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03-02-2012, 11:04 AM | #1 | ||
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My 4 year old son has been diagnosed with Chiari 1 he has a 20mm protrusion-
he does not have a syrnix- his symptoms are- mild speech delay moderate fine motor delay gait is a little off balance has always been a issue although not a major issue sometimes he has sleeping issues- like he doesn't sleep well he has only had 1 headache he does yawn a lot they did find that his spinal fluid was obstructed and there is pressure on the brainstem I took him to a top peds NS at Cornell I really liked him and he is very fimilair with Chiari- he suggested surgery due to the fact my son is symptomatic period. he said we should do the dura patch- any words of wisdom or advice out there? should we get him the surgery?He is such a bright happy little boy his symptoms seem mild to me..? Help |
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03-02-2012, 02:52 PM | #2 | |||
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with a 20mm protrusion yes most definatly . He is so young now he will bounce back quickly ...
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03-12-2012, 03:44 AM | #3 | ||
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Have they checked him for EDS Ehlers Danlos Syndrome? or (TC) tethered cord? Also EDS can cause CCI (cranio-cervical instability) which can cause a lot of headaches, neurological issues etc. Does he have hydrocephalus even a minute bit has just been discovered in children with EDS. Google prettyill website she Dr. Driscoll discusses it in one of her videos. It is important to find out if he does have EDS because that changes the way they do surgery a bit. Google EDNF there are several different types and no your skin does not have to be stretchy so don't let the say that even if they think they know what EDS is. Please feel free to ask me anything. Have you been on the FB support groups or yahoo I know there are ones for parents facing these same issues.
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