[Menvi-discuss] Update On Me

Thu May 10 21:11:58 EDT 2012

Dear Chela,

First off, let's not discount the benefit of 
light perception.  Mine comes and goes and I can 
assure you that all steps I've taken to date, 
which have been lengthy, tedious, and expensive 
are worth it when I can, just every now and then, 
make out a window frame or the coffee 
maker.  It's like there's still a connection to 
the visual world, meaning hope for the future.

Second is the question of whether you've ben 
blind since birth or had the benefit of 
developing your visual cortex from say age 0 to 6 
or 10 or so.  If your brain knows "how to see", 
developed during this early age, then this would 
be an argument in favor of preserving your "good" eye or both.

Also, if your optic nerve is intact, that would 
be another argument in favor of preserving your "good" eye or both.

Finally, see at least 3 specialists before making 
an irreversible decision such as this.  I think 
you're in California so your very best 
opthalmologists are likely to be in San 
Francisco.    Spend the time and money to make 
the trip because a year from now, you'll have 
forgotten the money and the time but the decision to go prosthetic is forever.

While it's true that occularists paint very 
convincing prosthetic eyes (I've had the same one 
since I was 10), they tend to weep or dry a 
little.  Probably nothing like the pain you're 
going through now though.  As for popping them 
out at parties for conversation, I've found the 
shock value to be somewhat traumatizing to the 
non-initiated.  So that's not a benefit.

Each of us has different circumstances and 
prognosis with our eyes.  The strategy that I've 
always pursued is to maintain as much function 
and natural tissue as possible so that when new 
therapies, stem cell regeneration, and even eye 
transplants hit, you've got the best chance of taking advantage.

One of my best eye docs, a world-class respected 
opthalmologist in New York City predicts 20 years 
to stem cell success, and another 5 years for eye 
transplants.  So he still thinks the stem cell 
stuff is a long way off, at least for 
glaucoma.  I think we're much closer for 
retinitis pigmintosa and macular regeneration.

But closer stilll are higher resolution 
artificial retinal implants if one can preserve 
the retina.  Barring a functional retina and 
optic nerve, there's some exciting work going on 
at Monash University regarding a direct to brain 
bionic eye.  They're looking at the first human 
implant in 2013 and possible commercial 
deployment within 5 years.  The Monash 
direct-to-brain bionic eye is particularly 
interesting because it augments, but does not 
require a functioning eye or optic nerve.

All of these biologic regeneration or artificial 
vision ideas pre-suppose the brain knows "how to 
see", developed between about age 0 and 6 to 10 
years of age.  The jury's still out on whether 
artificial vision can be interpreted by a brain that's never "seen" before.

Finally, many of you may have heard about the 
"Brainport" tongue stimulator which captures 
images from a glasses-mounted small camera and 
"paints" the light and dark image on the tongue, 
a sensitive part of the body.  I'm in a clinical 
trial for this device, and although I've been 
discouraged from discussing results publicly, I 
can say it's not a panacea.  They, like Monash 
Vision Group, have iterations to work through, 
filters and smart learning algorythms to apply, 
higher resolution to achieve, and most 
importantly, human factors issues such as 
appearance and comfort to improve upon.

In sum, I guess I'm not offering prayers or 
empathy, but the best scientific knowledge and 
advice I've been able to gather over the last 
several years of my own experience going 
blind.  Do the work to see the specialists, 
ideally at least one in San Francisco,and then go with your gut.

By the way, I have one prosthesis and one 
biologic eye, now blind from glaucoma.  Rational 
or not, I feel the biologic eye, if we can just 
keep it limping along, has the best chance for rescue/regeneration.

Hope this helps,

Ben

At 03:51 PM 5/10/2012, you wrote:

>Greetings,
>
>As you may recall, I told you that I have some 
>eye issues: burning hot sensation, feels like 
>sand in my eyes and itches
went to the 
>opthamologist on April 12, found I have light 
>perception only in my right eye now whereas it 
>used to be in both, then was referred to an eye 
>specialist for a v scan which is an ultrasound 
>on my eyes where I went Monday, now just went 
>back to my opthamologist to see what he says.
>
>Well I have some bad news regarding my eyes. I 
>have to make a decision about whether or not I 
>can live with my eyes the they are, or to get 
>prosthetic eyes, due to the fact I have Phthisis 
>eyes, but am now being referred to another eye 
>doctor to confirm and suggest what needs to be 
>done, and the thought of getting prosthetic eyes 
>doesn’t set well with mom and the fact that God 
>would not be able to heal them if my eyes are 
>removed is something to consider prayerfully 
>what I can and cannot deal with, whether this is 
>annoying or whether I need to have them removed. 
>Please join me in prayer for this reason
I see 
>the other doctor June 8th at 1:20 PM.
>
>Thank you for your support.
>
>Phthisis bulbi is a shrunken, non-functional eye 
>that results from severe ocular disease, inflammation, or injury.
>
>Sincerely,
>
>Chela Robles
>
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