2008 was a banner year for me. But not for the reasons you would imagine. I’d moved to Houston, was a small business owner and a stay at home mom to two bouncy toddlers. My life was full and robust. It was a whirling dervish of days; each one feverishly melding into the next. Life pressing full steam ahead, until it wasn’t. At some point in April I started to notice a dull pain across the top of my head. I dismissed it as being tired. At some point in May I coupled the dull pain with inexplicably falling. My legs would just give out at moments. And although I was a lifelong dancer, I dismissed it as clumsiness. At some point in June I increased my ibuprofen intake to once every four hours, without fail. At this point I wasn't allowed to dismiss it. My husband, noticing that at this point something was definitely wrong, insisted on my visit to the doctor. My initial visit to our family doctor gave way to a visit to a neurologist. After going for a series of MRIs and other brain scans, I walked into the follow-up appointment completely confident; dismissive. My self diagnosis of migraines gave way to the reality of Chiari Malformation. My desire for a quick resolution in medication gave way to the reality of an appointment with a pediatric neurosurgeon. My simple fifteen minute consult gave way to a complicated life shift. I could no longer be dismissive. My brain malformation wouldn't allow it.
Scientific Stuff
Chiari Malformation is by definition “a structural defect in the base of the skull and the cerebellum, the part of the brain that controls balance,” according to the National Institute of Neurological Disorders and Strokes. Chiari Malformations develop when a part of the skull is smaller than normal or misshapen, which forces the cerebellum to be pushed down into the spinal canal.
There are three types of Chiari Malformations.
Type I - the most common, sometimes showing little to no symptoms.
Type II - more severe than the former. In this type there is brain stem and cerebellum protrusion.The name Arnold Chiari is specific to type two as it is named after the pioneer doctors who discovered it. Surgery is usually required to treat it.
Type III - rare and the most serious form. It is detected in infancy and can cause debilitatiing and life-threatening complications. Babies born with this type can suffer from all the type II symptoms, plus additional mental and physical delays, and seizures.
Symptoms on any given day will vary and come on at will. Symptoms that are present are dependent upon the compression of the tissue and the nerves.
They include but are not limited to
• neck pain
• hearing or balance problems
• muscle weakness or numbness
• dizziness
• difficulty swallowing or speaking
• vomiting
• ringing or buzzing in the ears (tinnitus)
• curvature of the spine (scoliosis)
• insomnia
• depression
• problems with hand coordination and fine motor skills.
The Day After
My unfortunate diagnosis was delivered on the eve of my daughter’s second birthday. I am type II.
I hosted a grand birthday fete in her honor. I would go on to meet with the neurosurgeon a few days later to discuss my impending surgery. Getting “zippered” is a procedure in which the brain is repositioned in efforts for
decompression. It is followed by an extensive recovery period. It was then that I began to grieve the life I knew before. But only for a moment. In the eleventh hour my spirit said no. I’d go on to refuse the surgery. It was a difficult but necessary decision for me and my family at the time. Since then I have experienced an awakening. I have challenged all things that my diagnosis had previously prohibited. I began to take charge over the elements of my life that I could control. I examined my diet, reestablishing a better relationship with food as it pertains to my health. I dedicate six days a week to working out, not because I have to, but because I can (and honestly enjoy). They byproduct is a more exuberant existence that I had lost yet never noticed before the diagnosis. In many ways it has been one of the best things to ever happen in my life. My days aren't always physically easy, I live with a headache, and often times suffer from a number of the previously mentioned symptoms. Yet, if you were to encounter me, I could all but guarantee you would never notice. With my invisible disability, I have become more mindful of my health and no longer dismissive of current state. I’m not certain if my future will not eventually include surgery. But as for now, I am resolved in waking everyday determined to make each of them a masterpiece in my own way. There is never a day that I question or regret my decisions in regards to my family. I am a walking and breathing manifestation of God’s grace.
As a society we’ve created an ongoing narrative around what people are supposed to look like when they are disabled. There are some that look like me, strong, healthy, steadfast and mostly joyful. Yet, what lies beneath are warriors, silently fighting for the semblance of a normal existence.
For more information on Arnold Chiari Malformation please visit www.conquerchiari.org