Chiari Is A Long Journey

Hi Everyone,

I have had a very long difficult Journey with CM1.


I became ill in 2001. Four years and 52 Specialists later I was sent to an incredible Neurosurgeon & was diagnosed with Bi Lateral Geniculate Neuralgia. I had MVD surgery on 12/4/2004. At my Post Op check up I told him my neck was hurting. I thought I had been working too much. He first ordered an xray .....just to make sure everything was ok. Then he ordered a C Spine MRI. The next day he called me while I was driving and asked me to pull over and told me I had a serious CM1 & needed to get back to Pittsburgh ASAP or I would become a quadriplegic. I didn't know what Chiari was or cared. All I heard was quadriplegic and thought of my young daughter. The next day I had Emergency CM Surgeries and a rebuilt C-Spine. My CSF Blockage was so severe it was pushing my Cervical vertebrae out of my spinal column.

I never knew anything could be so painful. My nerves were stretched for 16 hours. I will always be in constant pain because my nerves will never go back to normal length.

My life as I knew it forever changed. My pain is never below an 8 out a 1-10 with pain management.

Now I am a Rare Disorder Advocate and volunteer for Ben's on and several other discussion forums.

No one can understand a Rare Disorder unless they walk in our shoes.
TracyZ0401 TracyZ0401
41-45, F
Dec 7, 2012