Guest guest Posted June 8, 2000 Report Share Posted June 8, 2000 Hi Lory. Our daughter also started having symptoms since infancy. She had swallowing problems, choking/gagging, headaches (also held her head), abnormal UPWARD eye movement (was misdiagnosed with Brown Syndrome due to this), among many other symptoms. Her symptoms progressed over time and we only got a Chiari I diagnosis when she was almost 5 years old. Some of her symptoms would " flare " if she was ill, tired, upset and even embarrassed. Decompression surgery (at age 5-1/2 years) alleviated her many symptoms 1-1/2 years ago and she continues to do very well. You don't need any tonsillar herniation to be symptomatic - our daugher had NO herniation of the tonsils and was quite symptomatic. The problem lies with an underdeveloped occipital bone creating a smaller compartment (posterior fossa) and thus compression of CSF cisterns, thus restricting proper CSF flow. A smaller compartment often causes the cerebellum to be compressed and therefore the first thing to give are the tonsils and they will naturally be pushed downwards into the spinal canal. The usual procedure is to decompress the area, thus the decompression surgery. This usually involves a removal of bone, a laminectomy of the first cervical vertebrae (C1) and sometimes C2 as well and duraplasty. There are some variations on this - for example, some cauterize the tonsils, some remove a large amount of bone, some small. Urgency? Well, our daughter's constant choking/gagging, dysphasia (swallowing problems) and apnea/sleep apnea symptoms were reason enough as three neurosurgeons told us it was dangerous and risky. She also started to occasionally lose vision and even become color blind. These were reason enough to go ahead with it, even though she had other symptoms. I would recommend you see Chiari " experts " , get their opinions and judge for yourself about the gravity of your son's case. The fact with our daughter was that she was worsening with time - the symptoms were occurring more and new symptoms were growing with time too. Only you can tell your child's situation over time. She was decompressed by Dr Frim, U of Chicago - we live in Canada - Dr Milhorat (NY) was the only other doc who diagnosed her with Chiari I. Many others said no Chiari. Feel free to ask me anything you wish. Eurico Quote Link to comment Share on other sites More sharing options...
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