Will relocate for Pediatric Chiari Specialist!!!

[EmbraceLife]

We are planning to relocate to find a pediatric Chiari specialist as we get nowhere here.  We do NOT have a chiari specialist in my area and our pediatrician says a 7mm herniation is very mild and shouldn't be called a Chiari Malformation.  Our neurologist has done an MRI, Bloodwork, a Urinalysis, several EEG's and has yet confirmed that any of the symptoms are related to the Chiari or if there is something else going on.

In the meantime, I am watching my child's symptoms get worse and worse everyday with new symptoms added each and every week.

I'm treated like the over protective mother ... I've started trying to capturing things on video and in pics to take back to the neurologist.

If anyone knows of a great pediatric neurosurgeon anywhere in the United States, please let me know as we are doing our research for a new place to live based on finding a chiari specialist!  We would prefer to move to St Pete FL, Nashville TN or Phoenix AZ but are open to anywhere even if we have to tolerate snow!

[EmbraceLife]

Hi.  Thanks everyone.  

I am just SO frustrated.  My little guy is WORSE.  I struggle to get testincg.  We just had an abnormal eeg along with neck pain, squinting, upward eye gaze, shivering, wringing hands, shaking his head, difficulty chewing, stiffness, loss of speech, tonque issues, confusion ... but none of this is supposedly related to the chiari and nobody can tell me what it is then if it is not the chiari!  But, we are NOT seeing a chiari specialist as there's none around us

I'll start with the info you've provided.

THANKS!!!.

[selmaS]

  Hi.....the only Ped NS's I am aware of for Chiari is Dr Frim in Chicago and Dr Henderson in MD takes both peds and adults....I would suggest u call both and research them both....

I know Dr Oro does not take patients under the age of 18....

  I wish I knew  more...and I hope to create a peds list or to add some indication on our list as to who will see peds.

Dr. David Frim
University of Chicago Children's Hospital
Pediatric Neurosurgery
5841 S. Maryland Avenue
Chicago, IL 60637
Office Phone: [phone]
Office Fax: [phone]


Dr. Fraser Henderson
7830 Old Georgetown Rd Suite C15
Bethesda, MD 20814
[phone]



     "selma"

[STL5]

in St. Louis, Missouri there are two pediatric neuro doctors that treat chiari:  Jeffrey Leonard, MD and Matthew Smyth, MD.  They were the two doctors that my neurosurgeon offered to refer me to if I preferred not to be treated by him.  They are associated with St Louis Children's Hospital.  I do not know what their referral policy is since I liked the neurosurgeon I saw but you could probably call their office.

[EmbraceLife]

Hi.  Thanks.  I've been looking through it ... and I have called a couple of them.  I'm specifically wanting someone that can help a 15 month old ... and some places don't take care of children until they are 12 ... and the place we are currently at doesn't believe any of the neuro deficits being experienced are related to the chiari.

We're out of options in our town and making the calls and are seriously going to go where ever we need to in order to find pediatric care.

[DANI0103]

Hello,
we do have a list of doctors and specialist in most states take a look at the list it may help.
-dani