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Blind and Visually Impaired Community

Full History - 2018 - 12 - 30 - ID#ab0d97
6
Scar tissue on the optic nerve (self.Blind)
submitted by [deleted]
[deleted]
B-dub31 3 points 4y ago
I (40, M) have bilateral optic nerve atrophy due to intercranial hypertension caused by a blood clot in my brain and made worse by acute internal bleeding when they gave me blood thinners to treat the clot. My sight loss began in August 2016 and I was declared legally blind a few months later. My experience sounds very similar to yours. I have pretty much no usable vision in my left eye (I see light and color, but basically no detail) and I have blind spots and intense visual snow in my right eye. I see static of multiple colors, along with random flashes of various colors (yay, fireworks I guess?!?). I even see the static with my eyes closed. I also have pretty much zero vision in low light. I no longer drive and can’t read much other than digitally magnified text.

If you haven’t seen a low vision specialist, you should. They can recommend assistive technology and set you up with orientation and mobility training. Luckily, I have enough usable vision that I can navigate by sight (mostly), but I’ve ran into people and things much like you describe and it is embarrassing. I use a signal cane in crowded environments, not so much to navigate, but to communicate my partial sightedness to others.

My opthalmologist is a researcher and is plugged into the research community internationally. He is fairly confident that there will eventually be a treatment for optic nerve damage. He told me to watch for any news regarding treatments for spinal cord injuries, because those same developments may be applicable to optic nerve damage.
[deleted] [OP] 2 points 4y ago
[deleted]
B-dub31 2 points 4y ago
I was on lovenox when my bleeding occurred. I came pretty close to dying. I found out I have a genetic condition which causes a lack of anti-clotting factors, so I’ll be on blood thinners for the rest of my life. I have a venous sinus thrombosis, which after a year and a half of treatment, is still there. I go back to the neurologist in a month for more tests. They’ve mentioned surgical removal or inserting a shunt. Either options sounds like it sucks... it sounds like you have been through the wringer. I hope things get better for you. It’s hard being able to “see” but really not be able to see.
[deleted] [OP] 1 points 4y ago
[deleted]
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