[blindkid] congenital glaucoma help

Mike Freeman k7uij at panix.com
Wed Apr 1 03:31:04 UTC 2009


Hi, Rosina.

I can give you two experiences: one is my own; the other is of my 
daughter although her case isn't strictly like that you ask about.

She is anophthalmic; that is, she has no eyes but did sort of have 
sockets. So she has hydroxy apetite (made from coral) implants in both 
the "eye" sockets; tissue has grown over these and she has shells. She 
has no dryness problem; in fact, sometimes, it's the opposite problem --  
excess mucus, especially when she has a cold. However, this can be 
managed.

My own case is a bit unusual; I still have one eye although I barely see 
a bit of light out of it anymore. Back in 1985, my right eye -- the one 
that saw the most -- swelled up with glaucoma and iritis. Apparently, my 
body attacked the tissue, thinking it foreign. WE were able to bring 
this under control and I still have that eye. But the other eye also 
started acting up and the cornea kept breaking down (it was as if it 
continually got scratched); that rather stung a bit. In 1996, I elected 
to have that eye removed. I did not have a full enucleation, however,; 
an enucleation is the customary way of doing things -- that's where the 
whole eye is removed. Since the doc said I had a perfectly good eyeball, 
he chose to just remove the innards of the eyeball -- and 
evisceration -- leaving the eyeball intact and placing a silicone 
implant in it. He said that would initially bruise the face a bit more 
but would require less maintenance. In fact, I have done nothing with 
it; I could wear a shell but he said it was strictly my choice; from 
some distance away, you can't tell until you realize I have no iris or 
other eye structures.

I have had no eye troubles; no dry eyes or excessive tears except when 
the eyes get irritated (I suspect my body still thinks about attacking 
the other eye once in a while). I did have to have a bit of plastic 
surgery this last year to fix a drooping eyelid but other than that, no 
problems.

The eye felt so so so much better after I had it out that I could have 
gotten off the operating table and gone to work (I didn't but the pain 
was gone immediately).

Were I you and your child, I'd have *both* eyes removed *immediately!* 
Vision isn't worth pain. And blindness is no more than a damned nuisance 
and all the struggles people go thru to save vision that isn't much to 
begin with seems futile to me.

Yank 'em out and go on with life!

Incidentally, I'm told the retina of the removed eye had the consistency 
of pumice -- no *wonder* it pained me! (grin)

I won't go into the pros and cons of pegged versus unpegged shells; to 
me, it's strictly a matter of preference.

Hope this helps a bit.

Mike Freeman, President
NFB of
Washington

----- Original Message ----- 
From: "Rosina Solano" <colemangirly at yahoo.com>
To: <blindkid at nfbnet.org>
Sent: Tuesday, March 31, 2009 10:57 AM
Subject: [blindkid] congenital glaucoma help




Okay, please help me if you can. My oldest son has a severe case of 
congenital glaucoma.  He has had multiple surgeries.  Recently he has 
had issues with bleeding in his eye.  In the colored part.  He was on 
some drops but they have not been effective.  He does not have sight in 
this eye, but it is causing severe pain and light sensitivity in his 
other eye (limited vision).  The doctor is suggesting possibly removing 
part or all of the eye.  I am asking any or all of you that have been 
through this, what results you have had with this.  Is all or part of 
the eye better?  What are the pros and cons you have experienced with 
this.  My son is very nervous about the whole idea of losing part or all 
of his eye.  Understandably so.  We know that he does not have vision in 
it, but is there a problem with dryness of the socket if all is removed? 
Or do the implants extrude if they only remove part?  Do you have pegged 
or non pegged implants if you have
 them? Basically I am trying to get all the information from kids who 
have actually gone through this.  My son is 11 and very worried, and yet 
he wants the pain gone as well.  We are very conflicted as the research 
we have done is very scary.  We would like to have some feedback from 
actual kids or patients. Has anyone gone through this?  Please 
help;Rosina



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