I have microopthalmia-brand new here

[Cassie]

I hope it's ok that I post here. I have micro-opthalmia in my left eye. I've been looking for a forum to discuss micro., but they are few and very far between! I'm not a parent of a child afflicted with micro, but I do have 2 boys, ages 6yrs and 10 mos. Both have normal eyes. (It was the 1st thing I asked about as soon as they were born).
I'm 36yrs old. When I was 3yrs, I was adopted to my aunt and uncle. They had military benefits to help take care of my medical needs, concerning my eye. I didn't get conformers (and socket stretchers) until I was 3-4yrs old. I also had 2 reconstructive surgeries as a child to 'lift' the eyebrow, lessen the eyelid, and even an eyelash tuck(inverted). I had stock eyes until I was about 12, I think. Then, I finally got a customized eye that fit like a glove and even had some movement. My current eye is 3yrs old and has the most mevement of them all.
My eye is lacking the pupil. It has the blu-ish/gray iris, the size of the pupil. The eye, itself, is about 1/2 the size it should be.
The last few years it has been causing me problems. I had to have a glaucoma test before the last eye was made, and found out that I had glaucoma. The reading was 21, not too bad, but found out why I was having headaches. I was told by the opthamologist surgeon that I would eventually need to have it removed (in the next few years). I also have chronic yellow discharge in the eye. When I wake up in the morning, it's either sealed shut, or stuck open with yucks. I have to pry it open with a wet washcloth.
I think the time has come to have it removed. I finally went to a local opthomologist the other day, and the reading was 45-49. I've been having migraines constantly.
I've had several surgeries in my lifetime (11), and I'm usually not too afraid, but this one has me a bit rattled. I understand it's painful (like most surgeries, I guess). I guess I feel I shouldn't mind removing a useless eye, but I've had it all my life, and frankly, I'm 'attached' to it! It's been a part of me all my life. I'm also concerned about having to make a new prosthesis. I'm afraid it won't have as much movement. I can't afford the coral implant with the peg. I have no insurance, so I'm afraid I'll have to settle for less than I feel comfortable with.

I'm going to call my ocularist in Albuquerque (Roy McDonnell--he's great--he also wears a scheral shell due to injury) on Monday to inquire as to my options. I didn't feel comfortable with the local opth. surgeon I saw the other day, so I'm going to try to get a referral to the opth. surgeon I saw 3yrs ago in Albq, NM since he works side by side with my ocularist. I'm not looking forward to another surgery, and not losing this eye. I feel like I'm going to lose a part of myself.
Have any of your children here had to have an eye removed, due to glaucoma or the eye deteriorating, resulting in loss? I'll probably be looking at having it removed in the next month or so.
Again, I know this forum is for parents with children afflicted with micro and like, but I've always wanted to find a support network of others that know what I'm dealing with. I have never met anyone else with the same condition.
Some of the posts here sure reminded me of all the stories my Mother told me about, when I was little.
By the way, I saw some of the children's pictures here, and they are just adorable and so precious!
Cassie

[ohbilatmicromom]

Hi Cassie
Thanks for you post! Its nice for us parents to hear from someone who has firsthand experience. My son has bilat micro and also has glaucoma. Apparently, this is a common ocurrence in microphtalmic eyes. Our issue is he has some useful vision in his right eye so our surgeons are trying anything and everything to try and save it. Since his left eye does not have any vision that is what they call a "test" eye. My son was diagnosed with glaucoma this past June right before he turned 4years in August. He is on 3 differenty types of eye drops for the glaucoma (timolol, iopidine, & xalatan) and has had 2 laser surgeries on the left eye. He also has yellowish discharge, but since the drops it has not been as much. Usually worse when he has a cold. I am just wondering why the eye has to be removed from the glaucoma? We are aware that during his surgeries he could have retinal detachment or other damage that would cause enucleation, but not just from the glaucoma itself. I am struggling with this very decision right now. They want to do endoscopic surgery on the left to see if previous laser surgeries were effective and see if its possible to do laser on the right since that eye has vision. So my struggle is knowing the risk of him possibly losing his left eye, is it worth it to try and save what vision he has in the right. He is still legally blind with his confomers (which are clear) and his glasses. Are we putting him through unnecessary procedures or is it worth it. Such a tough call. I am just wondering why the opthalmologist has not tried any meds for your glaucoma treatment. I know they aren't making jalen's glaucoma better, but right now its maintained, his pressures aren't getting any higher and damage is occuring slower. So at least they are slowing the progression down.
I can't imagine what that choice must be like for an adult since I know its difficult as a parent to make.
My son also complains of headaches and I thought he was just a tylenol addict, but apparently headaches are common with glaucoma. His pressures in June were as high as yours, now they are 23 in the left eye and 31 in the right eye. So, they have come down. However, we are told that there really is no accurate way to measure pressure in a micropthalmic eye. They look at the cupping of the optic disk to see damage. However, since you don't have vision in that eye, not sure what they look at?

Good luck with your decision!Thank you for sharing.
Michelle

[Cassie]

I decided to get a 2nd opinion yesterday at a different Opthamologist, and he did another pressure test with a different piece of equipment and it was considerably lower. My good eye was 18 and my micro eye was 28. He said what you said (that I hadn't heard before)--that it is difficult, if not impossible, to get an accurate pressure reading. He told me that with a micro eye, pressure reading mean squat in a non-functioning eye, when pain is involved. Since I will never have vision in that eye, the sensible option is to remove it, to be pain-free. He said there was a temporary fix to deaden the nerves behind the eye, by injecting pure alcohol behind the eye, but it wasn't really a viable option.
He told me that he wouldn't be the one to remove it, as he doesn't have the cosmetic background to feel comfortable enough to remove it and put in an implant in, in the way the specialist in Albuquerque (the same Dr. I saw that 1st diagnosed the glaucoma) would be able to do with his eyes shut. So, I have to do some calling to do, to check into county funding, since I don't have insurance. So, he verified that fact that it needs to be removed in order for me to be pain-free. He said the pain dictates this, not the pressure reading.
So, in your little boy's case, when he starts to complain a lot about his headaches and they don't ever go away, it time to talk to his Dr. about your options. For all I know, I might have had glaucoma for several years, before I ever linked the headaches to it. It may take years before he ever gets to this point. I don't know. Just keep listening and watching, that's all you can do.
I did try the timolol but it seemed to cause more problems than what it was worth, for me.
You might bring up his tylenol usage with his Dr. and see what he says.
Thanks for responding.
Cassie

[ariana4]

Hello, I'm yerinita. I'm the mother of a 7-year old with micro-opthalmia in her right eye. She has always been a healthy child besides the vision problem. She is getting more headaches and she's complaining about eye pain. She is now having seizures. This is weird. I am looking into finding out if children with micro are candidates for a cornea transplant. This would of course have to come from a donor but if the surgery goes well she will have vision in both eyes. I hope this doesn't sound like wishful thinking. I just wanted to help with other options. You can reach me directly at redeem01@sbcglobal.net

[Cassie]

I don't know about corneal implants. I know in my case, it wouldn't work, since I have no 'window' into the eye (no pupil). I had always thought about that growing up, wondering if they would come up with an eye transplant or something. My optic nerve is still attached, but is damaged from the glaucoma (that's what happens with advanced glaucoma).
I'm trying to remember what the cornea does. I get it confused witht the iris.
Good luck in your research. Best thing to do is call your child's Dr.
Cassie

[allie]

Hi,
I'm new to this website. But I also have a 4 year old daughter with a micro left eye. She currently wears a scleral shell, but the past four years have gone from hell to manageable! We live in California and I would love to chat with anyone from parents of children with micro or adults with micro. After reading Cassie's post I was glad to read that my daughter can someday have her own children and might not pass this on to her kids. That was a big worry of mine since she was born. Thanks.
Allison
allison@triprecision.com

[Conni]

Hello. My name is Conni and I'm new here too. My daughter, Shannon, is 11 and has micropthalmia of the left eye. She also has a partial coloboma in her right eye, but has near perfect vision in that eye!

Lately, Shannon has developed a habit of rubbing her left eye. She says that it bothers her. No pain, but itching. We are giving her allergy drops several times a day, and treating with a steroid antibiotic, but it has improved only slightly. It's really a problem during the school day, because she doesn't want to be seen with her prosthesis out, but has a desire to frequently remove it because of the constant itching.

Has anyone else experienced this?

By the way, we have two completely healthy sons, ages 13 and 9, and it is my understanding that this condition is usually randomly genetic, not familial. But I also understand that genetic testing can be done, and maybe this would help you to determine if this could be a problem or not for the next generation.

God bless each one of you, and thank you to those micropthalmia patients who have written in. It's great for us, as parents, to hear from you. You all sound so well adjusted and hopeful! We so appreciate the encouragement that comes from this.

Thanks again - Conni

[MsTiffa]

Cassie does she have pink eye? I use to get that a lot when I was younger. My doctor use to tell me to put neosporin on the outer lid and that usually cleared any bacterial thing I had. Btw, I'm 36 years old and my left eye that I wear my prosthesis over it and it's doing great.

[Cassie]

I know I would have itchy eyes a lot. I think it was the fact that it was dry. The prosthesis causes dry eye, since it is a foreign object and the body doesn't always like it. Keep artificial tears on hand and use them often. That might help.
I had pink eye some. I don't know if it was more often than other kids, but I did have it. I do know that whenever I was about to get a cold or something, my eye would gunk up. It was like my barometer of sorts. It told me if I was about to get sick.
Well, I guess I can say I no longer have micropthalmia. I had my eye removed 4 days ago. It still hurts like the dickens. I haven't been afraid to use the pain pills! It's hard to move my good eye, because the new implant (swollen tissues) rubs up against the new conformer. My eyelids are swollen and black and blue and has turned my eye lashes inward, causing rubbing. Am I complaining??? I know it will get better, but I guess I was expecting it to feel a bit better by now. I'm being a bit mental right now. Even though, the eye I had was diseased and painful, it was mine. Now, to not have it and have this weird looking thing I see in the mirror, when I change the bandage, I'm just trying to adjust to it. I kind of grieved for it last night. I felt silly getting emotional about it. You wouldn't think something that caused all this, would have me mourning it, of sorts!!! Oh well, I'll adjust. Once it heals some, I'll feel better about it. Once I get my new shell, I'll probably really feel better about it. The Dr. wasn't able to put the size implant he wanted in. The muscles in the micro eye were small, since the eye was only 30-40% normal size, so he had to work to get the muscles attached to the implant. So, he used a smaller one. Hope that doesn't affect the new prosthesis.
Hoping my headaches will be a thing of the past! Right now, they are worse than the worst days with the eye, but that shall pass, I'm sure. I can't wait!!!
Cassie