Thanks Merlin. I did get her in to see the neurosurgeon who diagnosed her 28 years ago. I've been trying for 2 months. They finally listened to me. She is having an MRI Tuesday to show from Brain Stem to Cervical Spine. Once that is complete I pray we get some better answers than we've been given.
I guess every person is different after revision so my question about adjustment time was off base. The neuro who performed her last revision kept telling me she'll adjust, just give it time. But didn't give her any sort of possible time frame. He also told her you don't have Dandy Walker, without an MRI evaluation. The Neuro we recently saw said you can't see her cyst without completing an MRI so now I'm questioning the one who recently revised her shunt. You're right the neuro community is very small so we are at their mercy. They don't really know the pain levels in people nor the weird feelings they have in their bodies so they just want to put a bandaid on the problem rather than helping find and truly fix the problem.
Thanks for responding back. I'll let you know how things go after the MRI and the follow up appointment with the neuro.

Sharon


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