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amandah14Participant
Dr. Google:
“Although optic nerve hypoplasia has been associated with maternal diabetes, maternal alcohol and drug abuse, maternal use of anti-epileptic drugs, and young maternal age (20 years of age or less), most cases of ONH have no clearly identifiable cause.”With 100% certainty I can say that all reasons listed do not apply in my case. I guess the, “no clearly identifiable cause” does of course haha!
amandah14ParticipantYes, she is highly intelligent. I do wonder if there is more information out there that she isn’t aware of. Her response as to why I have bilateral optic nerve hypoplasia is the same as my other issues, “some people are just born that way.” She says that I am not blind as long as I can be corrected with glasses. Not much input on my prognosis. Thankfully my pressures stay the same so she thinks it is unnecessary to treat me for glaucoma at this point. My pressures are low enough to call it preglaucoma instead of full blown glaucoma. I find it interesting how I have blind spots in both eyes in the same place that I can not see a blank image area, or loss of vision area for better wording, while I see with them.
amandah14ParticipantI have a lot of questions in that case. Is it rare to be found in both eyes like me? Do you think (I kinda do now) that the optic nerves and EDS issues are separate things? Are you able to point me in a good direction on info about this and maybe why I was born this way (or why they stopped growing when I was a child). I wonder if it will make me go blind.
amandah14ParticipantYes, mine is both eyes with preglaucoma pressures of constant 14. She says it is since birth. I had glasses by age 11 with myopia and astigmatism in both eyes as well.
amandah14ParticipantI was denied cause they didnt feel anything. That was before EDS diagnosed. My family history was considered suspicious. I was cleared for vEDS for normal echo.
amandah14ParticipantI have requested both but doctors denied either for me. Now I do not have insurance. This does sound like a great plan. Maybe one day I will be done sifting through doctors and find one willing. So then nobody can feel the abnormalities on their own?
amandah14ParticipantOk serious brain fog I cant believe I did that! Optic nerve hypoplasia please. I knew hypoplasia just means underdevelopment of tissue or organ. My mind thought I put in the specific area. Look at that. Wow. Sorry.
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