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Margaret’s Story

I was born with a rare metabolic bone disease called Craniometaphyseal Dysplasia (CMD). This disease causes the bones of the skull to grow thicker than normal. When I was born, the bony overgrowth created compression on the nerves for hearing, causing hearing loss for which I wear hearing aids in both ears. The excess bone also compressed the nerve that controls the muscles of the left side of my face, causing Bell’s palsy (paralysis) on this side of my face. My bone disease is so rare that very little is known about it or how it progresses. However, this disease is progressive, meaning it continues to lay down bone even after it is supposed to.

My problems began when I was 11. MRI scans revealed I had developed hydrocephalus and Chiari I Malformation, which would require immediate surgery. On January 2 of 1998, I had a posterior fossa decompression. My problems did not go away, and in December of 1999, I had a ventricular shunt placed. Despite the headaches, I was managing to lead a fairly normal teenage life, playing travel softball, making the school honor roll, etc.

During my sophomore year of high school, a lumbar shunt and, later, a subarachnoid shunt were surgically placed. At age 17, in the midst of my operations, an MRI revealed that I had developed Syringomyelia, and it
is THIS condition that has had devastating effects on my life, taking so much away from me and turning my life upside down.  I began with a syrinx near the top of my spinal cord, but each time the doctors went in to drain the syrinx and remove the pressure on the nerves at that level, another syrinx would form below it and the doctors would go in again. It went on like this, until the syrinx had made its way down the spinal cord, permanently damaging nerves at virtually every level. In 2005, I was hospitalized twice at RIC, among the various surgeries.

After all the surgeries were done, which numbered over 30 (we lost count!) and it looked like a syrinx was under control, I suffered from chronic pain in my upper back between the shoulder blades. I have also lost virtually all sensation from my neck down i.e. hot/cold , texture, and pain.

In the fall of 2008, while attending a group therapy class at RIC for young adults with disabilities, I was introduced to the wealth of disability resources available at the University of Illinois at Urbana- Champaign. Not long after, I was accepted into the freshman class of 2009! I would live at the special dorm for students with disabilities, majoring in animal sciences ( I wanted to work with service animals). After my 1st semester, it was discovered that I had narcolepsy coupled with severe central sleep apnea in addition to the chronic pain. The situation got so bad that when I came home for spring break that year, I did not go back to finish out the semester. While I did return in the fall of what would have been my sophomore year, I was unable to finish out the year, due to chronic pain.

In the fall of 2011, I was a patient in RIC’s Center for Pain Management Chronic pain rehab program.

On June 18, 2013, I had surgery to replace my subarachnoid shunt after which I went straight into a two month stay at RIC until August 12.

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