Got the Chiari diagnosis last week from a spinal surgeon. Today, the neurologist brushed me off, gave no answers and said it wasn’t Chiari (based on a quick glimpse at old MRIs)
Pretty discouraged and down, compared to last week. Anyone have this happen? What should I do next? He’s testing for Lupus and I had to fight to get brain MRI ordered. I don’t believe that it’s not Chiari and don’t know what to do.
Ashley
Hi Ashley,
Don't worry. I had the same thing happen. Local NS said I didn't have a Chiari, but three other Chiari neurosurgeons all agreed I did. I had to travel out of state to see the experts and get properly diagnosed. Chiari I Malformation is a hotly debated diagnosis where I live. Not all doctors believe it exists. Perhaps you could take or send your brain MRIs to a third neurosurgeon. At least that way you would know the majority opinion. Don't be discouraged. Surgery isn't urgent. Most people go years undiagnosed before they're treated. Keep in mind also that you're not seeking a cure, just treatment, and treatment generally will still have the same effect no matter when you receive it.
Let me try to help you. Similar story here. The day after I received a call from Dr. Heffez's office informing me my older MRI showed a 2mm herniation, I had an appointment booked with a new Neuro. She ordered a new brain MRI, and when she went over results she said everything was normal. The radiologist and she both said it was all normal, and I told her I already sent my older Mri to a Chiari specialist, and he said I have a small Chiari. She told me I don't have Chiari, so I just said ok doc. Ever hear the expression that you can't teach a pig to sing? nuff said.
So, now I never even mention Chiari unless I'm in front of a Chiari specialist. Most Neuros only get interested when you have a solid objective finding like foot drop or ptosis, and most GPs these days are mainly good for earaches and sore throats. God forbid they should learn more about a rare disease like this or any other new thing; they know it all already.
My suggestion is let your doc do the basic autoimmune and routine blood-work, and seek out consultation with a Chiari specialist, like Heffez, Oro, or TCI and Mayfield for the Chiari diagnosis and plan. Where are you located? Perhaps myself or others can guide you further.
Well, they all ask to review records first, and that's a good thing. I'm new and I don't know the docs you mentioned. Dr Oro is closest to you, but he requires 5mm min. I would send stuff to WI Heffez or one of the other specialty centers.