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American Foundation for the Blind® | Reader's Digest Partners for Sight

Optic Nerve Atrophy

i Am 46 have optic nerve Atropy, There are no close support groups and places that help you adjust to living so i have been reading here on the board so forth all i know is there is nothing to be done once the nerves are dead thats it, I would like to hear from anyone else with this condition and how you started adjusting to everyday life etc
Thanks Dora

There are currently 27 replies


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I have Retinopathy Of Prematurity.


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My daughter was born without an optic nerve in her right eye. She has only the sight in her left eye. Many years ago, I had asked the eye specialist if there was such a thing as an optic nerve transplant and he said that it was in experimental stage. I have started to look for an answer to that question now many years later hoping that maybe there has been a break through.


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Dear Dora we know once a optic nerve is dead it can't be handle by modern medical science but there is the hope in yoga and pranayama and by with the help of some ayurveda.Patanjali yogpeeth India has many proof of patient which lost their optic nerve but with the help of Yoga their optic nerve start working again.Dear optic nerve dead mean it is damage or srink so the light impulse is not going to brain and the patient become low vision or blind.So dora trust me if you say then I will give you address of our clinic and yoga classes and these are totally free of cost.Below is our official website.

http://www.pyptusa.org

If you want you can contact me in my email

Sbargate@yahoo.com


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Hi Dora I have optic nerve atrophy as well it's been a difficult adjustment for me more difficult than most but that's cause I've been basically on my own I'm a cane user and am learning Braille right now it was miss diagnosed for at least six years large print worked for me for a little under a year and I've been relying on things read aloud in my experience the best thing to do is stay possitive and focus on the things you can do
What have you been doing to adapt

Lindsay


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I have cataracts and glaucoma and some other stuff like dried eyes and retina detachment too, but when you go blind you'll just have to adjust and go with it and learn quick, how to use a cane, braille, and other crap like that.


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Hi, I'm 46 and was diagnosed with Optic Nerve Atrophy at the age of 16. I was severely misdiagnosed as a young child and had to deal with vision loss due to the strain. I am surviving. I am still able to drive currently, daylight restricted, but have major panic attacks whenever it's time to renew my license. I fear the day I am no longer able to drive. How will get to work? There si no public transportation here. I fear my life will end as I know it at that time. People don't understand my disease. They see me and I look normal. I have prisms in my glasses, as my muscles are now too weak to hold my eyes straight. I have held this in for so long. I just wish I had someone to talk to, someone to listen to all my fears. I have not found a support group for this locally. I feel so alone in this world and meaningless. Is there anyone out there that really understands how I am feeling right now?


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I was diagnosed with pseudotumor cerebri in May of this year (2011). This rare condition has taken the sight of my left eye, and has left me with limited vision in my right eye. At my last eye exam, the doctor mentioned that I had optic nerve atrophy. I already knew what that meant after indepth research of my own condition. I've learned a great deal about eye conditions, and I know that scientist are working on optic nerve regeneration. In short, this means they have done studies on blind mice to regenerate their optic nerves, and received good results. So, with that being said, don't give up. Most of all, keep faith in God!


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I do
And there is one thing I must say when one door shuts another opens
I'm reliant on my mom to get around as far as something like driving because the closest thing to public transportation is a days walk away but there are options whether you know it yet or not you could hire a driver or talk to the service for the blind about it or somthing like that
Your lucky tho you know I never got past the written before my vision got so bad I couldn't drive. I am legally blind and I'm 17 I haven't been able to even see faces clearly since I was 15
In the words of Forest Gump life is like a box of chocolates you never know what your going to get
It wont be the end of the world loosing your vision just stay positive it will turn out good in the end
Lindsay


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i have damage to my optic nerve i am colorblind and legally blind it has been a total life change i try to stay possible but i struggle with depression some time i c shadows and i dont have brightness its dim and grey i lost my sight 4 times in 2 years i have learn that there is a 60 percent i will get ms within 10years for now i need something to do so i am researching program that i can learn from


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Hi everyone, I found this page by chance and I am happy I did. I idenify with those who saw they feel alone as well as those who say stay positive. I have optic nerve atrophy and although this is how I have always seen so it is okay with me, I am constintly told and retold what I cannot do. For example as a freshman in college I had an adviser tell me I was not "college material". I am now a college graduate! The biggest thing for me right now is trying to figure out what I am actually capable of and what others believe I am not capable of does that make sense? I am 28 years old and I do not current drive and it impacts every part of myself esteem. I am okay with public transportation. For me it is not about driving, it about me believing I can but hearing the voices of my mother and other family telling what I cannot do. I believe I see well enough for at least day time driving. I have two small children and I would not even want to drive if I felt it was unsafe for me to do. Does anyone have any advice having taken a driving test and having optic nerve atrophy?
Thank you every one for sharing your personal feelings about your condition. I too feel alone and have lots of fears. My husband and close friends are supportive and kind, but no one really gets it unless you have experienced it.


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DEAR HOLLYSTROUP
I HAVE THE SAME CASE AS YOUR DAUGHTER BUT SOME HOPE IS THERE IN UMBILICAL STEM CELL THERAPY. YOU MAY SEARCH IN 'STEMCELL CHINA' ALL THE BEST !


Re:Optic Nerve Atrophy



DEAR HOLLYSTROUP
I HAVE THE SAME CASE AS YOUR DAUGHTER BUT SOME HOPE IS THERE IN UMBILICAL STEM CELL THERAPY. YOU MAY SEARCH IN 'STEMCELL CHINA' ALL THE BEST !


Re:Optic Nerve Atrophy



DEAR HOLLYSTROUP
I HAVE THE SAME CASE AS YOUR DAUGHTER BUT SOME HOPE IS THERE IN UMBILICAL STEM CELL THERAPY. YOU MAY SEARCH IN 'STEMCELL CHINA' ALL THE BEST !


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For all who have optic nerve atrophy, you are not alone. Yes,it is true that Optic nerve atrophy is death of the optic nerves (which is the nerve that transmits vision images to the brain. However, thankfully, our brain is not dying with it (think of it like a transmission wire that has become defective. In August 2010, after seeing 5 specialist (thinking I need to find an answer to why I cannot see things without a magnifier and why I have trouble seeing in the dark and why I have problems seeing white objects on white backgrounds). Well, I got my double diagnosis. I was told that I have Optic Nerve Atrophy and Cone Dystrophy. I was not thrilled with that information, but I was glad to get some answers. The doctors could not give me a final answer as to how those conditions came to me. I suspect that I developed those because I am an adult onset insulin dependent diabetic. Most of you are probably not diabetc. But diabetes does attack the nerves.

Please, do you feel you are without hope. There are many places that may be able to assist you. The Salvation Army helps folks with: Food and shelter. They would be a good place to ask for help for getting to the store or doctor.

As far as getting other help, your local SRS State office should have a Rehab program. Get with an SRS caseworker for additional help.

Just remember, it is important to know: You are not alone, there are people that have the same condition, and don't isolate yourself.

-Take care!-Linda


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I just came upon this site also. I cannot drive x2 years. What a pain! My state (Pennsylvania) visual services have helped immensely and my Orientation and mobility instructor is terrific! I'm applying to Southeastern Guide Dogs and hope to qualify. That will help with my loss of depth perception and constant tripping over everything! I'll have more confidence to take taxis places. What is the worse is most people say "But you look like you can see" and some day are indeed better than others! I feel like a fraud- and I'm NOT! I have not been diagnosed as to the cause of optic nerve atrophy, but more docs are in agreement- it's either autoimmune or iscemic. So I take 2 regular strength aspirin for iscemia and a chemotherapy found useful in autoimmune disease .That should cover it, but my vision continues to decline. I would love to correspond with others with Optic Nerve Atrophy!
leepupo@ptd.net


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Hello everyone. I came upon this website after a couple of hours of doing some research. I was diagnosed with two conditions. One is Keratoconus in both eyes and Optic Neuropathy/Optic Nerve Atrophy in my right eye. The atrophy turns out to have been caused by trauma that I suffered in 2007 from being assaulted

The keratoconus itself is mild. But the atrophy is the factor that has caused my vision to be terrible. My vision started making a very fast change around November 2011, and went downhill. it would be like being in a constant haze. When I tired on contacts for the first time this year in April, it was like coming out of the fog into the light. And now it is the only way I can see.

It's been very hard for me because of how it happened. And then knowing that there's nothing that can be done to fix it. I'm also trying to get back into university to finish my degree, which is tied to the work that I do, the IT field, I find myself when I'm out in public to just watch people. I stare off into space for no particular reason. I spend many sleepless nights thinking about how much I have to rely on wearing my contacts to see. This past week, I just got my 1st and second replacement of contacts because on the good eye/left I lost it for the first time and the bad eye/right, I broke the 1st replacement lens I had just gotten that same day . I had to wait about 3 weeks for the replacements and I felt like I was in Hell because I was back to where i was before seeing again...the haze.
into the light.

It's hard dealing with two conditions that are affecting my vision. And even with the neuro-opthalmologt saying that the arthophy won't get any worse, on the other side is the keratoconus. There's the possibility it can get worse, which in turn could make my vision go from partial blindbess to full. And to add more, I have spinal issues that can affect my vision as well. I'd like to know, how do you all handle it? What keeps you all from just turning crazy mad? I have had a couple of breakedowns about my vision. it wasn't in public. I don't know. I'm just hanging on a thead....


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Hi everyone! I have recently been diagnosed with Optic Nerve Atrophy. I am still driving - barely - and reading, but my vision declines every day. Any information you can give me on this condition would be so appreciated - links to websites, reading material, etc. I am sooo glad I found you all !


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hii dora, my name is rose i would like to inform you that i have RP and optic nerve atrophy.please just accept the condition. as at now there are some trials on gene therapy hopefully we may find treatment for the RP.thank you


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Hi, my name is Kim, I am a 44 year old mother of 4 and was born with optic nerve atrophy. I work full time outside the home and can drive during the day with glasses and can use bioptic lenses for driving at night if I need to go out when it is dark. I was born with this condition so I do not know any different. Luckily my children do not have this same condition. There are so many aids that can be used to help you see what you need to see. I work on the computer, read books all the time and really get along just fine. I would love to "chat" with all of you as there really is nobody that truly understands what it is like not being able to be able to see everything that you want to!

my e mail is miller3028@sbcglobal.net if you want to contact me that way. I am here to tell you though that life can still be GREAT even with reduced vision!

Kim


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I have Optic Nerve Atrophy. I was diagnosed at 5 yrs old. And, I am now 40. I have been looking online for support groups. And, came across this. I can drive during the daylight , also. But, some people just don't understand. No matter how much I explain the disease to them. They'll keep asking the same questions. For instance, isn't there any operation for it? It is so frustrating. Is there anyone out there that has experienced this. Thanks, Amy


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YES Amy!! They all wonder why it can't be fixed. It is frustrating but so common! Do you use bioptic lenses at all to drive? I got mine for night driving about 5 years ago. Kim


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I am interested in the Bioptic glasses. I have not heard of this yet. I am daylight only driving now. IAny info would be great. Also, I'm going to start an Optic Nerve Atrophy Group on Facebook if anyone is interested.


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Hello sharthor:

Here is information I compiled/edited on VisionAware.org about driving with low vision and bioptic driving. I hope this is helpful.

http://www.visionaware.org/section.aspx?FolderID=8...

Maureen Duffy
Social Media Specialist
VisionAware.org


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Here is another website with information on low vision driving
http://community.albinism.org/forums/
There is also a Dr. group in Indiana that has a really good site with great information.
http://www.eyeassociates.com/images/bioptic_drivin...
you may have to copy and paste this as I am not sure how to make it a link.
If you have questions I would be happy to help!
Kim


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My daughter has optic nerve atrophy from Hydrocephalus squishing her optic nerves, now blind in both eyes. Her eyesight is 20/1200 and I am wondering what all of your eyesight numbers are? Please respond if you can, what do people see with this 20/1200 sight. See, my daughter has Autism so she doesn't talk at all. She can't see her toys to play with, she walks into walls/doors etc., but I think she can see light at times. Please let me know your sight number and what you can see with that ie, 20/? Thank you, Christie


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I have a close friend who was just recently diagnosed with this and I am surfing the web to try and learn more about the diagnosis and connect with others who have it so that I can help her cope. Please feel free to email me at trish@cornerstonecottageky.com...i am desperate to find help.


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Hello Trish: This is Maureen Duffy, the social media specialist and blogger for VisionAware. In order to answer your question more fully, I will need more information, some of which should not be in a public forum, such as this discussion board. Can you please write to me at mduffy@afb.net and we can discuss further? Thank you!


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