3/31/15 @ 3:45pm, “a mass in the midbrain; likely represents a primary mixed glial neoplasm”

Look for the white marble, that's my tumor, Bob.
Look for the white marble in the middle, that’s my tumor, Bob.

Um, what?? I just came out of my 2nd MRI appointment which I was referred to in order to get a better look at “something” using contrast dye.  Everyone one said not to worry, it won’t be anything.  That’s what we say. That’s what we all hope to hear. Then I read the report from the 1st MRI taken two days earlier, the one in which they saw “something” according to the neurologist’s receptionist who called to set up my second appointment. She also scheduled a follow up with my neurologist for the following Tuesday.

First off, the fact that I have a Neurologist is surreal enough.

I had begun having some involuntary muscle movements about a year ago.  My boyfriend started saying that I seemed really restless when we were relaxing on the couch.  I thought I was getting restless leg syndrome, and maybe I was.  Then my shoulders started twitching some, more noticeably while driving with my hands clenching the steering wheel. I started feeling the overwhelming need to stretch my arms, and to move my head around to stretch my neck. I disguised most of the involuntary movements as stretches and adjustments to not draw attention to myself.  I thought it was from stress or anxiety, or even psycho-somatic.  These sensations were getting progressively worse, causing a great deal of discomfort in my shoulders and neck, over the past six months.  My roommate also began noticing (and telling me) that my memory was getting worse.  My memory has never been great, so that was hard for me to notice.

I made an appointment with my psychiatrist to ask him if this could all be side-effects of the anti-depressant and/or mood stabilizer that I take.  After reviewing the nature of my movements, he suggested that I make it a priority to see a neurologist and request an MRI.  That alone freaked me out.  It’s what I expected to hear, but did not want to hear.

My primary care physician disagreed with my psychiatrist’s opinion, but agreed to refer me to a neurologist.  The neurologist suggested that I had a neurotransmitter imbalance and prescribed gabapentin to see if that would help.  He ordered an MRI at my request and told me that it was just to rule out any other cause, but that he was sure there would be nothing found.

A close friend emailed my MRI reports to a neurosurgeon with whom he is a personal friend.  He responded quite quickly, from a beach in Southern California where he was vacationing with his family.  I was told via my friend that the doctor said this is most likely an inoperable tumor as it is on the top of my brain-stem and that we will need to get a biopsy of the tissue. He asked that I schedule with his office for next week, following my neurology appointment.

I am in the waiting zone between knowing “something” is wrong and knowing what it is and what can be done.

And so, more will be revealed in this journey of discovery.


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