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Almost 2 years ago at a regular eye exam, the dr noted that I had bilateral optic nerve swelling. I have since been followed by a neuro-ophtomologist. All the tests were WNL and no changes in 1.5 years. No headaches, nausea, see colors just fine, no floaters, etc. In Jan, I was diagnosed with EDS-3. I can’t seem to drop the thought that it’s somehow related. I did have an MRI of my head which the neuro-ophtom said was normal. Am I missing anything? Anyone experience anything like it?
Absolutely! Optic nerve head swelling can be due to high intracranial pressure, but doctors are missing this diagnosis frequently in our case (likely because we may not present as “typical” with enlarged ventricles or frank evidence of IIH (or pseudotumor cerebri) on MRI. If you have symptoms of high intracranial pressure (these often mimic those of Chiari, cranio-cervical instability), you may get some relief by reducing your intracranial pressure with Diamox while the cause is located. Tons of information about this in the book — do you have a copy? I hope it talks you through this! 😉
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