9 Year Diagnosed with Chiari Type 1 (6mm) - I'm scared

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At 2yrs old my son was diagnosed with several development delays and concerns, from sensory, occupational, physical, speech, behavioral and social. He's been receiving services and progressing well.

Over the last year he started complaining of headaches and dizziness. One doctor told me he needed more salt in his diet and not to worry. His primary told me since I had concerns related to attention I should take him to a neurologist. Although very dismissive of my concerns, she sent him for an MRI which resulted in his Chiari diagnosis. She called me and indicated we would treat this conservatively. BUT Many evaluations over the years have indicated very low working memory (6th percentile) and along with the other concerns above, I can't help but think this is all related. Had she spent any time listening to me when I came in, she would have the full picture.

Anyway, I made an appointment at NYU and Mass General for a second opinion. I'm scared. What is the likelihood these are symptoms? How likely will it get worse? Could surgery fix all of his other concerns?

ANY support, comments, suggestions are welcome.

Thank you.

Scared Mom, Kris

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  • Posted

    Meant to say 9 year old Son.
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  • Posted

    Hi Kdilo, sorry to hear about your news, mostly when it is qbout your son, but its all not bad, at last you knew it whioe he is young, I knew some people wqho had experiencs when their child was diagnosed as young as yours and they have surgery they can have their full potential of life, yes one of the symptom of chiari is effecting the concentration and memory, is better to get the NS to put it on medical statement to speak or show it to the teacher..or organisation concern..I suffered chiari, but I am over 40 they said I always had it since I was young, only just bothered me that I have to resign from work, but It trouble me so much, do not worry, your son can be treated as early as you can, get several opinion, try to choose the best chiari specialist and make sure you read lot about it so yourself understand about the condition because your child still young it will be you who need to speak to the health care professional on his behalf, when I spoke to my NS 98% of patients that he operated are succesfull, with people who are successful they dont go to this wesite as they are busy with their own life..so be positive, but dont forget to pray.thanks god that you know earlierhe does not need to suffer that long,..so GOD LUCK...
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