Chiari Malformation Community
Chiari,stroke,possible other dx's
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Chiari,stroke,possible other dx's

I am 5 years post decompression, laminectomy c1- partial c-2 with duraplasty. Came out with really no complications but then migraines started but controlled. Now feels like an elephant sits on the back of my neck and shoulders then extends down to the middle of my back where the real pressure and pain sits on top of my behind.

My NS sent my for 2nd opinion to Pediatric NL who specializes in Chiari. All he told me was my Chiari was acquired and because I had a cerebellar tonsillar stroke, that is what caused mine (never mine I am having symptoms). I need to see a Vascular Neurologist. I need more than just a cervical MRI and I need a Cine MRI.

Let me add...
1. As a child I was told I was to lazy to hold my back up but did not have scoliosis but when I had my child, the anesthesiologist said I had scoliosis.
2. My stroke happened when they found the chiari in 2008.
3. Right arm / shoulder has been hurting since November 2012. I have been through PT and Ortho and stopped. It keeps pulling my neck. I was told " frozen shoulder" but when my neck muscle is not tense it is ok.

I guess my questions are: how do I get those tests, what do I do about the scoliosis, don't mention work. The NL said have the NS or PCP do it. Te NS says if he wants it done then he needs to order it.  WHAT? Patient Care here?
Tags: Chiari, Stroke
620923_tn?1393294254

  Hi and welcome to the Chiari forum,

Post op care is minimal at best...once we heal form the surgery we r no longer a patient of the Drs that know and understand Chiari....so we r set adrift alone without a paddle...scary and sad.

May I ask did ur Drs rule out ALL related conditions to Chiari b4 ur surgery, and if so what ones do u have?

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