Chiari Malformation Community
History of myself and daughter
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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History of myself and daughter

Recently, my daughter has been experiencing severe headaches, vomiting, weakness in limbs, tingling in fingers, shoulder pain, hip pain.  This came on very quickly 6 months ago.  She is 35 years old.  She has been in the emergency room 4-5 times.  The symptoms go away and return for no reason.  They don't really know so she has been diagnosed with complex migraines.  I am trying to research Chiari because of her condition and mine.
I am a 57 year old woman that has had a shunt for hydrocephalus since I was 23 years old.  I have experienced many problems due to shunt infections.  When I was diagnosed, MRI's were not common or even invented. ?  Therefore, I was diagnosed with Pseudotumor Cerebri (false tumor of the head).  I've had 24 spinal taps.  My opening pressures were usually around 300-350 after drawing enough off the day before to normal.  
Both of us experience neck pain and if i strain or laugh too much, I get a severe headache even with my shunt.  
I am trying to find a Chiari Expert or Specialist that we both can go to locally.  We live in Raleigh NC.  I really don't want to go to Duke because my insurance won't cover it but I will to help my daughter.  I would really like for an expert to evaluate both of us.  I need your input if you know of an expert in North Carolina or surrounding states.  Thank You for your help.    
620923 tn?1452919248

  Hi and welcome to the Chiari forum.

I am glad that u too want to have more testing, as u mentioned MRI's were not always around to help get a dx or a correct one and now they they r, there r far too many Drs that do not really know how to look at Chiari and then consider it an incidental finding.

There is a Dr Rosner in NC....and if u want to go to MD there is a Dr Henderson....both r considered Chiari Drs....we have a list of Drs members went to and liked...but the list is not a referral u need to use the list as a means to research the Drs and find the right one for u and ur DD and it may not be the same Dr...but if they consult one another that would be great....see a few Drs and go with the one u r most comfortable and u feel have the most experience with Chiari...big named institutions r not always the way to go....look at the Drs instead.

U will find the list float on this first page or the 2nd...or use this link to the Health  pages for that list and more helpful info and tips -http://www.medhelp.org/health_pages/list?cid=186
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