I was wondering if someone could answer a question for me? I am very thankful that I have come across this site. I am very new to chiari malformation but not new to the symptoms that come along with it. I recently was diagnosed as having a 1-2 mm heriniation but the doc said it was not a chiari malformation. I went to my pcp and he said that he would refer me to a specialist in that area. I found a doc listed on this site that is a neurosurgeon in Mobile but when my pcp office called them they said since it was not listed as a chiari malformation I would have to see a neurologist for the headaches. Can anyone that has better knowledge direct me this area.
A neurologist, unless a chiari expert will be useless. Most neurosurgeons will be too. If you think your symptoms are being caused by chiari, then you need ti see a real chiari specialist, especially with such a small herniation.
hi thankful and welcome to our chiari family! sorry to say, but you are hitting a roadblock that many of us hit. there are several specialist that will review your films for little or no cost. we have a list of specialist on this website. i strongly suggest you call them and inquire if they will review your films. then, you will have the all important piece of paper that says you have acm1. at that point, you can then choose which dr. you would like to do your surgery. please be sure to inquire if they accept your insurance as well. there are not a lot of specialist out there, but there are enough that you don't have to use the first one you find if you are not comfortable with him. i used dr. heffez and know he will review your films at no cost. dr oro will review your films for 40.00. those are the only 2 i know for sure.
a true cm specialist will know that the size of the herniation is not what is the most important factor. what counts the most is overcrowding of the brainstem and csf blockage.
good luck and hang tough! hope you will keep us posted!
Hi...I know, we all know how frustrating this can be...and drs r not in agreement as to what constitutes chiari malformation...some look at the size of herniation...when in fact the malformation is of the skull and the herniation is the result of that malformation....
Confusing, I know...drs r very confused...but, as Lizzy pointed out, it is not the size of herniation that matters, only if u have overcrowding and a CSF blockage and of course ur symptoms....
U need to get a chiari dx from a NL...or request the films of ur last MRI and report to send to a few chiari drs like Lizzy suggested....
Also, check with ur insurance to see how u need to proceed to see a NS...if u need a referral....many that do work primarily with chiarians do not participate in insurance plans...so, u will need to find a good NL to get all the testing done to expidite ur getting to a chiari NS....
I hope this made sense...I feel like I am rambling.....
Happy to have u join our little family here, so sorry for the reasons that brought u.
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