It's been over 4 years since my surgery for acoustic neuroma and my Doctors are very impressed with my recovery. About 6 months ago, i started having bloody discharge when blowing my nose. My husband and i just thought it was dryness from the wood stove burning. About April, it seemed to be getting worse, and we were no longer using the wood stove, so I went to my PCP. He had no idea what it was and sent me to an ENT. I chose to go back to the ENT who assisted my neurosurgeon. I saw the NP in that office. She thought it was dryness that is common with people my age and recommended nasal irrigations and prescription gel. after 3-4 months, it was not improving and about a month ago, i woke up with the right side of my face swollen, my right eye almost shut. my PCP immediately put me on an ABX, and proceeded to send me to a Dermatologist, he did a biopsy to rule out squamous cell carcinoma, which i just received notice today, was negative for cancer. His working diagnosis was trigeminal trophic syndrome. I proceeded to see the ENT that following monday. the dermatologist had called the ENT, prior to my visit and discussed that diagnosis with her. she then told me she had never heard of this condition and neither had the head of the ENT dept. We have all been Googling the Intenet. It appears to be a rare condition and we have learned that any treatments have not been very successful. It seems to be sequela of the facial paralysis from the surgery. i have parathesia of the right side of my face. It is ulcers within the nasal cavity. I was just curious if anyone else has been given this diagnosis and what, if any treatments that have been attempted
