Optic Nerve Atrophy

Posted by Godangel on 4/24/2012 at 9:56 PM

Dear readers I am a 39 year old mother of two children and I am living with optic nerve atrophy in my left eye which keeps changing positions at least once per month. I get depressed every time the eye changes to the left because I think it looks funny. I really need to talk with people who understand what I am going through. Just some moral support and encouragement. I feel very alone.

There are currently 5 replies

Re: Optic Nerve Atrophy

I hope you're still looking at this message board! I have the same condition and would love to talk about how my vision changes day to day.

Re: Optic Nerve Atrophy

I know how you feel. I have optic neuropathy or optic nerve atrophy in my right eye. It was happened due to trauma I had 2007. The nerve is completely dead. It's bad enough because I have keratoconus and I have to wear RGP hard contact lenses. The funny thing about it is some software wear my contacts, my right eye has been trying to see, which I find so amazing.

Even though the trauma happened to 2007, it wasn't until last year when I started losing vision very severely over a three-month period. From going to two eye doctors, I was referred to a neuro-ophthalmologist; that's when the diagnosis of keratoconus was confirmed Alan I found out about the optic neuropathy. It's a very hard on me because I had to stop working. I'm trying to get… I'm trying to keep things straight so I can go back to school to finish my bachelors degree and then hopefully go to graduate school was going to be hard about it is that my degree is in computer science. I haven't driven in four years.

Godangel… There are nights were I to stare at the wall. There are days that go by when I don't even turn on the TV. That even days when I don't even put my contacts in, because it lets me know… What I have to deal with. And it's hard… Very hard

Re: Optic Nerve Atrophy

Hello, I also have optic nerve atrophy that is hereditary. I would love to chat with you if you are still looking for support. There aren't many people in our situation or that know what it is like to not be able to see well! I am a 44 year old mother to 4 boys. My e mail address is miller3028@sbcglobal.net if you ever need someone to talk to that know what it is like!

Re: Optic Nerve Atrophy

Hi, I have optic nerve atrophy as well and was diagnosed at age 16. I am now 47. I would love to keep in touch with this. I have just started an Optic Nerve Atrophy support page on Facebook as it is so much easier to chat back and forth. I'm tired of searching the internet for people to talk with. If you get a chance, stop by. https://www.facebook.com/OpticNerveAtrophySupportP...

Re: Optic Nerve Atrophy

At the end of December I went to see a local eye doctor because I was concerned that I might be having some retina issues. He said, "I don't see anything acute. But you can call us if something changes. Your gel is starting to separate from your retinas...." I thought, these eye doctors can be real non-compassionate and quirky. That prompted me to do more research. I have optic nerve atrophy and cone dystrophy. Do any of you have the combo? I did a search to pull up the top eyedoctors working with our condition. I emailed Dr. Henry Kaplan in Louisville. He quickly emailed me back and said to check into the following places for advanced medical work on Optic Nerve Atrophy: Boston eye infirmary and Bascom eye in Florida. I just sent a snail mail to Bascom in Florida. I am hoping they will reply with a positive bit of news. Best wishes to all of you. If you feel like corresponding you can reach me at: Kansassunflowerfriend@yahoo.com
-Linda