What is Arnold Chiari Malformation
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain.
Arnold-Chiari Malformation II occurs in almost all ch...
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Chiari Zero
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Does anyone else out there have what is defined as Chiari Zero (meaning no herniation but all the symptoms)??? I'm so frustrated. I just found out from a prominent Chiari facility that they will not see patients that have been diagnosed with Chiari Zero. Ahhh!!!!!!! So, I have Chiari, but you won't treat me? I don't know what to do now. I have all the neurological symptoms, aches, pains, etc, etc, and the only neurosurgeon I've been to (the one who diagnosed me) no longer has his medical license! Just because you don't have a herniation does NOT mean you don't have decreased CSF flow...I'm living proof! Any suggestions?
Posted on 11/04/09, 09:11 pm |
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Hi...I think the only thing to do is to keep searching for the right NSG. Perhaps making an appt with one that you've heard for sure that they honor the patients, listen to them, and have no barriers in their thinking about CM0. I know UCLA, Batzdorf, used to be that way, really did not believe in CM0.
Do you mind sharing what big CM ctr you contacted only to learn that they do not believe in CM0? That might help other patients, to know to avoid that place. Was your doctor Dr. Rosner? I heard something about him losing his license. That was a very sad deal! And such a loss to the Chiari community. Keep looking, don't give up. I am about to go see my 6th NSG!! I always cry hard and say I'll never go see another doctor, then pick myself up and dust myself off and strike out again on the search. But, for awhile, I have to go "under the porch and lick my wounds" like an ol' hound dog! here4ya 
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Hi there .. I have mild cerebellar tonsilar ectopia, meaning Chiari Zero .. mine is not the right length to be a Chiari One .. or any of the others .. I also have a syringomyelia lesion in two-3 parts of my spine, a shunt, and all the pain that goes with it, and scoliosis .. totally stinks :(
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mother teresa, obviously, you are a good example that "chiari zero" does cause symptoms!! Yours obviously affected your CSF flow in your spinal canal to where you now have a syrinx!!! I wish all docs could see you and your imaging, etc...so that they would be convinced that CM0 is a reality and DOES cause symptoms!!
I'm so sorry you are dealing with this! God bless you here4ya
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Thank you for your comments. Yes, my doctor was Dr. Rosner & he was just an hour drive from where I live. I know they are working to hopefully get his office up and running again. The facility I contacted was Dr. Oro at the Chiari Care Center outside of Denver, CO. They told me they do not treat Chiari 0 patients, nor do they treat out of state spine patients (FYI). Good luck!
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I hate hearing that Oro's office told you that. I know of many people from out of state (CO) who go or have gone to Dr. Oro. You might have gotten a new office worker perhaps? Or maybe that is God's way of keeping you on the right path and not on the wrong one (for you?)...
I also have never heard of Dr. Oro's office saying they do not believe in CM 0!!! So sad for you that politics has caused you to lose your good doctor (Rosner)!!
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