My daughter who is now 22 & was diagnosed with a posterior fossa arachnoid cyst earlier this year. It is at the top of the spinal cord, sprouts off the top of the spinal cord in the skull behind the brain stem and behind the cerebellum. It has exerted enough pressure to cause changes in the bone behind it. It is about the size of the tip of the fore finger (several cm). She has severe adhd, overly accute hearing, dizziness at times, extreme fatigue, increasing back/neck/tail bone pain (she has moderate scoliosis which developed in adolescence), feels uncontrollably cold on a daily basis, reports nausea, sleep problems, excessive thirst, blood sugar problems and has frequent anxiety. The neurosurgeon, and neurologist we've seen say that none of her unusual sympstoms are due to the arachnoid cyst as it isn't invading any brain structures. When asked why it would produce changes in the bone at the back of the skull I was told it was due to pressure. However, they deny any effects from this pressure. I have watched my daughter struggle with so many issues and they are worsening. Ideas?
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