The following posts from the ROP list explore the experiences of people with ROP and the topic of how much glasses and contact lenses help. 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: May 31, 1998
From: Adeen
Joel has very inconsistent vision. As I mentioned in my last
letter, he will walk into objects and frequently fall over and
often be unable to recognise me in a group yet he often can see
very small and detailed objects like a tiny particle of bread on a
white tray! Sarah, have you heard of these sort of inconsistencies?
Can quality of vision vary from day to day? (My mother finds this
and has her "good" days and "bad" days often based on atmospheric
qualities) I ffeel very
Date: May 31, 1998
From: Sarah J. Blake
Adeen,
The macula is the part of the retina where you have your highest acuity. I don't know that much about macular degeneration except I don't think it's related to ROP. The peripheral vision thing could indicate where his retina is detached. I have the same problem. I am able to see things off to my left, which tells me that the retina on the far side of my right eye is still attached. My vision is very inconsistent as well. I've always attributed this to changes in my intraocular pressure, but it could be caused by other things as well. It may be that he can see small things which are near him but is not able to identify your facial features from far away. I experienced this kind of thing as a child also.
Date: June 1, 1998
From: Jody Ianuzzi
What can you see?
The discussion of how much someone can see with ROP reminds me of how many times this question led to confusion when I was a child.
Lighting is a factor. Too much or too little is a problem. I am almost totally blind in the dark and at night. The only thing I see are points of light against a velvet background. I have to always wear sunglasses and a visor outside or I have to close my eyes to a slit. If the light is directly in front of me I get a glare through my cataract and everything turns white. My favorite days are overcast. Not only is there less light, but I am not confused by shadows. A shadow can hide objects or be confused as an object. For example the shadow of a telephone pole can be confused for a curb that isn't there. On the other hand a brick and concrete flat area seems to have different levels. Since I only have one eye I have no depth perception. I also have a nystagmus which causes everything to bounce around.
If something 'catches my eye' I can track it. When my daughter leaves the house in the morning I can follow her down the street because I don't loose track of her motion. If I had to look for her I would never see her because I would have to scan for the motion.
I use a white cane when I walk to avoid the little things that trip you like curbs etc. On the other hand I will ride my bike behind someone (never going faster than first gear) I will always follow someone and stare at their back. Family members will call out bumps and obstacles. By following them I know I can't hit anything--unless they do first.
When I was little I was always confusing my parents because I seemed to be able to see things they thought I couldn't then I couldn't see things they thought I could. Some of this was my talent at 'passing'. I would 'look' in the direction I was reaching but then I would feel for what I was looking for. This gave the impression I could see it. Unfortunately, I would also say I could see things that I couldn't because it seemed to make everyone happy.
Many of the tricks that a person learns to compensate for loss of vision are listening for a person's footsteps or remembering the color clothing a person is wearing. (this can back fire, like the time I put hot dogs in the grocery cart thinking the person was my husband. He had a beard and grey coat. Whoops, wrong guy with a beard and grey coat.) (glad I didn't try to kiss him)
Colors are really important. I can find Wise potato chips by the color of the bag. I can find 2% milk because it has a yellow cap. It gets confusing with English muffins because they all come in a white and orange box even the different flavors. Coke comes in a red bottle. Life has gotten a lot more challenging now with too many choices. I've come with low fat when I didn't want it or the wrong brand. I suppose I would have that problem even if I could see. Then there was the time I made noodle sandwiches because it was the same color as the chicken salad.
It is also really important to remember where things are and 'everything in it's place'. Move my keys a foot from where they are supposed to be and they are lost.
It is possible to see a crumb on a tray and miss seeing your mom in a crowd. I have done that. My daughter was in a concert last week and with my telescope I saw her green dress and knew where she was. What is really a pain is girl scout meetings where they are all wearing the same thing. She gets lost.
I had a lot of problems in school because my teachers were as confused as my parents. They thought I was 'cheating' when I said I couldn't see things. If I can throw a basketball, why can't I hit a baseball? I remember my Earth Science teacher really got mad because I said I couldn't use a stereoscope to look at a map. How do you use a stereoscope with one eye? The biggest problems I had were in gym. I wanted to do everything that everyone else was doing. I didn't want to be a 'failure'. When it came time to choose teams I was never picked. My mom always knew the days I had gym because I came home crying. Make sure your child's gym teacher understands your child's vision. Don't leave it up to your child or they will try their best right to the point of frustration, especially in front of their friends. (I now have a black belt in judo, I found my place in physical education)
Speaking of school. If your child's class has eye exams in school, make sure they are not part of a group screening. I remember standing in front of the class having to admit I couldn't see the chart.
Find some way to explain to your child what their vision is compared to 'normal'. When I was a kid I could see but I didn't realize how much different my vision was from everyone else's. After all I could see the big E on the eye chart. I don't think I truly appreciated this difference until I went with my daughter to her eye exam. Wow! I saw a blur of light and she kept reading and reading all the way to the 20/20 line with her glasses. Gees! I was really missing a lot.
By explaining your child's vision they will be able to explain it to others as well as understand themselves. I remember when I was about 5 I went to the optometrist with my dad. There were all kinds of glasses there but I couldn't have any. I didn't understand why he could wear glasses and I couldn't.
My mom still doesn't know how much I can see. I made some simulator glasses for her by covering the areas of my field that I can't see with white paper and covering the areas I can see with blurry (the kind with the rough nonglossy finish) scotch tape. She tried them on and said that if that is what I see then I can't be able to do the things I do. I don't think my mom realizes to this day that many things I do don't need vision.
I hope these comments help parents understand their children's vision a little bit better.
Date: June 1, 1998
From: Sarah J. Blake
Jody,
Wow! What an awesome post! A lot of it was so familiar! I'll try my hand at this.
I can see steps going up and estimate the height, but I often miss steps going down. I can see the chart sometimes at the end of the room in the doctor's office, but it is just a big lighted square. I can see my black cat on a tan, pink or white blanket, but I only know that she's my cat because of her size. I once mistook my mom's head for the cat because Mom's clothing was a similar color to the blanket and I didn't know she was lying on the bed. I'm still mortified about that one, even to tell you listers who are likely to understand. I can sometimes see the print on a page, but it's more like one long black line, and that's assuming it's 4 inches away from my face.
Lighting is a major issue for me. I don't like direct sun light, but it's wonderful from just the right angle. I like fluorescent lighting best for inside stuff, but most indoor lighting is getting to be very insufficient for me. I have 60-watt bulbs in my room right now, and they don't help as much as they could. I'm told this is because of the condition of my cornea. Everything looks pretty much like I'm looking through a grey film lately. I can remember things didn't look like that a year ago.
I was also always confusing my parents. They made the decision to have me learn all the alternative techniques rather than concentrating on visual functioning, so most of what I did develop was incidental. I never went through a vision screening at school to my knowledge. I think that my use of the alternative techniques (braille, cane, etc) gets people really confused when I start doing anything visually. You know, I'm supposed to be blind. I'm in the weird situation of not being able to live without using these techniques but being terrified of losing the little bit that I have, and I really don't know why that is because it's not nearly as useful to me as it used to be.
Date: June 1, 1998
From: Pam Berryman
As an adult with ROP with similar circumstances as I child, I can give you some feedback about fluctuating vision and seeing things peripherally.
I'm not familiar with some of the terminology related to the eye, but I can share what I do know. In reading many of my past eye reports, I have learned that I have a "dragged macula" meaning that the small spot in the center of the retina where the sharpest detailed vision is found has been pulled off to the side. This has left a "blind spot" in the center of vision, and as you described with your son and mother, causes me to view things only peripherally. My dad and I often laugh about some of this discrepancies in my vision--of course, in a humorous way. Dad told me that I used to be able to see a cupboard door or car door opened when it was opened just a few inches and I was standing about two feet from the door. I could not recognize faces either. In fact, I got myself in trouble a couple of times when I grabbed a man's arm in the store and harshly learned it was "not my daddy." My parents couldn't always stop the situation in time and were just a few feet away from me as I look at an item on the counter. They would then explain to this person that I was legally blind and had vision to walk by myself but could not recognize people. Yet, here's the same child that could tell when a door was only opened a crack and who fought over plastic dogs my best friend and I had, because my friend, Audrey, had the same dog but her dog had more red on its side. My dog had a white area where the pain was missing, and I caught this.
What I'm trying to say is that these visual discrepancies are not uncommon in children or adults with visual impairments. It sounds like your son can see best when he gets an object or view into the spot of vision he has peripherally. In addition, lighting, color contrast of object and background, fatigue, and other factors cause vision to vary from day to day.
I also have what is termed retina folds (can't remember the term that was in your last post), but this is what I believe the term refers to. In ROP, abnormal blood vessels tend to pull on the retina which can cause the macular to drag to the side or can create folds in the retina. Perhaps, others or Dr. Richards can explain this a little better.
As a result of a major retinal fold, dragged macula, and pigmentation on the retina that has increased over the years, my visual field has become spotty. I lack central vision, but I also have other peripheral areas (side vision and downward vision) where I lack vision. Being in my 40's, I do experience floaters more frequently. My vision does fluctuate on a daily basis and I've had to learn how to adapt to these changes on a permanent and day-to-day basis. I've learned to listen for echoes and not how close I am to objects. I use my white cane in crowded , dimly lit and outdoor areas. Basically I use it all the time if I'm traveling alone. I've learned to read braille, along with using my low vision aids for small amounts of reading. I do use a scanner and computer where I can place printed material with good contrast onto the scanner and have my speech synthesizer/speech program interpret the print and read it back to me. This can also be saved on a disk.
What I'm wanting to stress are two points. I believe you probably have seen the eye specialist--and if so, I hope he/she was able to answer some of your questions. I know it can be extremely hard to get physicians/ophthalmologist to take time and focus on questions, let alone, explain things in understandable terms. It's hard to do this, but I feel it's important to say "I don't understand, and can you explain this in a different way. You do have the right to know about the nature of your son's vision and what the prognosis might be.
I have found that ROP does affect persons in a variety of ways, and you cannot say that what happens to one person will happen to another. My suggestion is to continue to learn about the services that are available in your area/country. Nothing takes the place of vision, and adaptive techniques or aids are not the total answer, but there are devices, adaptive daily living skills, travel (mobility) help and computers that are adapted to the visually impaired that can help him live a productive life. Most important, is you love and encouragement in his endeavors to develop into the individual he is to be and to accomplish education and other life goals. Yet, it is also important to recognize visual limitations and learn from him as to what he can see or not see. Keep the communication open. Help him to strive to be the person he is to be but to be able to recognize his limitations, but not be ashamed of them.
Date: June 1, 1998
From: Pam Berryman
Hi Adeen, Jody, Sarah, and everyone,
I know I touched on how I see in some previous posts, but I thought it might be helpful for me to devote one post to explaining my vision in a little more detail.
As a child, I seemed to have a wider field of vision and could see more detail at close range. My vision was 20/200 in my better eye, and I could see peripherally. As others have mentioned, the degree of lighting (60 watt bulbs or better), the direction of the light, the color contrast of the background and object I was viewing determined how well I could see. Of course, other factors within my eyes had some say as to how I saw from day to day. At an early age, I could perceive a car door or cupboard door being open only a few inches when I was about two feet away. Yet, I could not recognize faces. Sometimes, I got into trouble when I though I was taking dad or mom's hand and found it was another person.
I did have enough residual vision to attend classes for the partially sighted during elementary grades. Boy, can I remember some of the ancient magnifiers and projectors one would use to read a book. You had to place a coat or sheet over the projector to darken the area in order to read what was on the screen. Humorously, I can remember one day when my friend, Julie, decided to read a story together, and we noticed a strong smell of smoke after a few minutes. It turned out that the unit overheated, so we had to give up our plan for reading. Thank goodness, electronic magnifying devices are much more sophisticated and better build today!
In junior and senior high, I attended regular classes and had an Itinerant teacher--the teacher I had in my self-contained classroom for a couple of years come to help me during study hall a couple of times a week. Though I was integrated to one class (integration was just beginning in the early 60's), I had not been in classes with fully sighted students. I did not know how to explain my visual impairment. I just told the teachers that "I can't see very well." I had my large print books, but it still didn't give any understanding to how I "saw." I even did what some of you did in regard to gym class. I attempted to play soccer, dodge ball, and certain games--I thought I could play, because I participated in gym with my class for the partially sighted where games were modified. I had no clue that sighted students did things differently. After getting hit in the head a couple of times, I realized that these games were not for me. I felt I could not keep up with my classmates in homework assignments. Mom and dad did catch onto my dilemma, and my parents and Mrs. Briggs, my Itinerant teacher, talked with my junior high instructors. They were stunned and amazed that my vision was as poor as it was. At that time, I could move about indoors in a limited crowd without the use of a cane or assistance. I did need help in learning where my classroom were and would practice this route a few days before fall semester during each beginning school year.
I was able to verbalize my visual impairment and need more assertively in high school. That was one good point that helped me in my academic studies. However, at this time, they did not have physical education classes that I could attend nor home economic classes that were flexible enough to work with me on cooking and sewing skills. I ended up weaving while the other students used the sewing machine or cooked in the kitchen. I ended up getting in mild trouble in class as I was frustrated with not getting anything out of the class and tended to take it as "a joke." At that times, there were no IEP plans, and Mrs. Briggs, as much as she was a strong inspiration to me to achieve academically, did not come to bat and see the need to work toward adapting the portions of the course to my needs. All of us ended up doing the best we could.
I never received mobility training until the ninth grade. I was then given a folding cane and told to "hold it out in front of me while crossing the street" since I had some vision and didn't need the touch-tap method. Worse yet, I had another mobility instructor who worked with me a couple of times and hardly gave me any feedback. We worked a couple of times under the blindfold, as I was eager to learn how to use the cane and be able to travel in dark areas, if the need arose.
This same instructor, unfortunately, ended up being my instructor during a college prep course for visually impaired students preparing for college. He was very harsh with me as I had not receive much city travel and felt lost when walking to and from the bus stop and rehab institute. I did end up catching on. When I asked him about how I should use my cane, he stated, "Use it any way you want to." That was such a helpful answer--ha! When I saw later records of his reports on me, they stated that I did not appreciate the vision I had and he used a blindfold to "make me appreciate my usable vision." I was devastated and infuriated when I saw these reports several years later. When I did have mobility instruction in Detroit, my dad did come down to silently observe on one occasion as my instructor would meet me at the planned destination. Sometimes, he would not be there at all. My parents were very upset, and I did not look forward to travel. I did things independently, but I felt frustrated because I did not receive any formal training in low vision utilization nor using my cane.
Years later, this played a factor in me questioning whether I should or should not use a cane. I thought of the cane as "faking blindness." It took a positive internship in rehabilitation teaching at Heines, Il. with very supportive low vision persons that helped me to understand the nature of my vision and to realize I had a limited field and could definitely benefit from my cane.
I did receive beginning braille at this prep program and continued to learn it from a rehabilitation teacher in the 70's. I was beginning to notice that I could not easily see lines on the notebook pad to take notes. My totally blind friend, Chris, and I often laugh about my frustration in taking notes when our professor in Earth Science turned of the lights. Chris would braille our notes, and I would help her with some of the diagrams I could see with my telescope. From this point on, my vision began to change.
I developed cataracts in the 80's and did experience an angle closure glaucoma attack in 1975. In the early 80's, I ended up taking drops to control my pressure in both eyes. So far, I've had a couple of occasions where my pressure has escalated, but timoptic has done a wonderful job in keeping my pressure in control. The surgery in my left eye in 1975 did relieve the narrow angle through an iridectomy. In 1988 and 1990, I had cataract surgeries and lens implants. During the 80's, pigmentation was also increasing on the retina.
I go through stages where I feel angry that I did not receive better services. I could have benefited from learning braille at a much earlier age while being helped to maximize the use of my vision. I'm glad steps are being taken to evaluate a child's vision and reading mode, but more emphasis needs to be placed on the importance of learning braille for communication and literacy purposes. I wish I would have received more instruction in how to use my vision while traveling along with instruction in the use of the white cane.
I'm glad I did receive help in the 90's from a mobility instructor in Kalamazoo, MI and from the students and instructors at Heines, Il. Also, Sue Illingworth, who is a friend, was a great support in my learning braille. Practice has enabled me to use it for presentations, notes, client reports, and reading magazine articles. I love weekends where I spend an hour or more reading from Matilda Ziegler enjoying various articles while lying in bed. Practice has helped me to improve upon my cane skills, while I continue to use my vision for colors, buildings, and large objects.
My experiences have helped me to become a stronger person. More important, they have enabled me to see the need for parents and teacher to work together in planning a child's education and other services. Parents should not be left in the dark. Things should be explained and communicated. At the same time, parents can help by reinforcing some skills at home, learning about their child's visual impairment, and learning what helps him/her see best and what affects his/her vision. Groups, such as this group, and the groups Sarah is involved in are examples of wonderful support options to help parents, children, teens, and adults. I believe that if we all work together, we can make a difference in the welfare of children and adolescents of today as well as be an encouragement toward support and research to benefit adults with ROP.
Date: June 2, 1998
From: Jody Ianuzzi
Hi Sarah and list:
Maybe all the adults on this list should start sending stories like this to the parents so they can get more of an idea of what their children can see, but also to get the feeling that we are dealing with it. We are even dealing with it with a sense of humor.
I remember when I mistook a field of hay for a field of cows. I just saw dark spots and figured what it had to be. How about the time I smashed a spot on the counter with my shoe because I thought it was an ant. One dead spot.
Interpretation is a great part of low vision. You think you see what should be there. I actually think that this is a very useful skill. We see with our brain, not our eyes. I am also a whiz at memorizing telephone numbers. It is a lot easier than looking them up. (just a note for those who don't know it--directory assistance is free to visually impaired people and telephone bills are now available in large print and braille. Just call the phone company and ask)
I think the one thing that is difficult now is that my vision is slowly decreasing and no one understands how frustrating that is. A lot of people feel, well you couldn't see before, what is the difference. To them blind is blind and I have 'nothing to lose'.
There are certain thresholds that you pass. Not being able to read print in any form is most frustrating. Changing from a 10x to a 20x magnifier and running out of power. Switching to a CCTV when a magnifier once worked. This is especially a pain with price tags. You can bring a magnifier to a store but not a CCTV. I have also lost color detail. When I go to the fabric store I have a hard time telling dark colors apart. It could be navy, dark green or brown and they all look the same.
I think my orientation is better than a sighted persons because I am always thinking about where I am, how many turns I've taken, how many steps there are, how many doors I've passed. etc.
I once thought I would try to change the attitudes of the people around me towards blindness. I think this is almost impossible. I think all I can do is carry myself as a competent blind person and walk with determination with my white cane. I know people see me and perhaps just by showing my ability they will see past my disability. That is why I picked my signature quote.
If you parents are enjoying these stories I'm sure we can come up with a bunch for you. If you have specific questions about specific situations then just ask.
Date: June 2, 1998
From: Sarah J. Blake
Jody,
Good comments again.
I don't really know when I first had high pressure in my useful eye. It was discovered in 1992, but I'm sure it was there long before, as I remember having the same kind of visual inconsistencies at age 14 that I do now at age 26. I remember complaining to the staff at the school for the blind that summer about the 3 and 4-hour periods of total blindness. Staff and students alike accused me of trying to get out of activities and chores. I was terrified of not being able to orient myself because I could not see any buildings. I was finally taken to a doctor there who said I was having ocular migraines. Inderal helped. Hmmmm... No wonder. It's an oral beta blocker. I'm now using Betagan instead.
Sometimes I feel like I talk too much about all this, especially lately. My parents don't respond much at all to my musings about what helps my visual functioning and my fears of what could happen while I'm in limbo waiting for this move and a new doctor who can do the surgery. It's hard for me to ask the questions I want to ask my doctor because I get all emotional. I think it's more fear and frustration than anything--fear that maybe I won't get that best-case scenario this time like I always have in the past and frustration because I want one person in the health-care community to be real with me. He's very good, I've discovered recently, about explaining things to me, but this was my first time to relate to him as the person responsible for decisions about my treatment. He's been seeing me since I was 4. I have two other significant conditions, one of which has been ignored and passed off as stress.
Going to the doctor is very stressful for me. Oh, yeah, I don't have a lot of control of which direction my eyes are looking. I hate the slit lamp because it always means I'm going to have to look down which is the most impossible thing one can ask of me when that light is in my face. I've gotten to where I can anticipate when he's going to pull that thing over and I try to ask ahead of time which direction I need to look. But sometimes he throws a left at me instead of down.
Oh, one more story. When I was 7, I went to Nebraska with my grandparents to visit my great-grandparents. This is the only memory I have of my great-grandparents, and it's very faint. One of the things I remember is that my grandfather caught some grasshoppers in a jar so that I could look at them up close. This is the only time I've ever seen an insect. I remember the experience, but I cannot recall what the grasshoppers looked like.
Date: Wed, 14 Oct 1998 10:27:01 -0500 (EST)October 14, 1998
From: Sarah J. Blake
I really take issue with the term "useful vision". Perhaps it is my own personal problem, but I have noticed that many doctors seem unwilling to acknowledge the benefit of vision which is not measurable in the normal sense. I can't read the chart, but what I have is useful. Sorry to gripe, but this really has been bugging me.
The differences in the way people write about their child's vision have to do with Europe vs. US measurements, I think. They work the same, but the measuring distance is different. The top number (usually a 6 or a 20) represents the measuring distance. The bottom number represents how far a normally sighted person could be and see the object which the child can see. In a person with normal vision, the two numbers will be the same. For instance, 6/60 means that what your child can see at 6 feet you can see at 60 feet. This is, of course, assuming that your vision is 6/6 (20/20 in US terms).
Some people who are extremely near-sighted have their acuity measured in even smaller terms. When mine was measurable, it was recorded as 1/200. Now that I can't read, I think it is recorded as either hand-motion (HM) or count-fingers (CF) depending on how I did that day. Lighting and the condition of my cornea all affect this.
12 months is probably very early to have these estimates done. Even if they are done, they are not always very accurate, I don't think. As your child grows older and can tell you more and do more things, it will become apparent what he does and doesn't see, and even the acuity may be misleading depending on which parts of the retina are torn, detached, scared, etc. It's very important to rely on what you observe as well as, if not more than, the numbers.
Date: February 22, 1999
From: Jennifer
I was wondering if anyone could explain something to me. Madison's left eye is completely black in color. There is no iris. It just looks black. What does this mean? Also, it looks like the pupil in her right eye sits far back into the eye and is not completely round? Although her twins eyes are normal in appearance. They have both had laser and vitrectomy surgeries to treat their stage 4/5 ROP. I am just wondering how the "black eye" affects her vision, if it affects it at all. Should we be concerned about her eye having such an appearance? Also, she is returning to Michigan at the end of March to be fitted for glasses. I intend to ask Dr. Trese this but, I was suprised that he wanted to fit her for glasses. Considering that we were told initially that all that Madison and Ansley would see would be light. Has anyone else experienced a similar situation? If so, how did the glasses or contact lenses help to correct vision? Their retinas are beginning to attach like a piece of "swiss cheese" we were told at our last visit. We are also (actually since Sept. 98) using an eye drop called atropine to keep their pupils dialated ( to allow maximum light in to stimulate the retina) and pred forte as well which is an anti-inflamatory. Has anyone had to use drops for such an extended period of time? We were excited to hear that Madie needed glasses but hesitant as well. We are blessed to have any vision at all and honestly just the fact that they made it after such a long NICU stay is something we thank God for every day. I appreciate any responce and advice.
Date: February 22, 1999
From: Sarah J. Blake
Hi, Jennifer.
As a person who was always said to have "light perception only" I can tell you that it is a very relative term. Glasses may be a wonderful thing for Madison and help her to maximize whatever vision she has. As she gets older, she may start to use it for certain things, such as avoiding objects in her path or locating certain types of things. She may be able to locate doorways by noticing the light coming through them. I'm trying to think of how to put something into words. When my glasses are off, I often think that things are closer than they are. When I'm wearing my glasses, I'm more able to put them in the right location. I don't think I've described this too well, but they do make a difference in a positive way.
I had to use Atropine for several weeks after my surgery in December. I was told that the pupil contracting and dilating could cause swelling in the iris after surgery and that was the purpose of keeping it dilated. You may notice that they respond to things differently when you stop the Atropine. Without the pupil being dilated, things look different. For me, having the pupil dilated was actually an advantage. For most people it creates a lot of blur, but for me it allowed me to get maximum benefit from lighting. I do have to clarify this, though, by saying that the lighting in my home is less than desirable.
I'm still using Pred Forte, and I have a feeling I'll be using it for a long time. This is more because of the corneal transplant than the vitrectomy, but I would suspect babies use meds longer than adults.
Date: February 22, 1999
From: Jennifer
Sarah,
Thank you for your post. At what age were you fitted for glasses? I think you and I are around the same age. Didn't you say you were born in the 70's? Actually I was born in 69. Did you have a vitrectomy when your ROP was discovered?
Date: February 22, 1999
From: Sarah J. Blake
Hi, Jennifer.
They weren't doing vitrectomies when my ROP was first discovered--at least, not on babies. I was born in 1972. I had one at age 8, though, and that was when I first got glasses. I know things are way different now, but I think the differences I've noticed with my glasses might be similar for younger children. What I posted was one of the first things I ever noticed about my glasses, and it made such a difference that it stayed with me all these years. My parents were not very excited about my glasses back then. They were plastic frames with huge lenses. My prescription is +17. But I couldn't stand to take them off. Today my frames and lenses are a lot smaller even though they're the same prescription. I still hate taking them off.
Date: February 22, 1999
From: Kathy Burkleo
Hi Jennifer,
I just read your two posts. For whatever its worth, I am an adult ROP survivor born in 1948. ( Sounds like an antique, huh? However, I don't feel or act that old...just ask my family and co-workers :) ) Anyhow, I was fitted for glasses when I was around two yrs. old, and have worn glasses ever since. It's hard to believe that they fit little babies for glasses. I remember my mom always said she was afraid she would have a hard time keeping the glasses on me as a toddler. The first day I had them, I didn't want to take them off to go to sleep! I guess even at that young age the visual contrast was so remarkable, I didn't want to go back to the total blurriness.
In regards to the nystagmus...I have that in both eyes. They are quite jiggly. As far as from my vantage point from looking out, the juggling is corrected quite a bit with glasses. I REALLY noticed it when we got computers at work and looking at the monitor was such a strain, I nearly threw up after a few minutes. After a few days of struggle, I called my ophthalmologist, and after an exam, he prescribed "computer glasses". What a welcome relief! I do not think there is any other treatment for that, but possibly someone with more knowledge might offer some information.
Kathy
Date: February 22, 1999
From: Gail Gilchrist
Hi Jennifer,
Liam has been wearing glasses since he was 4 months old (corrected age). His regular pediatric ophthalmologist has never predictied that he would have much vision and certainly didn't think that he would ever have any fine vision. (He has ROP stage 5 in the left eye and 4B with a dragged macula in the right). He did, however, prescribe glasses at our insistance as Dr. Trese suggested that they might be a possibility for Liam. He now seems to see much more than they ever predictd he would. His visual acuity is assessed at either 20/200 or 20/400 depending on the Dr. doing the test. Because he doesn't speak yet, it's hard to tell how much he can really see but he functions very well visually (i.e. he can locate toys, likes to look at books, doesn't bang into things-(anymore than a sighted toddler would!) and gets around easily on his own). He tolerates his glasses well and has since he was about 10 months (corrected). I personally feel very glad that we did get glasses for him and hope that they actually have helped and are helping to make his world a little easier to see. Hopefully one day soon, he'll start to talk and will be able to tell us how much they actually help!
Liam's left eye is also completely black in color. The iris was cut when he had his 1st vitrectomy and the pupil was triangular for awhile but it is now permanently dialated and thus just looks black.
All the best,
Gail-mum to Liam 25wks (01/22/97-starting to try to put his
glasses back on when they fall off! and still only saying one word
consistently!) and
Aidan 35wks (09/20/95-Hirschsprung's disease)
Date: February 24, 1999
From: Angela Brady
Can anyone define "legal" blindness for me; textbook definition and practical (what it's like to have it) definition, please.
In speaking via telephone with Colin's Pediatric Opthamologist, I've just learned that Colin is "legally blind" in his left eye. I am floored because, although I knew his vision was low in left eye, I never realized how low. I'm upset with myself because after umpteen appointments, this info. just never seemd to hit home. Pranav, I think I'm going to take you up on your suggestion to bring a tape recorder next time; and perhaps make other arrangements for my two older children so I can focus on what the doc says.
Also, can anyone provide any information on the use of a pediatric contact lens? Our doctor is recommending one due to the "great refractive difference" between Colin's left and right eyes. Doctor says that the contact lens will better enable Colin's brain to integrate the images sent by the eyes, I guess better than the glasses can (?). Can you comment on this, please? We were going to get a contact lens a few months back when Colin wasn't very compliant about keeping his glasses on, but we "chickened out," fearful of putting the lens in baby's eye...ended up having the optician send the lens back to the lab. Now it seems as if this might have been the best thing for Colin.
Date: February 24, 1999
From: Sarah J. Blake
Legal blindness is defined in two ways:
1. 20/200 or worse in the better eye while wearing corrective lenses. If your vision is 20/200 without your glasses/contacts and 20/80 with them you are not legally blind.
2. The visual field is restricted to 20 degrees or less. The visual field is the entire area in front of you that can be seen. It can be as wide as 180 degrees.
What legal blindness feels like is a very subjective thing. It depends on the person's eye condition, and even with the same eye condition there is a lot of variability. For instance (and I hope she won't mind me using her as an example), Pam has ROP and has 20/300 in one of her eyes. But that is in a very restricted area due to the type of damage to her retina. She has described only seeing parts of people or objects. My visual acuity is much worse, but my field may be more in tact than hers is. If both of us had the same visual acuity we still might function very differently.
This answer doesn't exactly help you. It's very normal to want to know what your child sees. My advice when people ask me this is unfortunately to wait and see, watch the child interacting with things, and later when he is verbal ask him. I am 26 years old, and my parents are still learning what I can and cannot see.
Date: February 24, 1999
From: Susan
Angela,
We are just going through the process of getting our 18 month old son a contact lens. At first we had been told not to, but now the Dr. has changed his mind. In our case it is because his retina is attached on the outer edges but there is a fold in the middle.
Another Mom explained to me that the contact lens is very helpful in developing the peripheral vision. Apparently glasses are just helpful for looking straight ahead. In her daughters case the contact was worn until this vision was developed and now she just wears glasses. This Mom gave me a very good tip for getting the lens in that worked for her. Mom would put a sticker on the end of her nose and her daughter was so busy looking at that she would be able to get the lens in.
Date: February 24, 1999
From: Lari Steed
Dear Susan,
Both Zane's retina specialist (Dr Capone), and his refractory specialist (Dr Drack) told us that by age two he should be showing some signs of visually guided behavior. Zane has no vision in his left eye and he never will. It is severely scarred from an infection and has basically "shut down". His only hope was his right eye which he's had laser tx, vitrtectomy, scleral buckling, lensectomy, and numerous removals of scar tissue that was causing traction on his retina. Each time he had the scarring removed, it would peel away a little more retina. Of course doing nothing about the scarring would've meant retinal detachment so we were kinda damned if we did and damned if we didn't. Zane's initial dx was ROP stage3 with an 85% chance of complete recovery. After his ROP didn't regress, he had laser surgery after which he hemorraghed in both eyes. This is when our hell of surgeries began. In all, he had 15 between the time he was 3mths and 2years. Anyway, our hopes for functional vision were slowly going away and in the end, we and our VI had tried light boards, flashlights, etc., and he never responded. Never. The only times we could tell he even had light perception, were when the time would change and he'd wake up earlier (as the sun rose), and sometimes when we'd try to be REAL quiet and turn on the light he'd stop playing and listen for us. He does have attached retina, but we think its "thinned out" and its a small area. His VI described his light perception like a refridgerator hum. Its probably there, but because it doesn't mean anything to him, he just tunes it out. Made sense to me.
I didn't mean to go on and on, but this stuff is so important. Also, I have to tell you that when Zane started going to the Center for Visually Impaired, and I was able to compare him to other children with varying degrees of visual loss, it became easy to tell the differences. I think you'll know when its time to continue with lenses or not. And believe me, if he ever acts like he's being visually guided, we'll have that lens back in so fast he won't know what hit him! I want to add that our decision didn't come easy. We want to give Zane every opportunity available, but we also had to consider the risks involved in using the contact, if there weren't any benefits, it wasn't worth losing that eye to infection as well. At least now, if there's ever an opportunity for a retinal transplant, he's still got that eye.
Date: February 24, 1999
From: Jody Ianuzzi
Hi Angela,
I agree with Sarah's explanation and description of legal blindness. One point I would make is that the definition is the 'best' limit of legal blindness. 20/200 is the most a person can see and still be legally blind. My vision is 2/400 which means I can see the big E on the eye chart from 2 feet away. Someone with 20/200 vision can see the second line from 20 feet away. In comparison a person who is legally blind sees the same image from 20 feet away that a person with normal vision sees from 200 feet away.
I agree that with ROP many people see many different things. I have a wide field of vision, but it is spotty and has images like the flashbulb effect in what I see. So where I see blurry colors in a wide field someone else may see a small field more clearly.
The only suggestion I have to parents is DO NOT ask your child if they can see something. Ask them what they see. I wanted to please my mom when I was little and I always said I could see things that I couldn't to make her happy. As a result my mom really didn't have reliable input from me. Of course your child can't describe their vision as compared to normal because they don't know what normal is. I would probably find a round about way to find out their vision by using subtle tests. Don't put them on the spot though, it might make them feel like they have to pass or fail.
Date: February 25, 1999
From: Lari Steed
Dear Angela,
I am a NICU nurse, and when Zane was in the NICU, it made things better. He wasn't born at the hospital where I work, so the doctors and nurses were new to me. I think that was good. It is funny, though, how once its your child, you become a mom and all nursing sense flies out the window. Even though I was used to handling tiny babies, I treated Zane like a fragile egg. Probably like most of you. I did realize that because of my experience, I could see him differently than my husband. I could literally see around all the equipment and just see my baby. I think a lot of time its the ventilator, monitors, lines, etc., that overwhelm new parents. It also made it easier just knowing what most of the 'jargon' meant. All of this to say, however, that when we entered the world of ROP, I knew very little. Its still sometimes a difficult concept. I think Dr Richards does an excellent job of making things understandable.
Date: March 29, 1999
From: Kathy
It is nice to have some more "older" preemie adults with ROP joining this list. Have you written before your recent posts? It sounds like you are also another Californian! I was born in March of 1948 with ROP. I don't know what my birth weight was as they put me immediately into an incubator. I was born in Altadena, CA, which is next to Pasadena. At two weeks of age I weighed 3 lb. 2 oz. and that is the first weight entry I can find. That was after two weeks of being fed every 2 hrs. I still like to eat, too!
I have no light perception in my left eye, and have useable vision in my right eye as I am corrected with glasses plus an intraocular lens implant to 20/30+. I know my peripheral vision is not that great, as I bump into stuff and people a lot, and also miss seeing things on my left side especially when someone hands me something or reaches to shake my hand. You mention that you can only see straight ahead. Is that like tunnel vision? How wide of span can you see looking straight ahead? Do you drive?
What kind of work do you do? I am a social worker for Child Protective Services. We live way up north, approximately 100 miles north of Redding.
Again, it was good to hear from you.
Kathy
Date: March 29, 1999It's Teresa Dawson,
I am legally blind, I will try to explain this to you the best I can. I have ROP. Stage 4, and 5. On a good day it is like looking through a haze of something. There is always glare and lots of intense light. Sometimes , most of the time it hurts my eyes.
On a bad day, such as today, I have frequent headaches, lots of glare, watering eyes, and extreme tiredness. My doctor says it is like looking through tracing paper on a television screen with the brightness and contrast settings turned down.
I cannot make out people's faces, genders, skin tones, hair colors, features, clothes colors, or patterns. If I am outside there are not clarifying lines to define surfaces. I have no depth perception, no binocular vision.
I hope this helps you.
Please understand that I have other eye conditions other than ROP which may contribute to how I see.
Over all the total count goes like this.
If you want to know about the other related surgeries just ask.
My doctor says there are more surgeries to come but he will not discuss this until we cross that bridge.
Date: April 20, 1999
From: Sarah J. Blake
The way I understand it is glasses only correct refractive error, which involves how light patterns enter the eye. Glasses cannot correct retina problems, which is why not all people wearing glasses correct to 20/20. Some of my friends are wearing -12 and only correct to 20/40. This is because they have additional problems hindering their vision. I know that the shape of the eye and the condition of the lens has something to do with refractive error. I have no lens in my functional eye. I don't know if this affects near-sightedness or not. Hmmmm... Maybe time to call and pick my last optometrist's brain. He still discusses stuff from my history of treatment with him and is a huge source of information for me.
Date: April 29, 1999
From: Sarah J. Blake
I got off and called the optometrist about the prescription thing. I've just gotten incredibly curious about this one. I talked to the assistant, and what she's told me is that the lens contains 32 diopters of refractive power. If you're near-sighted, your eye has too much, but if your lens is removed that's 32 diopters gone. So my +16 is what it takes to equalize things. If I still had my lens, I suppose my prescription would be around -16.
Date: April 30, 1999
From: Pam
As I'm recalling low vision seminars that I previously attended, your information jogged my memory. I do recall learning that nearsightedness is the result of not having enough diopters and farsightedness results from The position of having too many diopters, so to speak. This works in conjunction to where the focal point of light rays are positioned in relation to the retina. If focusing short of the retina, the person is nearsighted and requires a minus prescription to push the rays back onto the retina for a clearer focus in the distance. On the other hand, if the light rays focus behind the retina, the person is short of diopters and requires a plus prescription to enable the rays to focus on the retina. Thus increased diopters enable the person to see more clearly.
I never realized that the human contains 32 diopters. Also, it makes sens that removing the lens would detract that amount of diopters, so a person would need a lens to replace them in order to restore clarity. This wold make sense that the person would have a very high plus power in a contact or lens in glasses to compensate for the loss of diopters. Also, it would also concur with circumstances that the Director of the agency where I was employed did not require a lens implant but a very low power minus lense since he was severely nearsighted before the onset of his cataract and did wear a -27 lens up until his surgery. On the other hand for those of us who require a plus prescription due to being farsighted, or for persons who have a low power minus lens being nearsighted, removal of the lens would necessitate some replacement of diopters or prescription adjustments to enable the eye to focus as clearly as possible.
Sarah, thanks for your input. VAluable points worth noting and helpful in understanding the nature of prescriptions a bit more clearly.
Date: April 30, 1999
From: Scott Richards
Those are some good explanations (and some good deductions) about plus and minus lenses. Pam's description was entirely accurate concerning minus lenses. Plus lenses are used for far-sightedness (a.k.a. hyperopia). In hyperopia, the eye is too short (or the light is focused behind the retina, depending upon one's point of view!). The plus lens bends the light rays inward so they focus on the retina. A minus lens bends the light rays outward so they focus on the retina instead of in front of it.
+27 is a rather high lens power. This could be explained by an extremely small eye or an eye that has lost its lens (presumably due to lensectomy at the time of a vitrectomy).. The lens in the eye usually provides about +20 diopters of power, and this would have to be compensated for if it were removed.
Intraocular lenses are always artificial, never from donors. They are made of a number of different materials, usually plexiglass (PMMA) or silicone.
Contact lenses or intraocular lenses cause less image magnification or minification than glasses, and are visually superior for most people. They do have the downsides of requiring surgery or daily insertion, so it becomes an individual choice as to the pros and cons. For adults, the image size disparity between the eyes can make fusion or binocular vision impossible. For infants (those wonderfully plastic and adaptable creatures!), the image disparity doesn't seem to cause so much trouble. Check with your ophthalmologist as to which is best for you.
Examination under anesthesia may be needed to measure for glasses, depending upon how cooperative the child is in the office, the degree of media opacity, etc. It seems a shame, but it's often the only way to do it.
Date: May 1, 1999
From: Kathy Burkleo
In regards to your question about a lens implant, I have what is called an "intraocular lens implant". In very simplistic terms this is how I got an artificial lens: When I had a cataract removed out of my right eye that has vision, the doctor zpped the cataract, including my own lens, with laser, then made a little slit above the iris, in the white part, and then stuck a little vacuum cleaner type thingy in through the slit, sucked out the zapped cataract and lens, and then he inserted a teeny little artificial, plastic lens with a little "tail" on each side for stability, in through the slit, positioned it, and stiched the slit. Before the surgery he took all of thee measurements and stuff and had a special lens made. So when the bandage was removed the next day...WOW! I could see better than I ever had! Since an artificial lens doesn't adjust like a real lens (which is similar to an automatic focus on a camera, the doctor fine-tuned my vision with glasses. It was really neat because I had always had these thick glasses. Now with the artificial lens and thin glasses, I see much better.
Date: May 6, 1999
From: Pam Berryman
Hi Kathy,
Wow! The cataract surgery/implant did give you quite a significant visual improvement in your eye. I am really happy for you.
I may have missed this information, but when did you have the cataract surgery? On the whole, how has it taken your eye to acquire this degree of vision?
I'm not sure how to word this next question, but is there a way you could describe what it is like for you to see around 20/40 corrected opposed to how you perceived 20/200 and 20/1000 when uncorrected before surgery? I guess I'm one of those people that is curious about varying degrees of vision and tend to ask several acquaintances and friends who have either gained or lost vision to share with me about what their varying degrees of vision look like and appear to them. I believe it's my way of learning and genuinely trying to understand how others are perceiving their visual world as well as trying to get an idea of what things might look like at higher or lower degress of vision. I've asked my parents many questions about their 20/20 vision, and I've tried to imagine 20 25 or 20/30 to 20/50 from what I have seen throughout the years through monoculars and some binocular systems. I realize that magnification is not exactly as it would be with the human eye pulling in such distances. However, it has given me an idea of how things might look in detail at these distances.
Within the past few years, my vision has gotten worse. I can recall 20/200 vision in detail and how things looked many years ago when my peripheral fields were less spotty. I can also recall how blurry things were after cataract surgery and before yag laser treatment when detecting sidewalk and grass was becoming a major problem. I believe these experiences not only have helped me to realize I can function with very limited vision with the aid of adaptive skills and devices, but I can also impliments all of my senses, various devices, and low vision utilization at a higher level of vision. Now, my vision is in-between these levels, and my visual fields have become spottier within the last five to six years. I continue to learn to put everything I've learned and experienced into play to continue to aid me now.
I've answered such questions for others and appreciate sharing my own experiences with them as a means of giving some idea of how I see. However, I do make sure to emphasize that what I share is my perception and may very well be different for someone else.
Date: May 6, 1999
From: Kathy Burkleo
Hi Pam,
Thank you for your comments...and I appreciate your questions!! After my surgery, the contrast was amazing! The first thing I saw when the nurse removed the bandage was the clock on the wall. I could read the numbers! Then I looked down at my feet, and they seemd huge! Then I looked out the window and could see tress and cars, whereas before, this same scene was blurry color blobs. I had my surgery at a hospital in Medford, Oregon, which is 50 miles north from where we live. As my husband was driving us home over the Siskiyou Mountains, I was absolutely awestruck! It was a beautiful, clear spring morning. As I drove, I kept exclaiming..."Look at those trees! They are all different colors of green! Look they have leaves that are wiggling!" The brightness was awesome. We had to stop and buy a cheap pair of sunglasses because it was so glarey. As we got closer to home, I noticed houses that I had never seen. My husbands face looked different. When my children arrived home from school, their faces looked different! My youngest daughter had freckles across her nose I had never seen.
After not having been able to drive for months and months, I could drive without even wearing any glasses! (My eye was swollen somewhat, so I had to wait 6 weeks before getting glasses. As the awelling decreased, things became a little blurry, but that was fixed with my glasses.) I drove to my work and went inside. I felt really funny without glasses, as I have worn them since I was 2 yrs. old. Everyone looked so different! I had really depended on recognizing people by their voices and general shape. It was really weird being able to see their faces.
Since then and even now when I see someone I haven't seen since before my surgery, I don;t recognize them until they talk. THen I have to explain.
Another thing that was, and still is, awesome, is the Fall season. There are mountains surrounding the valley in which we live. I had always seen them as blurry brown humps. Well, guess what?! There are tress on the mountains! And in the Fall, I can actually now distinguish dark green, brown, and a blazing orange on the mountainsides.
Another thing...the sky is sooo blue. And at night, there are actually millions of stars in the sky! Personally, I an really grateful to God for allowing me this true miracle in my life...to be able to see His splendid creation more clearly.
Some of the clarity dissapated as my eyeball's swelling went down. Now, even with glasses, the initial clear sharpness is not as remarkable. Another thing I have noticed, too, is those spotty things you mentioned in your peripheral vision, I am more aware of those now in my vision.
As far as close work, like reading or sewing, I had gotten real used to reading with the book or magazine right on my nose. I have fairly strong bifocals, but reading smaller print, threading a needle are a challenge. Also, I need and use a larger computer screen.
All in all, though, it has been amazing!! I'm not complaining at all!! Since my visiual field hasn't changed, I still bump into things and people. I still miss things when people say "Oh, look at that over there." By the time I try and figure out "That" amd "over there" I get, "Oh, you missed it!" I really use my prescription sunglasses when it is cunny and glarey. I use my computer glasses with the computer. So, I am always juggling glasses...but that is just OK with me!
Like you mentioned imagining what people see, I often wonder what binocular vision and a wide visual field is like.
In conclusion, I am still awestruck daily at what I can see now. I have never in my life seen so clearly.
Date: June 19, 1999
From: Bethany Stark
I have twin sons with ROP. Last week we went to their retina specialist and a new optometrist. My son, Yale, HAD a prescription of -4.00, which was measured about 7 months ago (he's now 2.5). The new optometrist, who has an excellent reputation and told me that she got a fantastic refraction because Yale sat very still, measured his refraction at -19.00!!! The retina specialist said that his eye was the shape of someone who is very nearsighted, so he backed the optometrist up. Neither of them seemed shocked and said that it goes along with being preemie, and could get worse. I do trust these people and intellectually believe that they are right, but....
Here's my difficulty. At the EI center he goes to, they were in shock and said, but it seems like he can see pretty well, he puts pegs in a board and he was climbing up steps without looking down. Where I go to get his eye glasses filled, they were in shock. "Oh, that is sooo strong, and changed so fast..." When I tell Yale to pick up something off a patterned carpet, he reaches right down and gets it. I don't really know the function of someone with -19.00, how much or how clear, and how much he might be going on visual memory in some situations.
We are still waiting for the prescription to be filled, probably a week or so before we get the glasses. He hates wearing his current ones, which, according to the two doctors, are much too weak. My DH says that we'll know if the new prescription is really off, or if it seems to help by Yale's interest to wear them.
I'm interested in people's experience in this area. Has anyone had a prescription change that fast? The doctors were not at all amazed; weren't interested in retesting etc. Could the prescription be off, or are these other opinions, lay people who haven't had experience in this area? I'm sure a -19.00 doesn't walk into an average eye glass store very often. Any thoughts?
Date: June 19, 1999
From: Sarah J. Blake
The average person may not realize what a difference the correct glasses prescription can make until that prescription is found. That's just my humble opinion, of course, but there are some things which may be hard but not impossible for a child who is near-sighted. Those things might be tons easier with the right pair of glasses.