I have a 2 yr old with micro in the left eye. My husband and I are having trouble with doing the conformers are self and are wondering if surgery is the way to go. Has anyone gone the surgery route? If so what do you think about it?
Cindy-
As your son grows they will become easy to come out. We had to teach my son to keep them in. It wasn’t easy, but he eventually learned to leave them alone. He is now 19 years old and wears prosthetics.
Penny M
Hi, my son was 2 in Jan and he has uni micropthalmia. He had expanders until he was aprox 8 months and then he was fitted with a clear prothstetic.
Is this what you mean by conformers?
I call the expanders conformers when I was doing research they called them conformers. We keep having set backs my son can pop his out. and its not easy to get it back in right away. I don’t know if having the surgery will make it easier to move the whole process along.
cindy
My son Danny has micro in his left eye as well.? He did not have problems with his coformers falling out but he had his first prosthetic eye before he was 2.? His prosthetic use to come out if he was sick or had allergies because his eye would actually “puff out” a little bit.?
I kept thinking they needed to adjust it to fit, but it was just that we had to get the inflammation down in his eye.?
Will he eventually have a prosthetic, and can your ocularist add to the conformer to make it fit better?? I just hate to see you do surgery if it’s just a matter of fit.? Let us know, and let me know if you have any other problems/questions, that’s what we are all here for!!
Amy
Hi Tommy
You’re English is fine!? I was told that my 10 year old son had an “infection” in the womb and that it carried to his eye and it was just Luck that it didn’t travel to both eyes.? I’ve heard different theories and have read different articles saying it’s genetics, that it’s not genetics, I don’t think we have many definitives in this.? I’m curious about your eye; is your right eye smaller than your left??
My son Danny’s “real” eye, as we call it, is much smaller then his right eye, so he wears a prosthetic.? I’d be curious to know if your right eye orbit developed as much as your left without some type of conformer or prosthetic.? Any info you can give me would be appreciated!? And by the way, have lots and lots of kids!!!?
They’re great!!!
Hi everybody.
My name is Tommy Im from argentina and Im 30. I sign up here because i have micro in my right eye, obviously since I was born. Despite of the estetical issues I NEVER had any problem, I never used conformers nor prosthetic… Prosthetics were to uncomfortable to me, so when I was 12 I decided not to use it any more. I lived my 30 years in peace with my “lazy” eye. Im a lawyer and 3 years ago I got married. The only question Im still asking to myself is if there any possibilities for me to have a child with the same affection. This is an issue nobody could clear me. Ive asked to genetists, ocaularists an biologists and the only answer ive received is that there are too few possibilities to inherit uni microftalmia. Can you guys tell me anything about this? Is there uni microphtalmia a genetic mutation or is it just caused by an error in the eye development during pregnancy?
sorry about my english!! it sucks I know…
My son Rhys, 2 last Jan, Has had a prosthetic since he was 8 months and he delighted in flicking it out just because he could.It would be in and out at least 15 times a day.
A prosthetic is easier to put in than a conformer and its supposed to come out for cleaning daily.
We have had trouble keeping Rhys’s eye in for almost a year now and all the doctors could advise was to put boxing gloves on him. Yes they were serious!!! He ended up getting so upset over it we only put it in once a week and watch him like a hawk until its out.(about 2hours)
HOWEVER this past fortnight we have turned the corner and he has decided to leave it alone and he lets me put it in every day.
I don’t know how surgery will help to keep your sons conformer in, and once you go down that road will you need more opps down the line?
I am greatfull my doctors didn’t offer surgery as I wouldn’t like to choose.
I have a 2 year old daughter that was born with Microphthalmia of the Right eye. Doctors believe she has “residual vision” or Limited sight in that eye so we have been doing all that we can to ‘spare the vision’ in that eye.
Before she was 1 she had a conformer, which was just a clear shell that went over her small eye. I believe it is also refered to as an expander. This was a pain because she would fight us when we would go to get it in (took the two of us parents during this process). She never got use to it either, even after a few months, but doctors told us we needed it to prevent her facial features from becoming deformed (since the 2 eye sockets were growing at different rates, her right side would begin to pull down, etc.) Well after a while with the clear conformer, we noticed her eye was getting red and irritated underneath the shell. We even refitted her and got a new shell (or conformer). This didn’t help. We were told that because of the limited vision, the shell was irritating the iris and were told to just leave it out. She has been without a shell (or conformer) for over a year now. Her face is fine. She now wears glasses instead. On the glasses, left eye is just clear glass and the right eye (for the small eye) has a massive script (I think for +5!) This helps with the illusion of having the same size eye since the script magnifies the small eye a tiny bit. However without the glasses, she looks like she has a lazy eye.
I haven’t been to any specialty doctors since we stopped using the clear prosthetic shell. I plan on taking her to a regular eye doctor in a few weeks to have an eye exam since she is speaking alot better and can somewhat tell you what she is looking at (colors, animals, etc). I still do not know if she has vision in the eye or if we are going to go back to wearing the clear shell.
Is there anyone else out there that is dealing with micropthalmia with limited vision? How did you proceed??
Hi, my name is Brian. My wife and I have a son who will be two this coming September. We were told very early in our son’s life that he has a microphtalmic right eye and that eventually he would need a prostetic eye to ensure that his the orbit of his right eye would grow in proportion to the left one. That day is quickly approaching as our prosthetic technician will be taking a form of his right eye so that he can create the prosthetic eye. Our concern…how are we going to put this thing in. I mean, I know the technician will show us how, but how are we going to do this on a daily basis. I have to admit I get watery eyes just looking at a Visine comerical on tv!! Does anyone have any advice or tips to make this soon to be new routine an easier one? Please help.
I’m new to the group & have never met anyone who is familiar with micropthalmia. My daughter is 15, from age 1 to 5 she worn a prosthetic shell-made by an occularist- it fit over her micro eyeball, it was large-to help the orbit socket grow. It was a nuisance, but she endured it for 4 years. When she complained about discomfort at age 5, a new shell was made. This was again uncomfortable, so the opthomologist suggested to discontinue the use of the shell. We were lining in Florida, since then we moved to VA, and NC- and the opthamologists have never mentioned using the shell again…
What is a conformer? When surgery is mentioned by other members what are they referring to? Removal of the eyeball to fit a full prosthesis? Her opthamalogist mentioned that at some point in her life, the micro eye may become painful & need to be removed…is this why members are talking about surgery? Also, she recently (2 years ago) had a shunt inserted to keep the eye pressure lowered, because her pressure was high. I welcome all comments…
I’m new to the group & have never met anyone who is familiar with micropthalmia. My daughter is 15, from age 1 to 5 she worn a prosthetic shell-made by an occularist- it fit over her micro eyeball, it was large-to help the orbit socket grow. It was a nuisance, but she endured it for 4 years. When she complained about discomfort at age 5, a new shell was made. This was again uncomfortable, so the opthomologist suggested to discontinue the use of the shell. We were lining in Florida, since then we moved to VA, and NC- and the opthamologists have never mentioned using the shell again…
What is a conformer? When surgery is mentioned by other members what are they referring to? Removal of the eyeball to fit a full prosthesis? Her opthamalogist mentioned that at some point in her life, the micro eye may become painful & need to be removed…is this why members are talking about surgery? Also, she recently (2 years ago) had a shunt inserted to keep the eye pressure lowered, because her pressure was high. I welcome all comments…
I have microphthalmia in my left eye. It’s completely closed. I’m 38 years old and from Ireland. I never wanted to wear a prosthetic eye or get eye surgery. As a child I kept deferring this. Ever year I would dread my eye specialist visit. I probably drove my parents mad. As an adult I attempted to do something about it. But couldn’t handle the prosthetic.
I think about it every day. Some times I get depressed about it. Mainly it’s stares and comments from others that get to me. These happen out of the blue and just hit me hard sometimes. Mostly I’m ok with it. Sometimes I regret not doing anything about it, but other times, I say to hell with every one else. Why should I change the way I am, just to suit others.
I’ve lived and worked in the UK, Australia, the Carribbean, France and Ireland. I’ve travelled other places frequently with work. I’ve a beautiful wife and 2 beautiful daughters. And Tommy - they have the most beautiful eyes. So don’t worry about. I was terrified in case I’d pass something on to my children. But thank God, everything was ok.