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?
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?