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My 11 y/o adopted son regularly feels a “pop” in his head (his words) followed by pain. He has been dx’ed with EDS, although we are awaiting typing. He also has food intolerances (fructose, gluten, peanuts, soy) and reacts to strong smells and light. Anyone have insight or advice about the “pop”/pain in his head?
possible chiari or craniocervical instablity issues-in my case , the sliping cci issue causes an audible to me ( and others at times )pop -snap sound /sensation-followed by neuropathic pain spreading down my head base /neck area to the shoulders . My intercranial presure spikes at the same pain wham moment from both perception /and other cranial nerves act up in response too-tininitus, shooting pain in the trigeminal pattern -eye control issues ect , until that sensation of increased presure resolves some .( I am now aware , wearing the hard collar and trying to avoid the movement triggers involved ) .
I do have a decompressed chiari-“failed ” due to eds impacts, and done as surgery long before ties were known . the cci issue is what is said to be causing this sound /sensation pattern .
If this starts to add up toward possible causes for him – PLEASE get him to a chiari /cci aware evaluation within EDS – not a great local neurosurgeons attention –it’s the biggest factor in those who get better with possible surgery’s – or those who get worse when surgery is indicated .
just my first thoughts as a newbie here
Sarah in Paradise
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