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Hydrocephalus, PTC, - now Sacral Coccyx pain w/ tingling legs and feet

Do any Zipperheads who also have PCT have symptoms of spinal pain? I am having sacral coccyx pain with numbness in legs and tingling in feet. Also get one of my ears fill up with fluid sometimes. Never had any of theses symptoms before. Lots of depression and anxiety too. Don't have much trust in neurologist around me as they are more concerned whether it was acquired or congenital or treating migraines. I feel that my headaches are pressure related and so is the spine.  Just at wits end on all of this. Trying to find a Chiari Specialist that will treat me for the Zipperhead I am. Now with symptoms. Any answers are appreciated.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi did u try to go to ur original NS?

May I ask what state u looked for help in? Can u go outside ur state?
Helpful - 0
4760166 tn?1398357313
After my decompression surgery I also developed PTC / hydrocephalus and had quite a bit of back pain, but the most alarming symptom (for me) was that I could actually feel my heart beat in my spine.  I've had some arrhythmia issues in the past and have experienced "bounding pulses" and it was just like that, only going down to the base of my spine.  Weirdest feeling ever.

Who diagnosed you with PTC? was it a chiari specialist?  have you had a lumbar puncture?
Helpful - 0
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620923 tn?1452915648
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