Today, I help moderate a wonderful support-group's message board online. I participated for a couple of years at another message board. Both of these boards are for people with Arnold Chiari Malformation, Syringomyelia and related disorders.
I have many friends now all over the country who have these conditions. I am a patient of The Chiari Institute in Great Neck, NY, over 3000 miles away. Yet, I do not have Chiari. So, what's Chiari got to do with me?
After I broke my neck in April, 2007, I went on full-time disability with work-comp for seven months before I went back to work training horses.
My neurosurgeon who took care of me immediately post-injury later counselled me that I could never jump horses again. He said, "It's too hard on the spine." I remember that day in his office, him saying, "I doubt you will ever ride professionally again." I looked him straight in the eye and said, "I bet I do!" I thought that he didn't know me, who I was, my will and drive to work and to keep on keeping on. I'd prove HIM wrong!
How little I understood then. In retrospect now, it's turned out that he was 100% correct.
When I went back to riding horses, I noticed I started getting much worse. Even though I was taking it easy and not jumping, even though I was so happy to be back training horses, I still went into a state of decline which continues to this day, three years later. None of my doctors seemed to understand why I wasn't getting better. My own doctor managing my care often told me, "Your case puzzles me." It seemed to puzzle any doctor I was sent to. I was told that my C1 fracture had healed fine and "straight."
Suffering with major fatigue and weakness, numbness and tingling in my extremities and other assorted symptoms, I asked to see a neurologist. I didn't understand much about anything really, but I knew my situation was neurological. The neurologist who saw me did tell me first that my brain injury was much worse than anyone understood because the doctors had been dwelling on the severity of the Jefferson fracture.
After seeing me three times, the neurologist surprised me at the fourth visit when he said, "I won't see you again until you are evaluated by a neuropsychologist. This could all be emotional!" I cried so hard when he said that. I KNEW my problems were not due to emotions or depression. I knew they had a physiological cause. But...what?
Someone, a professional, told me off the record that he thought I had MS. I started researching MS on the internet and joined a support-group's message board. Many, if not most, of the symptoms for MS seemed to apply to my situation, but something did not ring quite true.
One day, a woman came onto the MS board and said that her daughter had been diagnosed with Chiari Malformation and that she had been misdiagnosed for years with MS. The author wrote that she'd read that many people who are diagnosed with MS or fibromyalgia or chronic fatigue syndrome actually do not have those conditions, but instead, they have Arnold Chiari Malformation (ACM).
In the background of all of this, I was still hearing from various doctors that they did not know what was wrong with me. All I could think was maybe I had something congenital going on that the injury exacerbated. I began to research ACM and was surprised to find so much in common symptom-wise with these patients. I began to study my own MRIs and compare them to the images I found online. To me, it looked possible that I might in fact have something called Chiari Zero. [I will create another post that will more explain ACM and Chiari Zero, rather than going into that here.]
Looking back on all of this, I can see God's Hand in using this condition to bring me to the doctor who would understand what was going on with me, and who knows better than anyone in the world how to help me. But of course, in the middle of it all, taking those little tentative steps, I couldn't know the future, I could only muddle along in uncertainty as I self-advocated, as I researched and printed out medical articles. I joined a Chiari support-group online, where I was
welcomed and mentored.
Someone from that community suggested I seek out evaluation from an ACM expert in California. Seeing this expert became my goal, my dream, my ticket (I believed) to true diagnosis and the end to anyone telling me ever again that my symptoms were due to emotions.
I bravely took my MRIs with me to my primary injury doctor and I launched into my hypothesis that I might in fact have ACM. I give him credit: he respected me as a researcher. He looked at the MRI's that I clipped up onto his light box. I showed him the printed out MRIs of patients with ACM0 and together, we compared them my images.
There just might be something to this, we both thought. I asked to be sent to the expert to be evaluated.
Kudos to my primary, he requested the evaluation, and eventually, I made the trip. However, I ended up leaving that doctor's office crying, having once again been told by a doctor that he did not know what was wrong with me. I also heard that I did not have Chiari.
This neurosurgeon did look at my Jefferson Fracture on the CT scans taken the day of my injury, and shaking his head, stated, "Not too many people walk away from that one!" But he also told me that I should not trust anyone who might say they knew what was wrong with me, and I was also lectured: "You are lucky to be alive. Get off the internet and get on with your life." I was given isometric neck exercises to strengthen my neck muscles, told to stop wearing my soft-foam collar, and sent home.
It was a tough drive home. My friend Dolores, who drove me there, let me cry and helped me through the thought process to find my way through so vast a disappointment. I felt rejected, I felt I had been ill-treated. And I had no idea where next to go.
That visit to the ACM expert took place in February, 2006. I continued on the ACM message board because I just did not have any peers who had suffered a Jefferson Fracture with whom to communicate. These good folks allowed me to stay in their group and I continued to learn about Chiari. I still thought that I might have Chiari Zero, and if I could only get to The Chiari Institute that I read about on the board, I somehow knew that I would have the answers, whatever those answers might be.
I learned that people with similar conditions are so helpful, so big-hearted. Women I never have met before but who I grew to trust through emails networked to get me in touch with the specialist at TCI via email. I was shocked that Dr. Bolognese would email me when I was not even his patient, and when he seemed like such a superstar to me. I told him of my symptoms and my story, and he suggested that I get an "at-home traction unit" and follow his instructions with its use.
I first asked my primary if this was okay, and he authorized the use of the unit. Following Dr. B's instructions, I started the traction, and Dr. B told me soon that I could stop, that the traction had served its purpose, and that he felt I have craniocervical instabililty.
I would guess now that this all happened toward the end of the summer of 2006. After going through the diagnostic traction, I wanted more than ever to go TCI and see Dr. Bolognese. But...how? My injured brain could not wrap around how I could get there. I wasn't getting authorization from work comp to go there. In fact, my doctor told me that work comp never sent anyone out of state for treatment or evaluation. When he said that, I thought of the power of my God, and blurted out, "That's okay. I don't mind being the first one!"
But that didn't seem to be happening, so in January of 2007, I stepped out in faith and went on my own. Flying to NY was not easy for me. I was hurting so badly. My brain was so confused and tired. A Chiari friend I met online met me there and acted as my companion for the entire trip. She was a God-send and also a TCI patient.
Finally, there I was in his office, meeting Dr. Bolognese! He wasted no time in pointing right to my new CT scan to show me that my C1 is still broken. It never fused on its own. He used the term: "non-union" fracture.
When he said that I was a surgical candidate and he would be my surgeon, I believe my heart had wings. I felt like a schoolgirl along the wall at a high-school dance, being asked to waltz for the first time by the most popular boy in the class. It seemed like a knight in the proverbial shining armor was offering to help me...was honoring me...was SEEING me finally and seeing clearly what was wrong. Was seeing what was so evident and easy to see, IF someone just would look.
Dr. B said I do not have Chiari. But he said my skull has rotated backwards to where it is resting on the posterior part of my C1, where there should be the space of (and he held up his hand to demonstrate...) "a pinky finger" between the two. He showed this to me on the incredible 3D CTs that are done for TCI at Manhasset Diagnostics. I do have low-lying tonsils, but hopefully, once my head and neck are extracted upwards, all the angles and measurements within my brain will come back more into normal alignment.
I now can imagine what Columbus felt like when he spotted land in the West Indies. What Balboa must have experienced when he first sighted the Pacific Ocean. I had reached my Promised Land. After years of suffering and feeling disrespected and misunderstood, I was now being told and shown that all of my pains and neuropathy had a reason, a valid reason to exist.