Rare Disease Report

Syringomyelia: a Complex Disease Rarely Recognized in Medicine

JANUARY 14, 2017
Beth Nguyen, RN
Syringomyelia is a disease that is identified when a syrinx also termed cyst forms inside the spinal cord. The syrinx can vary in size, length, and location. Syringomyelia is commonly diagnosed when a patient goes in for an MRI of the brain and spine. 
What can cause Syringomyelia? Trauma, infection such as meningitis, hemorrhage, Chiari I malformation, myelomeningocele, spina bifida, tethered cord, and spinal tumors can cause cysts to form inside the spinal cord. It has been reported in more than one sibling in families as well. 
 Syringomyelia can cause moderate to severe pain; multiple symptoms can present as the spinal cord and spinal nerves become damaged. When an individual with Syringomyelia presents for medical care with a long list of symptoms it can be overwhelming to any medical professional with a busy practice. However, once more common everyday causes are ruled out first,  it is important to consider Syringomyelia as a potential source of symptoms when you consider the spinal cord and the spinal nerve damage that can occur from this disease.
 Progression of Syringomyelia can result in a variety of complications as well as irreversible damage. Syringomyelia can even lead to paralysis so it should not be dismissed or taken lightly. Deterioration from Syringomyelia can be either slow or rapid.  An individual may experience an extended period of no change in symptoms or no reported symptoms. 
In some cases nerve damage can be reversible if caught early. Surgery may be recommended by the neurosurgeon to treat Syringomyelia. Syringomyelia can be complex and by examining the spinal nerves and how they connect with multiple systems of the body there can be a greater understanding as to how symptoms can occur.  Due to the complexity of symptoms more than one medical discipline may need to be involved in the care of the patient. The care team should be led by primary care and a neurosurgeon to have the best outcome. Primary care is a vital part of the treatment team to aid in coordination of specialist care, monitoring of ongoing symptoms, and to prevent the patient from falling through the cracks after visits with multiple disciplines. 
Ongoing updated continuous education in medicine is crucial with regard to Syringomyelia! Early identification of the presence of Syringomyelia, implementation of a multidisciplinary care plan with prompt referral to neurosurgery to evaluate the individual with Syringomyelia can prevent further permanent damage and better manage the overall disease. Please feel free to review and share our spinal nerves presentation. This serves as a valuable educational tool.  Our Syringomyelia and Chiari Advocacy Models clearly define the importance of involving multiple disciplines in the ongoing care of the individual.   
 Medical professionals from more than one discipline have an ethical responsibility to take an active position in the ongoing management of Syringomyelia and Chiari Malformation. The role of the healthcare professional is very important until the day there is a cure to prevent unnecessary complications. Prompt identification, rapid referral, and excellent ongoing treatment are all crucial components needed for proper care. Syringomyelia is a complex disease that often requires a team approach to provide the patient a meaningful quality of life.
Beth Nguyen RN, CEO
Worldwide Syringomyelia & Chiari Task Force

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