January 31, 2016 at 11:56 pm #958cure4chiarieds&moreParticipant
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.February 3, 2016 at 12:35 pm #5824Dr. DianaKeymaster
Two thoughts — First, what your neuro describes is something we often see with high intracranial pressure without (frank) papilledema. The optic nerve is not truly swollen, but doesn’t look quite right, either. Because high ICP is so common with chiari (and “chiari zero”) and in EDS/joint hypermobility, I wonder if your daughter may respond well to reducing her ICP with Diamox. Visual snow can be a sign of very low acetylcholine. Parasym Plus (at http://www.VagusNerveSupport.com) was designed to boost acetylcholine in such a way as to also stimulate the vagus nerve (helping digestion, normal bowel movements) while also reversing some of the central nervous system symptoms (like brain fog, poor cognition and visual snow). Fingers crossed for you!March 5, 2016 at 1:23 am #5897soulfeastParticipant
Neurologist saw “indistinct optic disc margins” in one or both of my daughter’s eyes. Is this the same as you are describing, Dr. Diana? She has EDS, Chiari 0-1 (Depending on who is reading the MRI), small foramen magnum, POTS and MCAD (currently MCAS but suspecting CM as well).March 6, 2016 at 6:01 pm #5898Dr. DianaKeymaster
Yes, indistinct disc margins (especially nasally) are often seen with folks with high intracranial pressure (without frank papilledema).
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