Chiari Malformation Community
chairi malformation or migrane(migraine)? ?
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chairi malformation or migrane(migraine)? ?

My 16 year old daughter Katie woke up on 10/9/12 with a stomach ache and bad headache. Took her to family doctor and the PA gave a Z pack antibiotic, checked thyroid and mono and strep. By Friday 10/12/12 was worse dr called in tramadol and carafate. By 10/14/12 she was having trance spells at school like seizure activity. Back to family doctor on 10/17/12 by this time headache was excruciating and new symptoms arising. The sr did more lab work and CT scan all normal so gave bupap and aciphex. By 10/20/12 while getting ready for my dads wedding she's screaming in the floor holding her head telling me that her brain was swelling. A short time later pain was now moving into neck and back down her spine.  Er dr gave tordol and benedryl which did nothing.  On 10/22 we went to the children's hospital for a neurologist to are her and was admitted. During admission her rightvarm went numb. By
tuesday she was having blood pressure issue they said as orthostatic hypertension which caused her to faint back in May. Now today we are still in the hospital 5that days later cannot handle noise or lights having spacing out spells pain level stays atv9 or higher with no relief since the 9th. Numbness and tingling down both arms pain still shooting down the spine and into shoulders. Concentration is not easy either. She's been treated like a migrane (migraine) patient tried every acute drug available with no relief and was diagnosed 2with days ago with a type 1 chairi malformation but it could not be causing headaches like this......im starting to think differently! !!! What do you think?????
620923_tn?1405964489

  Hi and welcome to the Chiari forum.

  Yes, Chiari can cause HA's and issues like what she is experiencing.....the problem is too many Drs r not trained or educated in Chiari, so until u get to a true Chiari specialist u will continue to get Drs with this opinion.

Get copies of her MRI and the report and all testing done on her to date....and send to a Chiari Dr for review....ask one of her current Drs to ask for a consult of one of the chiari drs....if they refuse, take her to someone else....

  Chiari compresses the brain stem and the spinal cord so, ne symptom autonomic or not can be from chiari or a related condition.

  Please see our list of Drs and use it to research Drs, as not all on the list may be true specialists but did treat a member here.

The list is also not a referral.....

Please keep us posted on how ur DD is doing <3
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