I Was Diagnosed With Chiari Malformation I More Than Ten Years Ago

It is really disturbing to find out that I was diagnosed with Chiari malformation I more than ten years ago (
Low lying cerebellar tonsils projecting approximately 7-8 mm below 
the foramen magnum suggestive of Chiari 1 malformation. The finding 
was evident on the prior MRI dated 11/02/2002 as well.) but my doctor did not bother to till me or to refer me to a neurosegeon. I have been living with the chronic pain and all other symptoms for the past 10 years, I'm mad I am angry I do not know what to do
lostfortenyears lostfortenyears
2 Responses Jan 9, 2013

Thank ou for sharing your story, hope everything ok with you and your daughter. I am scheduleed to do a spinal tap on 3/4/13 any idea what is it?

How are you now, love? I, too, had an MRI done in June of 2011 for a preliminary MS diagnosis. The neurosurgeon confirmed that I had signs of MS, but it was only when I got my own records to begin receiving care at another fcaility that I saw the words "Chiari 1 malformation." My beloved and I want to the bookstore and for several hours poured through medical dictionaries and books on the brain until I figured out what Chiari 1 was, sort of. I was still in the mode of "I have MS" so I did not assertively pursue this but I have been examined by three subsequent neurosurgeons who dismissed or completely ignored the Chiari 1 finding. It was not until my baby girl, four years old, was diagnosed with early onset scoliosis in September 2012, caused by a holochord syrinx resulting from a Chiair 1 malformation that I began putting two and two together and realizing that I most likely have been misdiagnosed or incompletely diagnosed. Being with her throughout everything leading up to her decompression surgery, I learned a great deal. My herniation is 8mm in 2011. I am now going through the very lengthy process of getting in to see a neurosurgeon again, at which point I must advocate for myself. It is best to go to a doctor, a neurologist who specializes in Chiari 1, for just because a person is a neurosurgeon and sees a finding of Chiari 1 does not mean this person will follow the Chiari 1 as the cause of neurological difficulties, as you well know. Best of health to you.