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Should we Let our Chiari Kids Play?

For a long time, when children were diagnosed with Chiari malformation type I (CMI), they were automatically pulled from all sports and rough play in an effort to protect them from injury. It was assumed that their neurological condition, whether symptomatic or not, was precarious enough that the risk was too great.

As a result, many children lost a great part of their childhood. The tide may be turning on this view, however. According to Dr. Richard Anderson from the Pediatric Neurosurgery Center, “current research does not fully support this ban on play and the benefits of play may warrant loosening of current guidelines.”

Play is an integral part of being a child. “It is important, not only to their physical health, but also to their social and emotional development,” says Dr. Anderson.

“The concern,” says Anderson, “is that when a child has CMI, there may be a change in the location of cerebral spinal fluid and its ability to buffer the brain and spine in high-velocity impact.” With CMI, the cerebellar tonsils (part of the brain) extend at least five millimeters below the base of the skull into the spinal canal. What this means is that there may be less room in the spinal canal and Dr. Anderson says, “The hypothesis is that this may increase the risk of brain and spinal cord injury.”

A handful of case studies in the 1980’s and 1990’s supported this concern and by-and-large pediatric neurosurgeons took the “better to be safe than sorry” approach. In particular, when the child was symptomatic they highly recommended avoidance of sports and rough play.

In 2000, however, a survey of members of the joint Pediatric Section of the American Association of Neurological Surgeons and the Congress of Neurological Surgeons showed that pediatric neurosurgeons recommended no activity restrictions for asymptomatic children with Chiari I 64% of the time. When images of the spinal cord showed pockets of fluid build-up, called syringomyelia (“syrinx”) in addition to the Chiari I, that figure dropped down to 58%. In other words, despite the presence of Chiari I malformation and a syrinx, if the child was asymptomatic, more than half of pediatric neurosurgeons did not recommend activity restrictions.

Dr. Richard Anderson says that in asymptomatic children, activity restriction may not be warranted, “The research is sporadic and often based on anecdotal reports. The quality of the evidence is not good enough to make official recommendations.” In particular he says, “ to date, the research has yet to show that CMI definitively increases the risk of spinal cord injury. It is difficult to deny a child the opportunity to play sports their entire life by arguing an increased risk when little to no data exist.”

Although definitive studies are lacking, the more recent feeling among many researchers is that there is simply not enough evidence to definitively suggest prophylactic surgery or avoidance of contact sports in patients with asymptomatic CMI.

What the researchers and Dr. Anderson seem to agree on is that when CMI has advanced to the point of being symptomatic, children should not be allowed to engage in rough play or contact/collision sports. The risk is too great. The question still remains however, whether asymptomatic children with or without a syrinx are more at risk for spinal cord or brain injury. Until that has been proven one way or another, restrictions should be implemented with an eye towards safety but without ignoring the importance of play.

patient journey

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