Hi there, I am a "symptomatic"Chiari sufferer since 2005, took til end of 2007 to be diagnosed.. (gues i was "crazy" not to go ahead with those interferon injections "just in case" i was getting m.s.huh?...and they think WERE the crazy ones!!) anyhow...worst part is,
[More] my son was dx'd in 2009, had the decompression in 2010, and we are both now hanging in limbo with whats left...no neurologists that specialize in the condition , whether youve had the surgery or not, you still live with it to some degree, even post-op. anyhow just glad to have eyes and ears to vent to, and maybe offer some medical know-how from my 15 yrs experience in orthopedic surgery and physical health..not to mention my vast experiences living with it and have yet to find an adult Dr. who knows what they need to in order to help, and continuous "Blowing you offf" attitude...just when i think i might be getting somewhere..i see they dont DOCUMENT anything!! which doesnt help in following progress . Thank God we were at least able to find a great surgeon (pediatrics of course) for my son.. kids get blown off a lot less!! thank goodness!!! yet even tho he's had the surgery, he still has symptoms...just not as bad. here's to hoping that the future brings better for him just in case he does get more symptoms in the future!!! But i will tell you this...on a positive note...He is doing great with the pain from before the surgery subsiding, and the numbness and disabling bolt like pains he was getting are pretty much non-existent.!!! yay!! other side of the coin is...he started having seizures when chiari symptoms became evident, and they are still happening..and only during growth spurts. still waiting for a Dr to open his little box of thinking to address the correlation instead of passing it off .
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