The following posts from the ROP list concern the use of prosthetic eyes for people with ROP. This is a very personal issue, and some people have very strong opinions on it. Feelings about the necessity of prosthetics vary widely. The ROP list was moderated by Dr. Scott Richards until August, 2002. The list has closed now. For more information about lists of interest to people with visual impairments, please visit the email list index.
Date: August 28, 1998
From: Sarah J. Blake
Another thing I've heard about the scleral shells is that they do have to be reevaluated every year or so to make sure they still fit correctly. This info came from Randy Tronic in Dallas. He is a very well-respected ocularist. I went with a friend to her appointment with him after she had lost one of her prosthetics during a seizure. He made her new ones that fit much better and never popped out during her seizures. He also advised daily cleaning with Johnson's baby shampoo (no tears formula). Later, she saw my optometrist, who also does follow-up care for people with prosthetics. He gave her a cleanser kit which is very similar to a contact lens kit. She was having a lot of pain and irritation from her prosthetics because she hadn't been cleaning them regularly. The cleansing routine did wonders for the pain.
Date: August 30, 1998
From: Kae
I have two prosthetics and I decided to have them--one in 1975 and the other many years later. My decision was based on pain levels. My eyes were both non-functional, and because they weren't being used they atrophied. The prosthetics that are made nowadays can be very beautiful, and I've had people tell me, they didn't realize I had artificial eyes. The decision to have this done, was made, because I was (in the first eye) suffering from headaches and eye pain. What light perception I had was no longer. Based on these factors I opted to do the surgery. My right eye began to bother me two years later, and knowing that I didn't need to suffer, I went to my ophthalmologist who told me I had ulcers of the cornea. So, we opted to have the surgery. I truly respect you, for your love and concern for your daughter. Take care and I'll be praying for Rachel too.
Date: December 31, 1998
From: Phyllis Seyfarth
I'll try to touch on the main points of our experiences. Please let me know what else you need to know:
David's blind eye didn't seem to be growing and was a lot smaller than the other. It was always crossed, reddish in color, with a very cloudy cataract. People would turn and stare at him in the mall and other public places and it was beginning to embarrass him and we were afraid it would affect his confidence/self-esteem/etc.
First, we were told to try a scleral shell (like a very thick contact lens with a painted eye on top. This was a disaster. It hurt him constantly! So we gave up and went to an ocular plastic surgeon who recommended enucleation and putting in a donor shell to which would be attached an artificial eye. They also implanted porous "hydroxyapatite," a form of calcium phosphate which is the same mineral that forms human bone. This was supposed to allow for his own blood vessels and tissues to grow into it, including muscles, and give natural movement to the eye. However, in David's case, the muscles had badly atrophied and did not work, so the plastic eye always looks straight.
Anyway, this was done in June of 1996 (if David had been term, he would have turned 4 in August of that year.)
The immediate aftermath of the surgery was horrible. The temporary "shell" wouldn't stay in and we took him repeatedly back to the doctors for help. He and we were miserable for several weeks, till the healing got more advanced and the temporary thing could stay put a little better.
He looks so wonderful now, compared to before, but his eyes don't work together. His real eye has nystagmus and is often crossed (he has a head tilt too), but the fake one always looks straight ahead, unless it's gotten twisted, and then it looks to the side.
Anyway, there are hassles with it, but most kids & grown-ups don't notice it very much--a slight eye problem (like Columbo's or Rumpole's) doesn't bother people much. But before, it was a nightmare. A kid in our neighborhood once exclaimed to David, "I just can't stand looking at you. Yuk!" And he covered his eyes and ran from the room. This kid was 8 years old then and is normally a really sweet kid. You can imagine how less-sweet kids reacted!
Anyway, David doesn't remember life before the eye. However, sometimes he says that we were mean to take out his real eye. He doesn't always believe us when we explain how sick it was and that it couldn't see. So periodically we have to cope with that, re-explain, and let him cry and grieve about it.
This is such a complicated story and I feel sure I've left out some important parts. PLEASE ask me whatever else you need to know!
THE BEST OF LUCK TO YOU.
Phyllis in the Deep South
Wife to Ray and Mom to Adam, 9, and David, 6
Date: Dec 31, 1998
From: Phyllis Seyfarth
I didn't address some of the questions that Timothy/Joanne Cooke asked, and now I'll try:
David's sighted eye seems about the right size to me, but I'm no expert.
Every so often (say once a year) the ocularist (person who makes artificial eyes) somehow adds onto the eye, making it bigger. He makes it bigger than his real eye and then waits till the real eye catches up and passes it. Then we do it again.
It's like they periodically re-size the prosthesis (eye) to match the other one.
And another thing that's always confused me: The plastic surgeon told us that the enucleation was a safer thing to do than the big-thick contact lens route because there's a syndrome called "sympathetic ophthalmia." If an eye is irritated and gets an infection, the person's immune system can attack the OTHER eye and cause it to go blind!!! Apparently this happened to Louis Braille, because only one of his eyes was put out and the other one went blind later.
THEN, he told me that if I had let David's red-looking, cloudy covered blind eye stay in, that it could have gotten infected, since it was so sick anyway, and he could have lost his sighted eye due to sympathetic ophthalmia that way!! I was SHOCKED when I heard this because his other eye doctors had never mentioned that.
I don't know if that made any sense. Maybe I've gotten the whole issue confused. But it did give me the courage to go on with the enucleation. (Though I think there's even a slight chance that enucleation can cause the same thing, though it's much less likely to happen than if they "eviscerate" the eye--don't let them do that because the risk to the good eye is much increased.)
Well, as I said, please let me know if there's anything else I can tell you.
Phyllis
Date: January 1, 1999
From: Phyllis Seyfarth
I wish I could explain this well but I hardly know what I'm talking about. But I'll do my best:
With enucleation, I believe the whole eye is taken out. However, with evisceration, some parts are left behind. The following is a quote from a discussion of eye doctors called "Enucleation vs. Evisceration," from OCULAR SURGERY NEWS, a monthly magazine for ocular surgeons. I've put the address at the end, but you may have to register with the OCULAR SURGERY NEWS in order to access this site (it's free).
Doctor #1:
"I try to do evisceration for everything I can, except when I suspect an intraocular tumor. The nice thing is its simplicity; it probably takes one-third of the surgical time of doing an enucleation. Obviously, because all the muscles are attached, the motility is good, and the patient rehabilitates a little more quickly... Have you seen or heard of sympathetic ophthalmia occuring with evisceration in the modern era?"
Doctor #2 answered: "I haven't run into sympathetic ophthalmia at all. In fact, often when I'm presented with a blind eye that's not painful or a traumatized eye where one would think about sympathetic ophthalmia, I'll recommend keeping the eye in and using a shell rather than removing it because I think the risk of sympathetic ophthalmia is very low."
Doctor #3: I have treated three patients with sympathetic ophthalmia that developed after the eye was not removed following trauma; however, I have not seen any instances of sympathetic ophthalmia after enucleation or evisceration."
Further on, Doctor #4 says: "It's been a long time since I've done an evisceration, and I've stayed away from them because of the fear of sympathetic ophthalmia."
This was in a 1996 issue of that magazine. If you want to read all of that article, please see:
http://www.slackinc.com/eye/osn/19962b/enuclea.htm
If that doesn't work, try first going to their home page and registering:
http://www.slackinc.com/eye/osn
Good luck!
Phyllis
Date: February 18, 1999
From: Lari Steed
My son, Zane, wears a prosthesis in his left eye. He "lost" that eye to an infection-endopthalmitis. Though he still has his left eye, it is severely scarred, and not normal appearing at all. He first got his shell around Thanksgiving '97. I was so excited. He'd been scarred since May of that year and I was very tired of all the looks of horror we got. Everything went well for about six months. He kept it in 24hr/day. Then he figured out that he could take it out and teeth on it. Since then its been a challenge to keep him from choking to death! Seriously, that was my concern for a long time, but now I think he's doing it just to mess with us. He thinks its very funny when we start sweeping out his mouth. Now I call it his 'Sunday' eye, meaning, like Sunday clothes, we just use it on special occasions...whenever we're out. I used to think it would bother the members of our family to see his eye without the prosthesis, but just like the rest of this, they know that's Zane and they love him like he is.
As for the contact issue, we've been through that too! We tried using one in his right eye after he learned to fling his glasses off. But, like the prosthesis, he learned how to take it out. And unlike the prosthesis, it was very difficult if not impossible to locate. Each contact cost about $150, and after we lost 5 in less than 5 months, we gave up. But I must stress, this was only when Zane was 2 years old and showing NO signs of visually guided behavior. If we had believed it made any difference at all, we would've super- glued the glasses to his head. In the end, we decided that he had light perception at best, and that for light only, he didn't need corrective lenses.
Back to the prosthesis, Zane's looks great. Except for the teeth marks, it really looks real, and it moves realistically. His occularist is in Atlanta. Do you know if there is someone near you with a good reputation?
I hope this hasn't rambled too much. Its hard to say everything without saying too much.
Lari Steed
Mother of Zane 24wks 10/30/96
Date: January 13, 2000
From: Debra
I have a prosthetic as I had one eye removed. I also know about the shells. They have to be removed everynight just like a contact lense, but I hear they are comfortable after the initial break in period. Years ago when my vision was much better I wore contacts but when I got used to them I didnt know I had them on, that's what I hear about the shells.
Date: January 13, 2000
From: Missy
It is my understanding that once the retina detaches that the growth of the eye is effected. I have noticed that Daniel's eyes are small. During our last visit at UCLA, Dr. Schwartz mentioned that at some point we may want to consider "shells" to assist with the growth of the eye orbit and for aesthetic appearances.
Has anyone done this? I'm just looking for input before we go back for our 6 month checkup in March.
Missy
Date: January 13, 2000
From: Sarah J. Blake
My parents were warned of this when I was a baby also. My eyes are both a little bit small, but they are the same size. Without the shells, the eyes may appear closed, and this may or may not bother people. I have had one friend tell me that people say her eyes look better without the shells and others tell me they prefer to have normal-looking eyes.
Date: January 13, 2000
From: Missy
Thank you so much for your replies. I have more questions. What keeps the eye in the socket once you have used the shells to push the bones out? And does it look odd when the shells are removed? Also, do you think that it will be uncomfortable for Daniel since he is only a baby?
Thank you so much for your input.
Missy
Date: January 13, 2000
From: Diane Bell
Missy,
I was born 1 month premature and weighed under 2000 gram. I have always been blind in my left eye due to a cataract. I was told it was because my mother had measles while she was pregnant. Approx. 4 years ago the retina in my left eye became detached. The ophthalmologist tried to reattach it with a scleral buckle. That failed and he removed the buckle. Afterwards, because my eye shrunk considerably, I was fitted with a plastic shell that covers what is left of my eye. It is painted exactly the same color as my other eye. I wear it all day and take it out at night (sometimes I fall asleep with it) and doesn't bother me at all. I used to have pain in the eye while it was shrinking and you might ask about that. Otherwise, no one even knows I have this prosthesis.
I hope this helps.
Diane, lurking Oma (grandma) to Hope, 12/97, blind due to ROP
Check out our Web site
Date: January 14, 2000
Hi Missy, My daughter is 13 years old and she wears shells in both eyes. Her eyes are very small due to ROP. The occularist we used here actually does a mold of her eye and makes the prosthetic eyes from that so they fit her sockets. It took several visits to get them adjusted to the right fit. Without the shells her bottom eyelids hang and the top lids stay almost closed. One eye socket is smaller than the other but with the shells it is very hard to tell which one is smaller. She is having another pair made as the first pair has gotten a bit too small as she has grown and so have the sockets but the eyes haven't. (she got first pair at 9 years old.) For my daughter, the shells have greatly improved the appearance of her eyes. She wears them all day and takes them out at night. Sometimes she doesn't wear them if we are just staying home. Socially, people do not stare at her as badly with the shells but her good friends have all seen her without them and it is no big deal to them. Initially, she would have to let the doctor know if they bothered her anywhere and then he would adjust that part of the eye. Sometimes if she gets an eye lash or something else behind the shell it will bother her but she takes it out and rinses it with water and puts it back in. This solves the problem. Hope this was helpful.
Terri
Date: January 15, 2000
From: Penny M.
Hi! We have put Chandler in the scleral shells and think that it is great. Her left eye was considerably smaller than her right. She has been wearing the left shell for a month and we can already tell a big difference. She just had it increased in size last thursday. Although her right eye was good in size we put one on that eye also. More for cosmetics - it helps her to hold her eye open. You will be amazed at the difference. I was worried about Chandler being made fun of but not anymore. Dr. Capone had told me a while back that we could make her eyes look " NORMAL". I didn't realize how true that was until now. They are a headache to deal with but to me they are important & I will just deal with it.
Penny
Date: January 15, 2000
From: Penny M.
Its me again, Penny. Chandlers shells don't have to be removed every night. We only take them out if they are bothering her. Red eyes or watering..... She can get them out herself sometimes but thank god she doesn't do it every day.
Date: January 15, 2000
From: Penny M.
As the bones stretch then you have to increase the size of the shell until you get it where it is suppose to be. When Chandlers shell is out of her right eye the eye lid is closed. They also stretch the eyelids.
I am so thankful for them.
Date: January 29, 2000
From: Missy
Penny,
There is only one person in my area who does shells and he is not registered with the Natl. Assoc. of Ocularists (sp). So we are going with a company that comes into town every 90 days. Their name is D. Danz and Sons. They will do the molds for the shells and make the shells all in one day.
Now I have a question for you. You mentioned something about anesthesia? Maybe I'm misunderstanding the doctors, but they made it sound like the shells were something that was easily put in. They did say that the less they are taken out the better and most likely they will only need to be removed every 90 days when they are resized. They never mentioned anything about anesthesia or an OR. ugh.
Date: January 29, 2000
From: Penny M.
Hey Missy.
We had a guy make Chandler's shell in his office first. He DID NOT take impressions. I guess you could say that he just looked at her and went from there with his making of her shells. This was a nightmare. I do not suggest that you try this route. Chandler's eye did fine for about 4 hours but after that it started swelling. It took 3 of us to hold her down (15 mo. & 17 lbs) to get it out. We live roughly 100 miles from the ocularist and it was also 9 pm and his office was closed. I called one of Chandler's vision teachers & she gave me some numbers of other children in our area who had shells. They advised me to get it out.
Next, Dr. Drake sent us to Angela Cotton- who is wonderful to say the least. They did admit Chandler to Egleston as an outpatient & took her to the OR for impressions. They anesthesiologist then administered a gas by mask to put her to sleep. The same thing they did for her tubes a month later. Like I said before- it was not a big deal. I originally got sent to the first person because I requested that she not be put to sleep. Bad mistake. Knowing what I know now I could kick myself for making Chandler go through that awful experience. I don't know how they could take impressions without putting them down though because it takes 3 minutes for the material to set. It is similar to the things that they use at the dentist or orthodontist if you are familiar with that.
As for not taking them out but every 90 days. Chandler does wear hers for a few days at the time but just like a contact if your eye gets irritated the only thing that will help sometimes is to take it out. It sounds like they made you think that it was easier than it really is. Don't get me wrong, I am glad we did Chandlers and would recommend it to anyone. You can do it and you will be fine it just takes a little practice and hands on experience with them before you feel comfortable about it. Sometimes here lately I have been taking them out at night to let her rest and replacing them the next morning. It's easy to me now and it has only been 2 months. In fact, Chandler only "has" to wear one on her left eye but she wears one on the right eye for cosmetic reasons. Strictly for my benefit. I want her eyes to look as much alike as possible and as normal as possible. The one she wears for nonmedical reasons helps to hold her eye lids up. It is clear and makes her eyes look like the baby next door who has the beautiful blue eyes.
Personally, if I were you I might try to find someone closer to deal with if these people are only there every 90 days. You never know when you might need them. Just for a small problem not that we have had any since Angela but although she is 2 hours from us we can get to her if needed. Your ophthalmologist may adjust his shells if needed, I don't know.
I hope that I have helped you and that by no means have discouraged you. We did Chandler's shells without any advise. Basically in the dark and I wish I would've known someone to talk to. Please let me know if I can help you anymore.
Penny (Chandler's mom-former 23 weeker-16 mo. & 18 lbs.) Doing GREEEEEEAAAAT!)
Date: January 29, 2000
From: Missy
Penny,
Thanks so much for the info! From what I understand the company that is doing Daniel's shells does make a mold. But now armed with this new information, I am going to call them first thing Monday morning to find out how they will manage to get a 10 month old baby to sit still while the impressions are being made.
I am a little worried about how to handle any problems that we might have with the shells since they are so far away (they are based out of Fresno, CA). Daniel's ophthalmologist in Los Angeles was the one that recommended the shells, but we are going to be seeing a new local ophthalmologist in Las Vegas. That appointment is scheduled for Feb. 9th so I'll be able to find out if he can assist on a local basis with any problems that we might have with the shells.
Daniel's shells will be purely cosmetic. While I am not totally vain (smile) I do feel, like you, that it is important for Daniel to look close to society's definition of normal. I have noticed the biggest difference in his appearance during his last growth spurt and I don't want people to incorrectly judge him as "slow" or that "something is wrong with that baby" with their first glance because he has small eyes. Don't get me wrong, I am not trying to hide Daniel's blindness and I'll be the first one to speak up to a stranger and say, No he's not sleepy, he's blind.
Well, if you can think of anything else, PLEASE let me know. I definitely do appreciate all of the insight and information.
Missy
Date: January 29, 2000
From: Susan
Missy,
We were able to borrow a video from the ocularists office to view so that we understood exactly how the procedure was done. We found it very helpful.
Date: February 1, 2000
From: Sarah J. Blake
I think different ocularists have different recommendations about removing the shells. Some people I know take them out nightly and clean them like contact lenses. This can be beneficial because occasionally the shells can irritate the eyes. I don't remember if friends have told me it was painful to have the molds done or not.
Date: February 1, 2000
From: Missy
Thanks for the info. Sarah. The question seems to be to mold or not to mold. I spoke with the ocularist and they said at Danie's age they take a quick wax mold without anesthesia. They will do a more thorough mold when he is a bit older. They also told me that the less the shell is removed, the better.
I'll keep you posted on our progress! Every day is a new learning experience.
Date: February 2, 2000
From: Lari Steed
Missy,
Like so many times when dealing with ROP and the issues related to it, we just do the best with whatever we've got. I hope I didn't sound like I was telling you what to do or that what you are doing is wrong. That's not how I intended it. I guess I was just hoping to give you some ammunition to face these people with. I mean how often have any of us dealt with a prosthetic eye company before our children were in need???? I'm sure that they know what they're talking about, and they must be able to get good fits the way they're presently taking the molds. Either way, I know you won't stop until you and your child have exactly what you need. That's one thing about us ROP parents...we learn to be strong advocates for our children.
Lari
Date: March 6, 2000
From: Missy
I've recently had my son Daniel fitted with scleral shells and will share what I've learned so far. They are like very large hard contact lenses and are not surgically implanted - you and remove them and put them back in if there is any irritation. Daniel was fitted with his shells at 11 mos (7 mos adjusted age). But the oclurist told us that they have fitted babies as young as three weeks.
I have been told that the shells will help the bones surrounding the eyes grow and Daniel's face and features develop. They also help to push the sinus cavity into the proper position. But the biggest benefit to us was the cosmetic appearance. I can't tell you what a difference it made in Daniel - we are VERY pleased.
One thing worth noting, Daniel is totally blind in both eyes. If your Daughter has sight in her smaller eye I know that they can do clear shells. But I would definitely seek the advice of a Pediatric Ophthalmologist first.
Missy
Date: March 6, 2000
From: Shari L. De Bari
I emailed Caleb's Ped Optho this morning about the shell for his blind eye. She wrote back and she said she felt Caleb's eye at this time is a mild case, which it is but still noticeable as he's gotten older. She too agreed with that. Who knows how it will be as he gets older.....still mild or worse right? Or does anyone know if it will/can change and be worse or stay the same?
Anyway, she said she could set us up an apt with the Plastic surgeon there that does the referrals for the shells but she said she thought he may at this time say it's not necessary.
So do I go ahead and get a consult or wait? Is this something that we can wait to watch as Caleb gets older then intervine if we notice the eye not growing properly. If we do would it be to late by then to help as he's growing.
I'd appreciate any input. I have no idea about any of this! Thanks
Sheri
Date: March 6, 2000
From: Susan
Sheri,
We have been for a consultation with an ocularist for Daniel's one eye. From what I have learned there is no rush to do this for a baby. It is basically a situation where you might want to get the scleral shell in place if the eye sockets were not growing equally or if appearance was very important to you. I don't mean to offend anybody when I say this and it only my personal opinion but I have chosen to wait for a few reasons. I want to be positive Daniel has no vision in the eye. It takes some time first before we can see if the eye will grow or shrink. Right now at 2 1/2 Daniel's eye is not growing but it is not shrinking. Sometimes as long as there is something there it does encourage growth of the bones. I felt like my son had been through so much that appearance was not that important that I would put him through another procedure when he is still so small. I have a bit of a struggle with regard to loving him just the way he is and wondering how important the appearance of that eye is. We are waiting and with the help of Dr. Trese monitoring his eyes. If it appears that there is going to be a difference in the bones etc. then we may go ahead and get the shell. If you decide that you would like to get a consult, it is very interesting to learn about. Make sure that the individual is certified and does lots of children. If you are overwhelmed with all the other stuff you can wait awhile.
Susan
Date: March 7, 2000
From: Susan
My son does not wear glasses at the present time. He won't keep them on so we feel that they aren't really helping him. We tried contact lenses for a while but that is a long (and expensive) story. Daniel has some vision in one eye, one Dr. called it light location and we think he sees "something" but it is really hard to say as he does not seem to try and use his vision often, other than to find windows and doors (he likes to be outside). The specialists don't always have a lot of time. What we have found really helpful is going to a low vision specialist who really likes children. He answers all of our questions and spends a lot of time trying to figure out what Daniel sees, he can't figure him out either. When I go to these appointments I always take someone with me to amuse Daniel so I can concentrate on what the Dr. is saying and I write a list of questions out and record the answers as I get them.
We were never told about scleral shells until Dr. Trese mentioned them. We were ready to get one and then it looked like Daniel's eye might have been growing, so we are kind of on hold now waiting to see what it will do. It is nice to know that the option is there if needed. In the U.S. ocularists don't need to be certified, make sure that you go to someone who is. I always find talking to other parents (and even blind adults) in my community to find out who they use is really helpful.