Hi and welcome to the Chiari forum.
What u r experiencing is what we on this forum call the Royal Chiari runaround.One Dr says u have it, one says no, the next says mayb...ugh
A true chiari specialist is where u really need to go, and here is a link to a thread of drs names we have compiled....it is not meant as a referral, u still need to research the drs. ...and keep in mind u may have to travel...we all do not have a chiari dr near us......
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483
Next, Chiari is not really as rare as they claim it to be...it is well informed drs that r rare!!
May I ask what r ur most pressing symptoms to date?
Have u had a CINE MRI to determine if u have a CSF obstruction, overcrowding?
How about a syrinx? Have u had a MRI of the thoracic and Lumbar spine as well to rule these out?...u will also want to rule out Ehlers-Danlos, tethered cord, sleep apnea....bulging disks...there is an array of issues u can be dealing with all at once and y many drs r perplexed.
Plus they read the same old out dated info that is on teh web about it being rare, there r way too many of us for this condition to be rare.It is just msdx'd and the drs do not connect all the symptoms to the one issue, they consider many conditions none of which r helped with the treatments or meds they offer.
With Chiari u have to modify what u do and how u do it in order to be able to keep going.....save energy one day for a special one later in the week..etc
Listen to ur body.....do not over do by lifting, bending....or not getting the proper rest u need, as a chiarian we tend to have many sleep issues, insomnia being one.
We r happy to have u join us, but not happy about the reasons that bring u.
"selma"