  A pedestrian appeared in the path of the cab and the driver braked hard to avoid hitting him.  The cab hit the pedestrian, but at a slow enough speed to avoid significant injury.  The pedestrian got up and left the scene.  The  cab driver stopped, but then drove away.

Meanwhile, in the backseat of the cab, I hit the partition face first.  My head was turned a little to the right at the time of impact, which spared my nose from being broken.  Intense pain radiated through my head and a fog of confusion, dizziness, and nausea enveloped me.  My daughter kept telling the driver that I was injured, but she drove on to our destination without reporting the accident or seeking medical help for me.  

The Injury

Even in the fog, I knew I had a concussion.  Unfortunately, I didn't comprehend that I needed immediate medical attention.  I tried to function normally, managing to return home to PA the following day by train.  My headache, confusion, dizziness, and nausea were joined by swelling and bruising of my face, and difficulty speaking.  I slept for more than 20 hours but didn't feel any better. I struggled to try to work from home for a few hours before giving up and heading out to see my doctor.

My doctor diagnosed me with a mild traumatic brain injury, and told me to rest completely until it was better.  The x-rays showed that my facial bones and skull were only bruised, not broken.  The MRI showed there was no active bleeding in my brain.  My brain was bruised,  and there was damage to the individual brain cells and connections between them.

I saw a neurologist who did a more in depth assessment that showed I had significant deficits in cognition, speech, vision, balance, and fine motor skills.  I needed rest...lots of it...so my brain could repair itself.