The Journey Begins

Hop into the Way-Back Machine with me…hang on tight we are going back to the 1970’s to when I was about 10 or 11 years old – and I must say I was a very cute kid, but you all knew that since I am so incredibly handsome now.

The scene is Mimi and John’s living room; I had another headache and was trying to rest on their old ottoman.   I distinctly remember a conversation between my mom and Mimi, apparently parents and grandparents don’t know that sound travels.  I can’t remember who said what but the conclusion was that I was too young to be having so many headaches, so mom would be calling the doctor to get me looked at.  This started me down a road of being poked and prodded by medical students and doctors, getting x-rays and other tests.  I remember being in a dark office with electrodes stuck to my head and going through a series of tests which I recall not being fond of.  After all of this, the conclusion was that I was suffering from chronic sinusitis.

I lived with that diagnosis for the next thirty some odd years.  After that diagnosis whenever I had a headache I grabbed some Tylenol Sinus or I would combine regular Tylenol with Aspirin.  I don’t recall a lot of headaches during my teen years, but hey they were my teen years.  College came and I might get a headache every two weeks or so, but I figured it had something to do with ten cent beer nights so I wasn’t too concerned.  By my late twenties I was getting at least one headache a week, still thinking it was sinus related I just kept downing Tylenol Sinus or Advil Sinus.  In my thirties the headaches were getting stronger and more frequent, still thinking it was sinus I kept taking over the counter sinus stuff, or if they were real bad I would grab some Excedrin Migraine.  I think I was around 40 when I ended up with a brutal headache that lasted a week so I dragged myself to the doctor and after about 30 seconds she determined it was a stress headache, gave me a prescription and sent me on my way, thanks for nothing doc.  For the next five years the headaches got more frequent and more painful, but I just kept on taking over the counter pain reliever.  By this time I was trying everything to stop the pain, I even tried a Neti Pot which was just a waste of money, so I went back to over the counter sinus meds. 

Time to turn the Way-Back Machine around and travel to more current times…The machine brings us to January 2012, the headaches were getting stronger and more frequent, it seemed like anything I did caused a headache.  I spent the summer knowing that I was going to be in agony every time I had to mow the lawn, or lift anything more than a few pounds.  During baseball season I thought I would pass out if I pitched to the kids or waived them home from third base because the pressure would build and the pain would be intense.  During football season cheering for my son’s team would result in the same thing, intense pain and me praying I didn’t pass out.  Still thinking it was a sinus problem I decided to try Sinus Buster in August, the stuff burns like hell but it seemed to work.  The headaches started to dull and I had a glorious two week span when I didn’t take any over the counter pills.  That wonderful two weeks ended on Friday September 7^th, 2012.  I was driving home from work when I felt a pain that started in the back of my head then moved to the front of my head and made me want to gouge my eyes out.  I sprayed some sinus buster as soon as I got home, but it didn’t work, let’s just say I was disappointed.  One week later I was still in pain so I decided to go to see my doctor.  I believe my wife said something along the lines of “it’s about time…”  It took a few days to get an appointment but I finally got in to see my doctor.  He talked about the pain presenting like sinus, but I didn’t have pain in the sinus cavities, he mentioned migraine, stress headache, etc.  Finally he decided I better see a Neurologist about the headaches and gave me some prescription pain med’s.  The prescription pain med’s don’t do much for the pain; they just make me not care about the pain.

I called the Neurologist’s office…holy freakin’ cow he can’t see me until November 1^st.  October was the longest month ever.  November 1^st finally comes and I get to see a Medical Student first so I describe the symptoms to him, then the doctor comes in, and I once again describe the symptoms.  Apparently he missed the class on bedside manner because he had none.  He acted like I was bugging him with my little headache problem and said it was most likely migraines.  At this point I was about to jump across the room and choke him, I think he sensed my displeasure and decided he better order an MRI.  It was during the MRI that I discovered that I am claustrophobic – thanks mom J.  About 1 minute into the MRI I thought I would lose my mind, so I pressed the panic button and they pulled me out.  The tech took some of the padding out from around my head after I promised not to move, he slid me back in and I survived the rest of the MRI.  Now I had to wait for the results.  The Neurologist called me on November 21^st, the day before Thanksgiving to tell me the results of the MRI.  The call came during lunch; I was driving back to the office when he called my cell.  He told me what he found, I was like “Chiari what?” what the hell is that.  He told me what it was and referred me to a Neurosurgeon.  I couldn’t wait to get back to my office to find out more about it, that’s when I found www.conquerchiari.org.  I was actually happy when the doctor told me what it was, I finally had a diagnosis.  Having Chiari Malformation meant I wasn’t crazy, it wasn’t MS and it wasn’t a tumor, I had lived in fear since September that I had MS or a tumor.  I was excited to have an answer to the problem, but when I talked to my wife Joyce about it she wasn’t as enthusiastic and she went into instant worry mode instead. 

Time to give another doctor the stink eye.  This time it was my wife’s turn.  We had an appointment with the Neurosurgeon on December 11^th, when he first came in and asked why I was there I told him I was referred because of Chiari Malformation.  His reaction was along the lines of “I don’t think so”, I was a bit put off by the way he said it, and I knew without looking at her that Joyce was about to show him why she is close to becoming a black belt in Tae Kwon Do.  When I worked up the nerve to look in her direction she was giving him “The Look”, and she was turning red…bad news for you doc.  Thankfully we got past that, he later explained that often times the radiologist says the problem is X and it turns out to be Y so I guess he was being cautious prior to his final diagnosis. He turned out to be very likeable and his approach put us both at ease about the whole prospect of surgery.  Ok, maybe not both of us, I’m excited and ready to go, Joyce not so much.

So there you have it, the story of how I got to the point of deciding to have brain surgery.  Stay tuned…The next posts will be about whatever I feel like blabbing about as it relates to life with Chiari Malformation or just life in general.  Thanks for taking the ride with me!