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Blind and Visually Impaired Community

Full History - 2019 - 12 - 24 - ID#eey4bs
26
Not so happy holidays: a bit of a rant. (self.Blind)
submitted by Balthier1234
Recently I had my 10th eye surgery, they removed a severe cataract from the right eye in an attempt to stop the chronic eye pain. And if this doesn't work then I am told the only options left are to remove the eye, or continue to deal with the pain.

The operation itself was a bit of an ordeal. The doctor started cutting before the pain medication and sedatives kicked in. But thats all over and done with, and I can get started healing and hopefully having less pain. Right?

At the post op exam I learned with the cataract gone, and drops to dialate the pupil I now have light sensitivity in that eye where before it was thought there was no living retina and that the optic nerve had atrophied.

While I still have minimal vision in the left eye (20/800 and a less than 30° visual field) for a while, early onset macular degeneration won't leave me with much. Any improvement in the other eye can only be good right?

So far that doesn't seem to be the case. No matter how many friends and family tell me how much of a miracle this is, and how excited they seem to be. I just can't seem to care.

With the minimal vision in the left eye, having light perception in the right doesn't make a positive impact. All it means so far is constant pain from even moderately bright lights, more eye strain, more eye strain induced migraines, and a lingering feeling that I'm an awful person for not appreciating this 'miracle'.

I'm already sick and tired of having to smile and nod when told how great this is, and how "doesn't this mean you can get a new prosthetic eye to fix it?" And then having to say yet again that the technology isnt quite there, even if it was I could never afford it, and thinking that family and friends were past thinking of me as someone who needs fixing.
OutWestTexas 11 points 3y ago
I understand exactly where you are coming from. It is very frustrating. Sometimes family gatherings make my head want to explode. Is there a sympathetic family member that you can hang out with who could run interference for you?
Balthier1234 [OP] 5 points 3y ago
Not really, I'm glad things are relatively low key compared to previous years though.
razzretina 7 points 3y ago
Family and friends, much as they love us, don’t always get it. You have every right to feel the way you do and, honestly, if light perception in that eye is of no benefit and actively causing you pain, why keep it in? That would certainly stop them from constantly asking when you’ll get more vision out of an eye that physically can’t do that. As for this being a miracle...well, some miracle if it’s actively making you feel worse.
8i8oio 5 points 3y ago
People DO NOT understand how painful light is. There’s is no other example (unless breathing hurt, maybe) but ppl just don’t grasp it. At all.

I would just get rid of the eye. You can think better when you aren’t in pain and decide how to deal with family then. Or try an eyepatch if you haven’t already.

Light is a curse in my life since March, and it’s only UV light. Getting that one new symptom has changed EVERYTHING in my daily life, and it’s been horribly overwhelming. More than surgeries, or any other symptom I’ve had.

So you aren’t crazy. You’re dealing, and it sucks.
Balthier1234 [OP] 3 points 3y ago
I was given an eyepatch to wear for a few days during recovery, but I've been wearing it almost constantly. I have to get one thats meant for constant longterm use though.
MostlyBlindGamer 4 points 3y ago
I understand how you feel. My left eye has been no more than a bad piece of decoration for many years. I won't ask anything more of it, if it doesn't bother me either.

It's especially hard to deal with people who don't understand, around the holidays.

I hope you still manage to hang on to the good things. At least we can enjoy good food with the curtains drawn and the lights dimmed, if need be, right?
Balthier1234 [OP] 2 points 3y ago
Exactly, at this point I dont really care if they remove it. Light perception or not, I just want the pain to stop.
MostlyBlindGamer 1 points 3y ago
In the meantime, the eye patch idea might be helpful. There's also no shame on wearing sunglasses at all times - they make you look cooler.

Is there any chance the light sensitivity well at least be less painful once you change the medication you're taking?
fastenedbrick25 3 points 3y ago
I recommend getting a good UV protection sunglasses to help with the light sensitivity.
Aida_Hwedo 4 points 3y ago
Also, DARK sunglasses. Off-the-shelf sunglasses only get so dark, but custom-ordered glasses for people with photophobia exist, and they can be a lifesaver.

If I may suggest a style, go with wraparound glasses! I have basically the most mild case of photophobia possible, and I find that regular sunglasses don't work for me--the light gets through at the top of the glasses. But wraparounds, which I kind of need anyway due to always wearing prescription glasses, solve that issue. (Also useful: a baseball cap or wide-brimmed hat.)
BlackieT 1 points 3y ago
Just wanted to note: my Dad had the removal of his eye on the table, due to sustained pressures in the mid 60’s, causing severe pain. Instead, they did a retrobulbar alcohol injection. The alcohol kills the optic nerve. That let him keep the appearance of his eye, even with zero vision. His vision is about the same as yours (before and after).



https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=10&ved=2ahUKEwjyi72JgNrmAhVRwlkKHc-DBgIQFjAJegQIAxAB&url=https%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F27814327&usg=AOvVaw1RWd8XZlVEDaNmr8L332Mz
[deleted] 1 points 3y ago
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