As Funny as a Brain Tumor! Part 14

After the events in Part 13, I started feeling like my regular self again. Life went on.  We moved a few times and ended up in Southern New Hampshire.  I have two more stories to share with you and then we’ll be done.  Hopefully, there will be no more to tell in future stories although I’m sure more medical travails await me in the future.  Thanks for hanging in there for the whole story.

Between 2002-2005 life went on.  Brenda and I had another child, Melissa and we were enjoying life up in NH. I had built up my private teaching to about 60-70 students a week and was playing in a great band every weekend. Things were going pretty good but there was one thing that was plaguing me and that was those damn headaches.  If you remember back to earlier in the story I told you about my headaches after the brain tumor surgery. They would come about once a week and totally wipe me out. Nothing would get rid of them that I had tried.  All I could do was take Tylenol PM, fall asleep and four to six hours later they were usually gone when I woke up.

Well during 2002-2005 the headaches increased.  They  happened more often and they became even more painful.  I am not exaggerating when I say that between 2003-2005 I think I had a headache about 98% of the time.  Sometimes, it would only be slight but other times I would be gripping my head and unable to handle it.  I remember countless times that I took my young girls to the park to play. They would be playing on the slides and swings and yelling for me to come join them and I would just be sitting on the bench holding my head.

As the headaches got worse so did my personality.  I  always tried to be nice and loving towards people but I remember so many times where I would just snap and yell at the girls. Not because of anything they did but just because of the intense pain I was feeling. Finally, I couldn’t manage anymore.  It was getting to the point where I couldn’t go to gigs or teach and was starting to call in sick. (One of the worst jobs is being a music teacher when you have a migraine…..Trust me! )

I went to my new doctor in NH and he  really had no answers for me. He ran a bunch of tests but was at a loss. He prescribed  me Vicodin for the times when it was really bad.  Now I went home and tried the Vicodin and have to say that it worked great!   I would be in total pain and then take a Vicodin and the pain would just melt away.  I would feel completely happy and normal.

You can probably see where this story is going.  I mean the thing is, I had these headaches all the time so……….I started taking Vicodin all the time!  I’d go back and get more, and then go back and get more and pretty soon instead of it lasting a month, it would be gone in two weeks. Finally, my doctor said he couldn’t give me anymore Vicodin. I was pretty upset.  With Vicodin, I could finally function, go to work, play gigs, teach, play with my kids and go out with my wife. All I had to do was take a couple of pills and the pain would go away.  Now, this doctor of mine, was taking that away!  What would I do now?  How would I function?

I went home that day feeling pretty sad. (Don’t worry, I wasn’t depressed like before) The headaches came back and I just went on trying to live with them (not to mention coming off of Vicodin cold turkey which wasn’t that great either)

A few weeks later,  I went to see my doctor and this time I was adamant that we needed to figure this out because there was no way I could continue to live like this.  I have to say that of all the things that I had went through up to this point,  nothing compared to a chronic illness.  The worst feeling in the world is to have something that is chronic and have no cure nor any idea what it is caused from or how to fix it.  I have the most respect for those of you out there that struggle with a chronic illness.  I understand how hard it can be!  It is horrible!

The doctor was making appointments with some specialist and on a whim I asked if I could see and eye doctor because the headaches seemed like they were always centered around my right eye. He made an appointment for me down at Mass Eye and Ear with a Neuro Ophthalmologist to check out my eyes which as luck would have it was the best thing I ever did.

I went down to Boston for my appointment and the doctor checked my eyes after I told him about my headaches.  Within seconds, he told me that I needed to have a VP shunt put in my head to drain pressure from my head.  I had no idea what he was talking about and he explained that my right eye’s optic nerve had extreme swelling and he knew immediately that there was too much intracranial pressure in my head. He scheduled a spinal tap and sure enough, the pressure in my head was too high. The doctor didn’t know why or what was causing the high pressure but he said the important thing is to get the VP shunt in place to decease that pressure ASAP.

A few days later, I went in for the surgery to put the VP shunt in.  VP stands for ventriculoperitoneal shunt and here is a description from Google in case you are interested:

A ventriculoperitoneal (VPshunt is a medical device that relieves pressure on the brain caused by fluid accumulation. VP shunting is a surgical procedure that primarily treats a condition called hydrocephalus. This condition occurs when excess cerebrospinal fluid (CSF) collects in the brain’s ventricles.

I was admitted to the hospital and later a nurse came in to shave the area of my head where they would be operating. The shunt would be under my skin on the top right side of my head.  It would have a tube that ran down through my skull and into the ventricles in my brain.  It would then have another tube that ran down my neck, across my collar bone, down my chest and end near my abdomen somewhere.

I would have a pretty nasty scar on the top of my head, up near my collar bone and down near my abdomen to feed the line to I guess.  It would drain any excess fluid in my brain down to my abdomen whenever the pressure would reach a certain point. This would relieve the pressure and hopefully get rid of my headaches, fix my eye and return me to a normal life.

Although I was nervous about having another surgery involving my brain, the Neurosurgeon explained that he did VP shunt surgery regularly and that he was very optimistic that the VP shunt would solve my issues.   As nervous as I was about having the surgery, the prospect of no longer having these headaches every day was more than enough incentive for me to face my fears and get the surgery.

The surgery went perfectly.  I woke up with a bandaged head and could feel the bump of the shunt on my head after they took the bandage off.  I could also feel the drainage tube under my skin running down the side of my neck.   Although I didn’t feel very good after the surgery, I did feel that my constant headache was gone!

This is how I looked when I woke up. Looks sort of like a mug shot……

I had to go back for a few adjustments over the next month but once the shunt was set right………my headaches were totally gone. Now you have to understand that going from having severe headaches 98% of the time to none is like being releases from jail after 20 years.  I was free!  I was smiling, I had more energy than ever.  Right after this time, is when I started my website, wrote all my books and started practicing again. From 2002 -2005 I couldn’t do much of anything because of these headaches but after the VP shunt, the floodgates were opened.

Without the Bandage (almost looks like a saxophone…….)

A few weeks after the shunt was finally set up, I woke up one morning and my youngest daughter came up to my bed and said “Good Morning Daddy!”  I looked at her funny because to be honest, she sounded demon possessed.  I had heard two voices when she spoke.  Her normal voice and then another voice at the same time that was lower.  It actually freaked me out a bit.  I went downstair and sat at the table eating breakfast and all the girls voices sounded messed up.  I heard two voices every time they spoke.  Now this was alarming and weird but what happened next really scared me.

My wife put on some music and it sounded horrible.  I mean it was the worst music I had ever heard.  I told her how bad it was and how out of tune the musicians were and she thought I was crazy. A little later, I went to play my sax and my sax sounded messed up also.  I thought my saxophone was broke.  I played a G Major scale and half way up the scale the notes were incredibly flat.  I played a C major triad on my piano and it sounded horrible also.  All out of tune and like some dissonant chord from hell.

I really flipped out at this point and immediately went down to the Mass Eye and Ear emergency room that night.  After a bunch of tests, they had no answers for me but left me with………”Let’s just see if it goes away.”  “You’ve got be kidding me”, I thought.  I’m a professional musician and I can’t even listen to music.  As luck would have it,  the next day we were going to Disney World so I had no gigs for the next two weeks.

My daughter’s face standing in front of me perfectly sums up how I was feeling during my Disney trip with the family because of my messed up hearing.

My family and I went to Disney World in Florida.  The happiest place on earth and I was a total emotional wreck.  For the ten days we were there, my hearing never got better.  My wife just kept telling me to let it go but of course it was impossible for me to do that.  Finally,  the next to last day there I had to leave dinner because of a really bad headache.  It was so bad that I was nauseous and had to go back to the hotel room.

Back in the hotel room,  I had a long talk with God.  I had learned over the past years to express my feeling and be real and I felt like I did that in prayer that night.  I was scared, mad and very confused because of what God was now putting me through.  After all I had been through……….my headaches were finally cured, I could now enjoy life and be somewhat happy and now it seemed like God was taking away my hearing so I could no longer be a musician!

Now at the end of this prayer this is what I said:

“God, I’m going to try to have faith here and I believe you can heal me. I know you have always worked in my life through doctors and hospitals and I am glad you have.  I guess what I’m wondering is why you can’t just do a real miracle.  Why can’t I just pray for something and you answer my prayer.  Not with doctors, not with hospitals but just you answering my prayer so I know it is you and that you heard me and loved me enough to help.  I just ask that this one time you help me like I see that you did for people in the Bible.  I pray that you just cure me so that I finally know that you really exist and I won’t doubt anymore.  Just this one time can’t you do that for me?” The Last Chapter.……….

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


  1. Avatar Joe Molinaro says

    Hi Steve: Well, I finally finished your story and what a piece of work it was, incredible needless to say. I can hardly imagine going through what you did and keep my sanity!

    I too am strong willed but not exempt from depression at times and am a firm believer in the Lord since I was a teen due to many experiences but none as significant as yours.

    I was however, diagnosed with CLL (chronic lympocytic leukemia) several years ago, which if there is the better leukemia to receive, I have it! It was discovered due to an elevated white blood cell count. What causes it, not really known. The good part is that it may never require chemo or other treatments and so far so good, needless to say I pray every night!

    Enough about me, hopefully you have paid your dues for what ever reason, and will live a long, healthy, prosperous life for you and your family. I am certainly not a holly roller and I do not preach, however I do believe there is a healer in GOD, faith, and the mighty BRAIN, which can be a healer or killer! CIAO Joe Molinaro Jr.

  2. Avatar Joe Molinaro says

    Hi again Steve, I do not normally run my mouth but I have to comment once again relative to your lovely family, you have been blessed with a lovely caring wife, which today is almost unheard of, I think your next problem will be fighting off the guys pursuing your lovely daughters!!!

    Ciao and BELLA to your Wife and Daughters

    Joe M.

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