Can you give any information about Visual Snow? We would love to know how this is related to my daughter’s other diagnoses.
My daughter has always complained about visual snow. She has seen two different neuro- ophthalmologists, neither of whom have great experience with EDS and neither of whom have experience with visual snow (one doctor said that it could be a “persistent aura of migraine” - but then suggested that we do some of our own research.
Upon exam, her neuro- ophthalmologist reported the following at her last visit: both of optic nerves look “funky” and “the inferior pole looks full”, but this may all just be congenital. He can see pulsations which indicates that there is not swelling of the optic nerve. He performed a visual field test, which was normal, and took pictures of the back of the eye so he can clearly track changes in the future.
My daughter has Chiari, Syringomyelia, Dysautonomia, JRA, cervical instability and retroflexed odontoid. She decompressed a number of years ago. Her geneticist is “not sure” if she has EDS. I have EDS - H, as does my other daughter (we all have Chiari); I also have MTHFR 677c & 1298C (she has not been tested).
Thank you for your thoughts.