Welcome to a new addition to my blog which will be published every Wednesday. I'm calling it Chronic Chiari and it's place where I can to talk in depth about the condition that I am blessed with. For those that may not know I suffer from a chronic neurological condition called Arnold Chiari Malformation, type one. It's a big name for a little problem that causes a lot of symptoms. There is no easy way to explain Chiari; but, I will do my best. In layman's terms, Chiari is a structural abnormality where the cerebellum (those two little lobes at the back base of your brain, located nearest your brain stem) are protruding out of the base of the skull and down into the top of the spinal canal. Per Radiopaedia, "Chiari 1 malformation is characterised by inferior herniation of the cerebellar tonsils through the foramen magnum, due essentially to a mismatch between size and content of the posterior fossa." The National Institute of Neurological Disorders and Stroke (NINDS) defines Chiari malformations (CMs) as "structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation. CMs may develop when the bony space is smaller than normal, causing the cerebellum and brain stem to be pushed downward into the foramen magnum and into the upper spinal canal. The resulting pressure on the cerebellum and brain stem may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)— the clear liquid that surrounds and cushions the brain and spinal cord—to and from the brain."
The biggest problem in living with Chiari is the symptoms. According to the Mayfield Clinic for the brain and spine, "The symptoms are complex, progressing over time. Because of this complexity, the condition is often misdiagnosed. At times, Chiari I malformation is mistaken for fibromyalgia, migraine headaches, sinus disease, multiple sclerosis, and other complex disorders of the nervous system. Some patients have waited for years before an accurate diagnosis is made. Accurate diagnosis and plan of treatment is important before the patient’s nervous system suffers permanent injury." The Chiari Institute goes on to say "Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet. Because of this complex symptomatology, patients with CM1 are frequently misdiagnosed." The National Fibromyalgia Research Association (NFRA) has and excellent chart comparing Fibromyalgia, Chiari Malformation and a compressed cervical cord.
Chiari is not curable since it is a structural abnormality. Patients with Chiari strive for symptom management which may include decompression surgery. The Columbia University Medical Center Neurology Department explains decompression surgery as thus, "The basic operation is one of uncrowding the area at the base of the cerebellum where it is pushing against the brainstem and spinal cord. This is done by removing a small portion of bone at the base of the skull deep to the neck muscles as well as often removing a part of the back of the first and occasionally additional spinal column segments." Surgery is the biggest decision that each Chiari patient must face. Whether or not one opts for surgery is a personal decision and is based on many different factors.
Having neurosugery was the right choice for me as I had no room for the cerebospinal fluid to flow normally. I was decompressed and became an official "Zipperhead" in November 2005. Even though, my surgery brought an onslaught of new conditions for me, I do not regret it. I have learned so much from the experiences I have been through. Surgery, rehabilitation, therapy (both physical and mental), medical procedures, tests, medications, treatments and so on are all words that I am comfortable with now. I was forced to become my own 'Personal Health Specialist' and to learn what I could about my own body since it is the only place I have to live for the rest of my life.
My diagnosis of Chiari has irrevocably changed my life. In one moment, I was thrilled to know that the symptoms I have always suffered from were valid. I was hugely relieved to know that there was a real reason for the wide range of difficulties I have endured. In the next moment, I was terrified for my future and what such a diagnosis meant for me. That was over 6 years ago, today I am living a happy, fulfilled life; although, I still have more than my fair share of challenges. I still see Chiari as a blessing rather than a curse. Why? It set me on a journey to learn the meaning of life, of MY life. Now, I am going to share that journey with you.
Chronic Chiari will be published every Wednesday. I will discuss the different aspects of living with chronic illness such as medication, symptoms, treatments, tests, etc. I will also be posting short stories from my memoirs "My Journey with Chiari" on my blog as well. Please like my Facebook page to be notified of all future blog posts. You can also follow me on Twitter, Pinterest, and Instagram. If you are someone or know someone with Chiari please click the Chiari Malformation tab at the top of my blog for further information and resources.