Eddie is too, soon to be 3 and was diagnosed with chiari at 11 months old. honestly, my husband and I know almost nothing except for what the surgeon has told us. almost 1 year ago, February of 2012, at 21 month old Eddie received his first decompression surgery. for the last 3 weeks at ease pain seems to be getting severe, he is complaining of middle back, back of the neck, and jaw pain. Eddie is involved in speech therapy, and has some speech delays, so communication and understanding what he’s feeling is difficult. he is extremely pain tolerant, and lately sometimes the pain is so severe that he is literally scratched the back of his neck bloody. he seems to of lost his strength s on the left side of his body, doesn’t want to eat, is struggling with his fine motor skills, is having a hard time sleeping, and I can’t remember the last 24 hours that we’ve had pain free.
he had an MRI, and his surgeon’s office called us and said they think he needs another surgery. his surgeon said he sees flow in the area but it looks crowded.
my husband and I, thought that after his first surgery he would be pain free. non symptomatic and not need another surgery until later in life.
we would love any insight wisdom or advice.
thanks
please excuse all the spelling and grammar errors, I am posting of my phone, and failed to proof read that. Sorry, I hope you can make sence of it. 