Chiari Malformation Community
Newbie Question
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Newbie Question

Hi, all- newbie here.
My daughter's been getting progressively worse headaches.  She was in the ER on Saturday, CT scan showed low lying cerebeller tonsils and crowded foramen magnum, concern for chiari 1 malformation.  First MRI is tomorrow at 7am.  My daughter's six.  My daughter's pediatrician is very nice, however, he is not saying things about Chiari that are common faqs about chiari on almost every chiari page.  Such as, he told me you would know if she had chiari by now, I'd have known when she was a baby, that symptoms aren't on and off, that she would have spina bifida if she had chiari, etc.  I know, I know....
So.... nervous about switching doctors, we are on medicaid.  I am looking and called the health care providers asking if anyone in Kansas specialized in Chiari.  They of course told me I needed to listen to my doctor.  I was completely planning on listening to my doctor, I just wanted their names for future reference.  I swear, you ask one question and you're a neurotic psychopathic overprotective nutjob mama.  LOL.  Two questions and, oh dear- !  Anyways, I was hoping for some suggestions!  Anyone in the Johnson County area?

Thanks!
620923_tn?1425323098

  Hi and welcome to the Chiari forum.

The statement that u would know by know she had chiari bcuz she would have spina bifida is a false statement...that is Chiari type II or III...not type I....and I had symptoms all my life and was not dx;d until age 48...so, do not listen to Drs that really do not have a clue..and there are many websites with false info as well so it can get difficult to navigate....take a deep breath...and just make sure u have a true chiari specialist for her and that they test her for all  related conditions and issues.

  We do have a list of Drs, but it does not indicate which ones treat children....I know there is a Dr Frim in Chicago, and the Drs at TCI in NY, Dr Henderson in MD.....I know there are more, these are the ones that stick out in my chiari brain fogged mind....lol...here is a link to the Health pages ....look at the list and use it to research Drs..as it is not a referral.

http://www.medhelp.org/health_pages/list?cid=186

Push for answers and do not rely on Drs if u feel they r not the right ones for ur child....

Once she is dx'd more testing will come next...MRI's to dertermine syrinx's...tethered cord, disk issues, sleep apnea, CINE MRI to see if she had a CSF obstruction, ehlers-danlos....vitamin levels...thyroid....ICP, POTS....

Always listen to ur mom's gut as u have it for a reason....
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