As Funny as a Brain Tumor! Part 5

Here we are at Part 5 in the story………….A couple of days after the whole “LensCrafters” experience,  I decided to go get some chinese food with a good musician friend of mine down in Boston. We met down in Chinatown in Boston for a late dinner. During dinner,  I told him about all the things I have just told you in Parts 1-4 of this story.  I remember going through every detail.  He was fascinated and was asking a lot of questions.  Needless to say, he was bewildered at why I hadn’t gone to see a doctor yet.  He told me that his Dad was a prominent Psychologist in Boston and asked if he could talk to him and get some advice from him about my situation.  I answered  “Sure. That’s cool”.

The next morning,  I went to work at my job at the convenient store.  I kept hearing my friends voice in my head asking why I hadn’t gone to my doctor as I sat in my office.  I decided to call a doctor to make an appointment for a physical.  I think it was a 3 or 4 month wait until I could get the initial physical for a new patient.  I don’t remember going into all the details about what I was going through but I just booked the physical for their next opening in 3-4 months.

A few minutes later, as I  was counting money in my back office, the phone rang.  It was my friend that I had had dinner with the night before.  He told me that he had talked to his Dad and his Dad said I should go see a doctor ASAP.  I told my friend not to worry and that I had made an appointment for 3-4 months later which was as soon as they could see me.  I remember him saying that he thought that was too long to wait and that he would call me back.

He called me back a few minutes later  with a very serious and urgent tone.  He said that he had talked to his Dad again and that his Dad said that my situation sounded serious and that I should leave work immediately and go to the Mass General Hospital emergency room.  I honestly thought my friend and his Dad were overreacting a bit and told him I would go after I was done with work that day.

I hung up the phone and started to count the rest of the money on my desk but was having trouble concentrating.  I kept thinking about what my friend had just told me and was getting more and more anxious.  Finally, I put all the money away in the safe and called my friend to ask if he would go with me to the hospital.  He said he would meet me down there. (I know what you’re thinking “Finally!”)

The drive down to Boston took me about 25 minutes.  I remember feeling like a nervous wreck the whole way down. When I got to the emergency room it had a fair number of people in it.  If you’ve ever been to a big city emergency room you know that it can be filled with people with quite a variety of problems.  I remember sitting in a corner just giggling and laughing while people around me were bleeding, throwing up, crying and rocking in pain.  I was laughing the whole time.   These sick and perhaps dying people were looking over at me like I was an idiot.  My friend got there and sat with me for what seemed like hours.  Finally,  they called my name.

I walked over and the triage nurse asked me why I was there.  I remember just pointing to my face while laughing hysterically and saying “This!”  She was a bit confused so I went into detail about everything I have told you up until this point.  I remember going back to my seat and waiting some more.  Finally, they called me again and escorted me back to a room where they asked me to change into one of those awkward hospital gowns that are open in the back.

I waited there for awhile and finally a doctor came in.  He asked me all the same questions the nurse had.  He had me go through a bunch of weird tests that I thought were bizarre.  He would have me point at an object and then touch my nose over and over again. He would touch and scratch various parts of my body and ask if I could feel it.  He had me walking in straight lines and standing on one foot.  He would press down and up on my legs and arms and ask for me to push against him.  It felt like a DWI test being done by a state trooper………….Yes, I had one of those done once (I passed, but that is another story).  Remember,  that I am laughing during all of these tests.

Finally, he said he would like me to get an MRI.  Everything I had told him made him think it was something neurological and that an MRI would be the best course of action.  I’m not even sure I knew what an MRI was back then but I agreed to have it done.

I remember going into the MRI machine and thinking that it was like being in a coffin.  Your in this long tube and the ceiling is maybe 16 inches from your face.  I don’t think I am claustrophobic but this enclosed space was making me pretty nervous………The difficulty with having an MRI at that time was that I couldn’t stop laughing.  To get good MRI scans,  you have to lay as still as you can.   I was laughing and bouncing all over the place.  You wear these headphones they give you inside the machine and can listen to any kind of music you want so that the noise of the MRI isn’t as bad.  They asked me what kind of music I wanted to listen to and of course I said “Jazz”.  They said “No problem, we have that”  and to make my situation even worse, Kenny G started playing in my headphones!  “Lord, just take me now” I thought…………..

As the MRI machine started it’s imaging,  the smooth mellow sounds of Kenny G kept being interrupted by a man with a low  growly “Barry White” type voice saying “Don’t move”  “Please stop moving”  “Please remain still”  “DON’T MOVE!” (I detected a  degree of increasing frustration in his voice and his words went from sounding like pleasant “Barry White”requests to what sounded like harsh “Barry White” commands and then finally threats within a few minutes).  They finally got the scans they needed after what seemed like hours in that machine and I went back to waiting in my small room.

Not too long afterwards,  a doctor came in with his best “sensitive” and “I care” facial expression and told me that they had looked at the MRI.  In what seemed like a surreal dream,  he told me that they found a tumor about the size of a golfball on my brain MRI.  The tumor was apparently crushing my brain stem.   I was laughing when he told me and my response was “That’s terrific!”  He thought maybe I had misunderstood him and repeated what he had told me the first time.  I had the same reaction…….. I laughed ecstatically.

You have to remember,  that up until this moment in time I was thoroughly convinced that I was going insane.  The relationship with my fiance at the time had ended badly,  I had lost my music gig and wasn’t playing at all,  my job performance at my day job was getting worse and worse, my friends all thought I was having a nervous breakdown or something .  I couldn’t have a normal conversation with anyone without totally losing it and cracking up laughing.  I couldn’t go to the bathroom in public.  I couldn’t watch a movie without ruining for everyone in the theater.  I was seeing a Psychologist for my problems and getting nowhere………  I was totally convinced that I was going crazy……………… When that doctor came in and said there was something physically wrong with me that was causing all of this,  that was one of the happiest moments of my life.  It was great news!  There was something physically causing this and maybe there was something that could be done about it.  I wasn’t crazy!!!

After my initial diagnosis, the visits and meetings at the hospital are a bit of a blur in my memory.  I think I was there for a few days initially as they performed various scans and tests.  I remember seeing a multitude of doctors.  MGH (Massachusetts General Hospital) is a teaching hospital so these large groups of interns would come in trailing the doctors like on Grey’s Anatomy and ER.  I would get the same questions from every doctor and every intern over and over again.  I also remember them performing multiple tests on me like that first Neurologists had done in the ER.   At a certain point,  I just felt like saying “Can’t you just ask the other 20 people that have done these same tests on me already?” I must have done that test probably twenty times. Touch your nose, touch my finger. Can you feel this?  Can you feel this? Follow my finger with your eyes, etc…….on and on……….

MGH  asked if they could have a bunch of doctors come from the Boston area hospitals to meet with me because of my intriguing symptoms (mainly the laughter symptom I think).  I went into this board room and there were about twenty of the top Neurologists from all the major hospitals in Boston asking me all about my story.  They actually video taped that session. (I would love to get my hands on that video tape just to see it)  These were some of the most serious and intense people I had ever talked to in my life and I was laughing hysterically the whole time.  I don’t remember them even cracking a smile. (They were tough…….) They all asked me the same questions and I recounted my story just like I have for you here.  They were taking notes and  kept apologizing for all the questions.  I got the feeling that brain tumors that cause laughter aren’t very common……….

The way the Doctors explained my situation to me was that the tumor was crushing my brain stem.  They showed me the MRI pictures and compared them to a normal persons MRI.  With a normal person,  you will see a nice roundish brain stem that leaves the brain and is attached to the spinal cord.  In my situation,  right where the brain stem should have been was a big white golf ball type object.  The brain stem was completely smashed over to one side and was squeezed into a thin line making it’s way around the tumor.  What the doctors thought was happening,  was that my brain was sending signals to my body and the signals were getting delayed or distorted by the smashed brain stem.  When I would go to drink some water,  it would get half way down and then the automatic message to swallow would get stuck in the brain stem.  The same thing would happen when I attempted to go to the bathroom.  My brain would send a message to my body to go to the bathroom and the message would just get stuck in that smashed brain stem.  The laughing was caused by my brain sending my body a signal and the message sent would get all convoluted and come out as “LAUGH”.

The doctors finally decided that the best course was to operate and try to take the tumor out physically.  Now this was a pretty dangerous surgery but we’ll get to that later.  In the meantime, they sent me home for two weeks until the surgery date.  I’ll get to the details of that in the next installment (Part 6)

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Steve About Steve

Steve Neff has been playing and teaching saxophone and jazz improvisation around the New England area for the last 30 years. He is the author of many effective jazz improvisation methods as well as founding the popular jazz video lesson site Neffmusic.com.

Comments

  1. Steve – thank you for this . . . it’s riveting – and I don’t watch ER, but it’s the most unbelievable account of a medical story I’ve ever heard!
    oxox
    Elaine

  2. Avatar Sean Kelly says

    Wow!

    Just wow!

  3. The symptoms which are prevalent in you are very rare. Any way the story is quite fascinating.

  4. wow heavy stuff!!! very weird!!

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