Where to Go from here?

General
#1

I really dont know where to go from here. I live in Georgia I was told i have Chiari in December of 2010. The neurologist told me not to worry about it and gave me Topamax to prevent the migraines and Neproxin to help with the pain. I have three small children and i can not take the topamax because it makes me very sleepy and the neproxin does nothing to help the pain. I have neave pain that shoots from my lower back and hip down through my left leg sometimes its so bad that it makes it hard to breath. I thought the loss of 40 lbs would help but it doesnt seem to be helping.

When i asked my neurologist questions about the symptoms he just seemed to blow it off . the words " you have a condition called Chiari But dont worry about it" do not settle easily with me

I have been to the hospital at least 3 times the doctors look at you like your stupid tell you theres nothing they can do and give you pain killers and muscle relaxers. Where do i go from here? IS there any help close that i can afford . Please any help on doctors, main management , or any other help would be great and i would be very thankful.

#2

Have you seen a NS about your Chiari? Hopefully, you can find one who know Chiari near you. You may need a CINE MRI to check your CSF flow.

My NL is worthless when it comes to chiari. He told me that my chiari was to small to be causing my symptoms then why did most of them go away after surgery. I have even less respect of the ER when you have Chiari.

Have you had a good physical lately? That might be a place to start to make sure your hormone and vitamin level are good. It seems like several of us battle vitamin defiencies along with chiari.

If you haven't already started one, it may be a good idea to get any test results pull together in a binder and also document your symptoms.

Hang in there! It's hard dealing with this and 3 little one.

Diana