Discussions By Condition: I cannot get a diagnosis.

Abnormal optic nerve shape

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: PixieMischief
  • October 4, 2007
  • 11:44 AM

Hi all im 24 years old and was born with a condition called Osteogenesis imperfecta. A genetic connective tissue disorder that causes fragile bones. Im stating this cause maybe it has to do with my eye issue.

OK well ive seen many optometris and a few optomologists. anyways my eye site has been dropping yearly since I was about 13 was told it was normal and would "stabilize" when I hit end of puberty at 18. anyways it hasnt. my eye site in one eye i believe is now -450 and probably worse then that just those eye tests are confusing when they show lenses almost the same lol
anyways this year I went for my 2 year check up I go every 2 years since my eye sight drops so much. and she freaked out saying my optic nerve was not normally shaped and that I might have glaucoma I was like :| I didnt know btw then that it can be treated so I freaked out since I know its leading cause of blindness in older people or one of them. Anyways she wanted me to see a specialist ASAP.... he did tests... he came to talked to us and said tests where all fine and he had no idea why I was sent there... he looked into my eyes and then said now I see why you where sent here. Your tests for glaucoma are negative.. your optic nerve is not normal. he kinda shrugged like it wasnt a big deal nor should be worried about. I was like well since glaucoma is caused by not enough blood flow ect.. if my optic nerve is not straight obviously blood flow is impared. told him should I not get checked yearly? he was like I Guess.. good idea. usualy thats what I recommend (He wasnt gonna recommend it till I said it Im sure). Ive seen many eye doctors and such and they never mentioned this odd optic nerve deal so either they ignored it or its new.

anyways I have no idea why my eyesight is dropping so much and why my optic nerve is like this and if its not new maybe its the cause of my eyesight dropping? But they said I had no eye disease other then im miopic (cant see from far). so im very confused... can you have a optic nerve thats bent and out of shape and have nothing wrong? Im at higher risk for glaucoma I know this cause of the nerve AND optic nerve has collagen and my genetic condition is collagen related. so plan to get checked yearly. but im really confused is something wrong or not why is my eye site dropping are those 2 things related or not.everyone says my eye site drops due to my pc use but I doubt thats the only reason.
so I have a optic nerve that is "Weird" with no diagnoses. im very confused about it all.

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4 Replies:

  • To tell the truth, every opthamologist I've ever been to has always been so laid back that I thought they would slip into a coma during our consultation. Their bedside manners are horrible (non-caring/unsympathetic). They must teach it in med school. I've worked with a lot of emergency room docs who, while they don't know exactly what is wrong, can tell you definitely that some anatomy or problem is not right. So I think that's what happened with your two docs and the optic nerve. I think if you could look inside anyone's body, you would see multiple areas that aren't quite right to look at, but still function normally. I've seen xrays of kids whose hearts are on the wrong side of their bodies! Since your optic nerve tests were ok, you could stop worrying about that. (or go for a second opinion). I didn't really see anything on any web-sites in regard to O.I. + eye problems. Go on-line to some of the societies and chat with other O.I. patients. Possibly your failing eyesight is a totally different problem. Be prepared for another big change when you reach 40. I had to have a new prescription every year til I ws 45. I would be worried that the optic nerve is being pressured by something outside the eye (in the brain or skull) and that you might need a CT or MRI (I don't know which would be better). If blood flow is restricted to the optic nerve, the loss of eyesight is usually sudden and not gradually worsening vision as your is.
    rad-skw 1,605 Replies
    • October 5, 2007
    • 00:05 PM
    • 0
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  • well apparently my nerve instead of being straigt, is a zig zag, which means less blood flow.and I did read that glaucoma is more likely with OI due to there being collagen in the nerve tissues ect. I told him that I had brought him papers about it cause we really didnt know what was wrong I said ya know shouldnt I get checked yearly due to my being more likely ect with how my nerves are. he was like eh I guess. all they do anyways is test eye preasure as far as I know. so simple testim just concerned that this weird optic nerve thing is why my eye sight keeps dropping and dropping and dropping. YEARLY I cant even afford to keep up with new prescriptions. Was told that would stop at 20 that it would stabilize and it hasnt so I just wonder if its due to that nerve or something. I dont want to go blind :| im down to -425 or so =/all I know is im verrryyy confused.and ive had MRIs before a few times no tumors lol
    PixieMischief 16 Replies
    • October 6, 2007
    • 05:54 AM
    • 0
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  • Hi - I have been told the same thing by my opthomalogist. I went in for an eye exam with a random optomistrists and she got all bend out of shape when she saw my optic nerve and ordered a visual field test right away. I got worried and went to my opthomalogist. He did some pretty advanced testing and told me that my optic nerve is shaped tilt but I don't have glaucoma so no worries. He then told me to come back in six-month, and one year. The doctor has always been very re-assuring and said some people do have this type of shape. Today I went back for an annual checkup and the docotor's father (another opthomalogist) was there. He ordered "Optic Nerve Topography" tests for both of my eyes. He then told me they'd like to continue monitoring my eyes to make sure the thickness of the nerve don't change. I assume your eyesight dropping is as a result of something else. Do you know now? Hope everything is fine with you.
    Anonymous 42,789 Replies Flag this Response
  • I also have OI and bad vision, docs can not correct my vision any better than 20/40. Had a mri last year and was told my optic nerves looked small
    Anonymous 42,789 Replies
    • November 25, 2010
    • 07:14 AM
    • 0
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