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Chiari Malformation Community
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Chiari.. but Managing my pain at 19??

Hello everyone

Ok well a little about me. I'm a 19 female college student just diagnosed with Chiari type 1. 11-12mm with tons of symptoms. They started about a year ago but were thought to be related to my previous 4 concussions. Headaches are my top symptom but if it doesnt feel like a normal head ache. No doctors have ever understood this but its localized pain in back right region of my head. It hurts if i move my neck wrong and can get really bad very quickly. ive had two MRIs both confirming i have chiari. i had a flow test down concerning my CSF but it came back normal. My pediatric neurosurgeon told me he couldnt do anything for me and told me to go to a neurologist and find ways to manage my pain. I'm very discouraging that i have to start magaging my pain at age 19 but is there any other fix? surgery?
1 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Chiari is a malformation of the skull which results in the skull being too small to contain the cerebral tonsils so they herniate...there is not a fix or cure for this, surgery is done to restore CSF flow, so if ur flow is ok, there is no surgery to be  done.

Now, there are related conditions that should be ruled out to make sure ur symptoms are not related to those as there may be something that can be done to help u there.

Make sure a full spine MRI was done to rule out Syringomyelia, tethered cord, disk issues,....also testing to rule out ICP, POTS, and sleep apnea,

U will also want to rule out a retroflexed odontoid, ehlers-danlos....

  And last u will want to have a true Chiari specialist review all ur tests.....

Always get copies of ALL testing along with reports......

Ask questions to find out if ur herniation is acquired or congenital....since u had head trauma u want to know if that is the reason u have the herniation or if the trauma just triggered the symptoms to flare.
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620923 tn?1452919248
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