Less than 2 months ago, our 7 year old, healthy, happy daughter was diagnosed with 20 degree scholiosis. A follow up MRI to rule out idiopathic scoliosis came back a couple days ago with Chiari and the cyst CM1. Shock. I remember being so shocked that I didn't hear much of what the PA at Shriner's told me because of being in so much shock at the discovery. I remember being a little annoyed that she seemed to know more information about exactly what she was saying in medical terminology I have never hear before... but I got the gyst of it. I remember interupting her and thinking, JUST TELL ME, but the main thing, looking back now, was I remembered I was stuttering asking questions. I never stuttered in my whole life until that phone call. We see the NS on the 11th but the PA told me she has the criteria and sizage for decompression surgery. Why can't I comprehend all of this information in one phone call???? It has taken days for me and my husband to understand what we know now by computer research, calling back Shriner's with questions, following up with her PCP and advance calling to the NS office to ensure he is a pediatric surgeon and.... that he has decompressed other kids her age recently and over the past year. We have made advance appointments for second and third opinions and without boring you with the details, have made many other calls to other people with Chiari information. At this date, we have not discussed this with our daughter, because we want to wait until the last possible minute to get the full details before we inform her. We also have an 8 year old daughter who we have decided to get an MRI to rule out CM1 in her too. If you read our story,, would you please stop for a moment and offer a small prayer? Surgery is scary for anyone, but brain surgery on a 7 year old is mind numbing. We will update in hopes to enlighten others in our situation. God bless all who read this and are affected with this defect.
Hi and welcome to the Chiari forum.
I am so sorry u r having to deal with a child and this condition...I am not sure how I would have handled that, but I can tell u from my own surgical experience at that age...make sure u explain it all to her soon...I was not told until I was going to have my other tonsils removed....I am and always was a mouth breather so they felt removing my tonsils and adenoids, Knowing now that breathing issues r common with chiarians I now understand my breathing issues...please have ur child checked for sleep apnea as well.
Chiari can run in families...so do look at ur family history...and I pray ur other child does not also have this.
We have a thread for surgery dates...please post ur DD's date on there so we can post a prayer thread : )
"selma"