My Battle with chiari malformation and syringomyelia
My name is Bonnie Cutsforth-Huber. Like most people, I wear many hats – I am a professional Classical singer, a professor, a wife, and a mother. But what most people do not realize is that I wear another hat that I did choose myself, but, nonetheless, it is mine. I am a Chiari Malformation and Syringomyelia survivor.
Since Chiari and Syringomyelia impacted my voice and my body in profound ways, and since many symptoms appeared in my voice first, I have made it my mission to raise awareness about these conditions, in hopes that I can help others to suffer less and to hope more. I have performed concerts and given lectures across the world with this goal in mind.
In a nutshell, Chiari Malformation is a condition where the cerebellum – the “grand central station” of the brain - is forced down into the spinal cord. This herniation not only disrupts the function of the cerebellum and cranial nerves, but interferes with the flow of cerebrospinal fluid between the brain and spinal cord. This disruption is very serious; cerebrospinal fluid not only protects the brain, but carries nutrients throughout the brain and spinal cord. When the brain herniation is severe, as mine was, the cranial nerves that service the respiratory system, tongue, jaw, soft palate, and laryngeal muscles are impaired. In fact, laryngeal paralysis can result from Chiari Malformation.
Another condition known as Syringomyelia is often found in people like me who suffer from Chiari Malformation. Since Chiari prevents cerebral-spinal fluid from circulating freely between the brain and spinal cord, fluid becomes trapped within the spinal cord and forms a cavity known as a syrinx. As the syrinx grows, it damages the nerves attached to the spinal cord, which can lead to paralysis and/or death.
Like many people who suffer from Chiari, it took many years for my condition to be diagnosed; in fact, by the time I was diagnosed, my life was in peril. My brain herniation was severe enough that both my cerebellum and cranial nerves were impaired, and my syrinx stretched from the base of my brain to the top of my lower back.
My journey to reclaim my life has been full of twists and turns. I have endured two brain surgeries and several other surgeries on my spine. I have endured countless hours of physical therapy. I have had to rebuild my voice from square one. But despite all of the obstacles, I have won back my life, I have won back my voice, and the fact that I am on this earth doing what I was born to do - to sing - is a testament to the fact that the power of the human spirit in all of us should never be underestimated.
I thank you for taking the time to hear this small part of my story. I hope that it encourages you to learn more about Chiari Malformation and Syringomyelia, and also that it inspires you to overcome the obstacles in your life, whatever they may be. So, many thanks to you, and I hope to see you at one of my performances very soon.