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For me it started five years ago.  I did not have a gradual onset of symptoms.  Over the years that predate the real onset I had "vague" symptoms.  I had shoulder aches, vertigo, rapid heartbeat but a normal EKG.  The symptoms were sporadic and no doctor ever found anything wrong with me.  Then the pain started, no holds barred pain.  

 

For me, it was like flipping a switch.  I was relatively fine one minute, I was standing in my kitchen, I turned and my life has never been the same.  The searing pain stole my breath and I literally could not move more than about two inches at a time.  Somehow, I stupidly drove myself to urgent care.  They gave me an x-ray, a shot, called someone to drive me home and referred me to a chiropractor.  

 

Two weeks, I could hardly move.  Every turn, every step, even sleeping was impossible.  I met with a chiropractor who had a very fancy machine.  As he used it to scan down my back it showed muscle tension in my neck and shoulders, and my lower back.  He assured me that chiropractic care was the magic bullet that would fix me right up.  I went to the chiropractor three times a week for about three months.  Then, one evening I stopped by the office on the way home, and the Chiropractor wanted to try a new adjustment.  He had me grab something that looked like handlebars on the top of the table.  He then grabbed my ankles and pulled.  Every bone in my spine made a very loud cracking sound and I immediately had a burning pain at the base of my skull.  The Chiropractor was busy congratulating himself on what a "great" adjustment he had just made, he failed to notice that I had tears streaming down my face.  I had never felt anything like what happened that night.  And this pain has never gone away.  

 

At this point, I decided that I needed to seek alternate treatment to chiropractic care since that was certainly making things worse.  I had just accepted a promotion at work and was moving for the promotion from California to New York.  When I got to NY I started looking for answers in ernest.  First doctor I went to was absolutely shocked that I had never been given an MRI in California.  My spine was MRI'd.  I read the report.  It was like reading Greek.  I cannot begin to remember the whole list of things that were wrong with my spine.  I now understand what that MRI really showed.  BUT, what my doctor focused in on was 2 herniated discs at L4/L5/S1, and the doctor referred me to a neurosurgeon.  This was the time that I still trusted doctors.  I was told the discs were not herniated enough to require surgery, that I just needed physical therapy.  So, I began PT three times a week.

 

The pain was intensifying back to it's original level.  PT had no effect at all.  I went back to the neurosurgeon.  He referred me to a pin management doctor.  I began having a rigorous pain management injections.  They, combined with all the medications that I was on were causing irregular bleeding.  I was having what I thought was a monthly cycle every week.  The bleeding never stopped.  

 

During this time, I was still searching for answers.  I saw countless doctors.  I waited 2 months to see the #1 rated neurologist in NY.  Two months of waiting, he was in the room with me for 20 seconds before he reached for his prescription pad.  I was so angry I dumped my purse on the table and yelled that I didn't want one more pill to take, I wanted an answer.  He then gave me a half grin and said, "My answer, is that you need to spend more time on the golf course".   There was another neurologist that ordered a MAMMOGRAM, for me.  A MAMMOGRAM, I had a burning headache and she ordered my breasts examined.  This is only two examples of the many doctors that I saw.  Each seemed to be worse than the other.

 

After the 6th round of pain management shots did not work, my pain management specialist ordered a new MRI.  He asked me to bring the films directly back to him.  He took one look at them and told me that I had a Chiari 1 Malformation and that he did not believe he could help me with pain management injections and referred me back to the original neurosurgeon that had referred me to the pain management doctor.  

 

I will never forget that appointment.  This doctor looked me in the eye and told me that there was nothing that he could or would do for Chiari.  That there were a bunch of doctors that were more aggressive about treating CM, but that there was nothing he would do for me.  He was looking at me like I was a complete hypochondriac.  He actually just got up and left the room with no further information.