I received an email from Michelle whose daughter was diagnosed recently with Brown Syndrome (a rare form of strabismus). She’s looking for other parents of children with Brown Syndrome to connect with. If you fit the bill, can you leave a comment and I’ll put you in touch with Michelle?
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My daughter was just diagnosed today with Brown Syndrome. She is 2 1/2. We will be having surgery next month. We live in Napa, Ca.
My grandaughter was just diagnosed with Browns Syndrome this morning. She is 15 mths old. She will be going back to the Dr. Dec 30 to schedule surgery the following month.
How did the surgery go for your daughter? The Dr. sounds confident on one hand and then said that the first surgery might not work, needing a follow up surgery.
Any tips?
Thanks,
our daughter has been diagnosed too with browns. it is severe but no surgery is needed. she was around 2 then. the doctor had her patch her good eye to make the browns eye work harder. when she turned 6 the doctors couldn’t believe how much improved.
Margaret,Did you go ahead with the surgery?
Hello there. My 4.5 has Brown’s and I am at a loss. She experiences sharp pain in her eye and “eye dizziness…”
Can you let me know how surgery went?
Any info you can share would be much appreciated. I am wishing you and your family a healing energy.
Thank you
Hi Meghan,
I know the intial shock can be overwelming.
My daughter was diognosed with Browns at 16mo. She is now 14 and doing very well. we had 4 eye surgeries as her case affected both eye’s and was very noticable. We did everything over the years from Patching to bi-focal lenses …etc. She is now back in a bi-focal with the cosideration of another surgery to help her retain the vision she has. The one thing about this condition that is not mentioned is that she can not see 3D movies… this really is a big deal for her since it is all the fade these days. Other then that she is a very well rounded Freshmen in High School and avid Softball player. Feel free to reach out if you have any addtional questions or would like to chat
Hello. Our son was diagnosed with Brown Syndrome a couple of weeks ago. It affected his left eye and is only noticeable when he looks up, otherwise he sees well. It was a little upsetting to learn about this, in fact, I have never heard of Brown Syndrome until our son was diagnosed. At this point, his eye doctor wants to monitor him and see him again in 6 months. Any insight would certainly be helpful and welcome!!
Thanks,
Anne and Theresa
parents of Brady
Our 7 year old son was diagnosed with Brown Syndrome in his right eye since about 2 years old. It is only evident when he looks up without moving his head upward. He has been doing eye therapy at home for several years including CVS exercise program on the computer. His doctor said today that his depth perception and vision are very good along with good eye muscle control. After pressing him, he did recommend surgery for social reasons (friends, girlfriends etc) and my wife and I are debating. Surgery would not entirely fix the problem but would help. The doctor would lengthen the oblique tendon, but my wife and I have reservations. Please let me know how your children’s surgeries went and how effective they were. Thanks, Mike
Hi Mike,
I was just curious if you decided to do the surgery? Also, what social reasons would be an impact if it wasn’t noticeable, unless he looked up? My daughter does the same thing and we can’t decide between surgery or not. Thanks
Hi Mike, I obviously can’t comment on your son’s case and of course only you and your wife can make the decision, but if it’s any help for you to know I’m 44 years old and my Brown Syndrome is fairly obvious even on looking up just a fraction. I’ve not had surgery as it’s considered too risky for me and is likely to make my double vision far worse. My depth perception and eye muscle control problems are described by the Ophthalmologist as ‘marked’ but honestly I can say that it has never affected me socially. I have a large circle of friends and have never had any social problems with the opposite sex! You’ll probably find like me, that most people won’t even notice unless you point it out to them. You’ll notice it more in your son because you know about it but the way I see it, if people didn’t want to be friends with your son just because one eye doesn’t move so good, they’re probably not worth having as friends anyway!
Hi Mike,
Hope your son is doing well.
As an adult with Browns, I wouldn’t worry too much about the social reasons. My eyes still will go “crazy” at times, and I’ve never had a non-family member say anything about it. (It does drive Mom NUTS though when it happens.) Also, I’ve never had a shortage of friends or social problems because of my eyes. I guess honestly, I wouldn’t want a “friend” who was turned off by my eyes looking funny occasionally…
Hi there,
I have a 4.5 year old with Browns and I am just wondering if you ever experience pain, dizziness, “eye dizziness” and ( my daughter) says her eye feels fat when it hurts.
Any info you have or can share would be much appreciated.
Thanks so much!
My 3 1/2 year old son was diagnosed with Brown’s syndrome yesterday. His is also not apparent unless he looks upward without lifting his head. I have been online trying to understand what would cause this since I don’t think he has always had this problem. The doctor thinks his vision is good otherwise. Our doctor indicated that they don’t usually do anything about it so I’m surprised that a doctor would recommend surgery for social reasons. Especially since, if your son is like mine, it’s rarely even noticeable unless he forces his eyes into an unnatural position. I am curious if anyone knows if this can worsen with age? Also curious to know how surgeries or other treatments have worked. Thanks, Tiffani
My daughter is now nearly 5 and she was diagnosed with Brown’s Syndrome when she was 15 months. When she looks up or to the right, her left eye turns in. She has had 2 rounds of steroid injections into her left tendon. This has rectified the problem for up to twelve months but the problem has gradually returned. Now she can talk, she tells me it ‘feels funny’ and that she goes ‘cross eyed’ when she looks to the upper right. We are about to contact our specialised again for more advise.
Hei. I have a son that is turning 9 now in january 2010. He was diagnosed with Browns syndrom in november last year. The doctors has told me that there is nothing they can do to help him and i see here that this baby girl have had injections done. I would very much like to talk to you, i live in Tynset Norway i have not been able to find anyone with Browns syndrom in Norway.
You all my wonder how it could take so long before he was diagnosed with Browns syndrome? Robin was born with this, we all could see that one of his eyes turned in when he looked up, this was not looked at as a problem in any of the doctors or health care personel we went to see from he was born, it was first when he startet school we noticed the problem. He could not read everything the teacher wrote on the board and he had problems with pain in the head and eyes, today the school are bringing in personel that can make the school easyer. He does very well despite his problems and reads and writes as well as the others.
My grandaughter (17 months)just had surgery on her eye on Thursday January 14th. Her eye was a little swollen at first but that has gotten better. Her normal reaction now is to compensate for the difference since the surgery by tilting her head sideways, before it was almost like she was looking down her nose. The doc said this is a good sign because her brain and her eye are relearning how to work together after the surgery. The actual surgery is to punch a little hole in the tendon to make it stretch out. As it heals the hole fills in and the tendon is now a little longer. The surgery is not a big deal, other than really hard on parents of such a little one. She was groggy for the rest of the day but the Doc told them not to even baby her the day after surgery. The hardest part for a baby I think is to not be able to eat after 6:00 pm the night before the surgery. I will check back in a week or so with results or changes.
Thank you for the update Lora. I’m glad to hear that the surgery went well. Even when it’s “not a big deal” it can be hard for us parents and grandparents to watch. Please keep us updated!
My 3 year old daughter was diagnosed yesterday, and we’re told there’s nothing to be done for it. Glad to find others who are dealing with this as well. I’m waiting for a call back from our ped to see if he thinks we should get a 2nd opinion, b/c i can’t believe there’s nothing we can do. I’ve seen some articles about the condition spontaneously resolving itself, and will be asking our our docs about that as well.
My daughter is 8 years old and was diagnosed with Brown’s syndrome when she was 3. They told me that they would not do anything to remedy it until she was older, as sometimes the eye can overcome the situation on it’s own. We have opted not to do anything. She likes being able to make funny faces at people to see their reactions, and it has not hampered her schooling in any way. She was originally mis-diagnosed as being far sighted and put in glasses. Luckily we had a wonderful pediatrician who thought the problem was something different and referred us to a pediatric opthamologist.
My 16 month old daughter was also diagnosed with Brown’s syndrome just yesterday. My daugther’s doctor, who is very highly regarded in his field, informed me that it is correctible through surgery, however a follow up surgery may be required: due to the fact, that once the muscle sheath is corrected, the overdeloped eye muscle that has been overcompensating for the lack of movement by pulling harder, will probably pull too far to the left after the initial surgery. The surgery, he informed me will be outpatient and (in his experience)the patient usually recovers quickly.
Hi All.
My little one (Age 4) was diagnosed with Brown’s Syndome about a year ago after a routine check up for his lazy eye. We were told that the lazy eye is operable but not the Brown’s Syndrome as it is classed as too much of a risk (I am based in the UK). I am now in doubt after hearing people having operations for it. The doctor kept stressing that it would hardly be noticeable in adulthood and should not worry, does anyone know whether this is true? Am I being fed an excuse? We will be having the lazy eye operated on and if the Brown’s Syndrome is operable I think it should done around the same time if this is the case.
Hi everyone
My daughter is now 23 and was diagnosed with Brown’s Syndrome approximately 6 years ago. When she was a baby I noticed that she appeared to have something wrong with her eye, I took her to a ‘specialist’ and was told that her eyes were fine and the appearance of one looking slightly cross eyed was because she has a wide nose bridge. This was accepted (as we are supposed to trust doctors). Anyway when my daughter attended highschool, the demands of reading, writing, exams etc caused more strain on the affected eye, leading to headaches and sore eyes. This was when a proper examination was undertaken (they thought it was a brain tumor to begin with) so we were actually relieved when they told it was Brown’s Syndrome. Now that she is at university the eye strain she experiences causes her a lot of problems, including headaches and painful eyes. Her periphial (spelling) vision is declining. This has become a disability for her due to the increased demands of academic/reading tasks. (so essentially it has worsened with age due to the increased demands on her eyes (the good one does most of the work). She has been given glasses, which have helped. She takes more breaks when reading to rest the eyes, we are now looking at computer programmes to assist her and lessen the reading load, using software that will convert written information into audio so that she can listen to readings etc rather than having to read it. Voice recognition software may also help, meaning that she can dictate her assignments, rather than having to look at computer screens for long periods while typing. Basically the answer is to find other ways to do things to lessen the strain on the eyes, which reduces the headaches and that feeling of disorientation (similar to travel sickness) that she experiences when she puts too much strain on her eyes. Hope this helps those with younger children to think about ways to assist your children in their learning.
Hi Sue, I’m a UK adult with Brown Syndrome and like your child I’ve been told that the surgery is too risky. Like you I’ve seen all these posts refering to surgery but they seem to be mostly US cases so I guess the UK views it differently. My Ophthalmologist told me that she went to a conference where a Brown Syndrome surgeon was speaking. Apparently his son has the condition but his father won’t let him have the operation!
I really don’t think your doctor is just giving you excuses. Mine’s pretty noticable to me, but honestly outside of my family only on two occasions in my entire life (I’m 44) has it been noticed. Once at school and once by an ex partner. Nobody else ever notices unless I specifically point it out. You really need to weigh the risk of making your child’s vision worse by trying to fix something that I can hand on heart say is a condition that has never caused me any major problems. Sure my affected eye is more light sensitive and more sensitive to cold temperatures. My peripheral vision isn’t as good as other people’s and my depth perception’s not too clever, (so pegging out washing’s a bit of a challenge as grabbing the washing line is difficult) and until the age of 23 I assumed double vision when looking up was normal. But these are all pretty minor things and easily solved by either lifting or turning my head or closing one eye.
I would be very much inclined to trust the doctor and I don’t think you’re being fed an excuse at all. Hope this helps.
Hi ! I am a french 46 year old woman. At about 6-7 years old, I rapidly developped a convergent strabism which was finally operated at 12 yo. After that, the left eye sometimes ran very high (not the right one)… Then maybe after my studies (the most difficult was not reading, at all, but looking at blackboard … ).I neglected orthoptical exams (I was not recommended to ..) but I did one in 2007: they noticed a large vertical shift between eyes but I felt OK. In feb. 2010, I started seeing double when driving… I had a non-successfull operation of the large oblique muscle (but being too old it is more difficult to solve) …and I have a true esthetic problem ..so I would recommend to check regularly even if you are not bothered by this disease to avoid saiting too lat. I will be operated agan… (other muscles)
Hi everyone. My son (20 months old) was diagnosed with Brown’s Syndrome today. I’ve never heard of it before, but I’m glad I’ve found this board. I was told that his is not too bad and we will have a check up in 6 months to see how he is doing. I was wondering if anyone had any experience with, or had heard anything about Brown’s Syndrome getting better or worse with time. We would like to avoid surgery if it’s possible.
Sue B. – Our Dr. (at one of the top Children’s hospitals in the country) told us today that if our son’s doesn’t get any worse he would not need surgery either. That it would not inhibit him at all from having a totally normal life.
Back again! When my granddaughter was diagnosed with Browns Sydrome at 15 mths, the doctor said was a moderate case. Just one month later that diagnosis was changed to severe, which is why surgery was chosen. (She was literally running into things and falling down because of her vision) It is now 2 weeks later and she has improved quite a bit. She is still tilting her head a little to the side which is much better than the day after surgery. She has a follow up appt. on Feb 1st.
Hello Everyone. I stumbled on this thread looking for information about Brown’s Syndrome and natural presbyopia and wanted to offer my first-hand experience to you all. This is a long post (sorry!) but thought it might be of interest to you.
I was born in 1965 with B’s Syndrome in my left eye, though it was not diagnosed as such till I was in my teens, and of course there was really no reasonable treatment at the time. During childhood I too enjoyed making funny faces and quickly adapted to a slight head tilt/chin up posture to compensate for being unable to look up in the affected eye. I am now of a “certain age” and am beginning to need reading glasses. My condition seems very similar to those here who have described the condition as being obvious only when looking up. Throughout childhood (and adulthood too) my particular condition was virtually unnoticed and my brain/eye relationship adapted to overcome very early on. I was an honor-roll student, had plenty of friends, took ballet lessons, and so forth. No social stigma. I continue to have no trouble at all with physical coordination, and the condition has never worsened or become more severe. I’m told surgery is not a great option for me now as I’ve spent so many years compensating, so I’ll just continue to live with it. As I age, I will probably not be able to adapt to progressive-style lenses, so will instead need to keep using readers and soon go to old-fashioned bifocals. For me, this is no big deal, just another aging annoyance!
All this is to say, for those of you choosing against surgery or for whom it is not available, take heart! As Beth’s doc said, this condition – when it manifests like mine – really won’t interfere with childhood development at all.
I do have a couple caveats:
- IF the condition is clearly noticeable when looking straight ahead, I could see how surgery (now that it’s less radical than it used to be) would be suggested. It was fun being able to summon the “googly eyes” at will, but also good to be able to hide it when I didn’t want it to be seen.
- Also, I was fortunate to have 20/20 vision in both eyes. IF your child needs corrective lenses, surgery for the B’s syndrome MIGHT enable him/her to better adapt to corrective lenses as s/he ages later in life.
Finally, for any Sesame Street fans out there, we used to say I had cookie-monster eyes, and it made me feel special!
I hope this information helps you all, no matter what you decide.
I read your post. My daughter is 3 and has Browns syndrome…)Sounds very similar to your case) We notice it when she looks up and to the right. I wanted to know if this will affect her participation in sports such as softball, basketball, or volleyball. I know you have to look up quite often in these sports and I am unsure if she can play these when she gets older….Can you help….maybe give me some first hand insight?? Thank you!!!
hi. margo i have just read your artical on browns syndrome and i am glad to have picked up on your storey my lovely grand daughter cloe just has been diagnosed with browns syndrome untill now i have never heard of this . as a concerned grandfather i was shocked. but was heartend when i read your storey the docters said wait untill she is a teenager she might grow out of it. as it is very mild . after reading your storey i can relax a little more. cheers christopher .
Margo, Thank you so much for sharing your insight. My son’s diagnosis was upsetting to me, but reading this makes me hopeful that his life will not be affected in any way by Brown’s Syndrome.
Margo – Thank you for taking the time to post! Reading your perspective really eases my mind about decisions I may have to make in the future for my son. We are hoping to avoid surgery at least until he is old enough to communicate if the condition is bothersome to him. And “cookie monster eyes” is great for my son who adores Sesame Street!
My five year old son has had a problem with one eye for a long time. His doctor dr. Miller thinks it is browns. I am trying to find out all i can about it.
Looking foward to hearing from you thanks Danielle
My six year old daughter was diagnosed in January as having Brown’s Syndrome. I have researched as much as possible and cannot find much information regarding the treatments or management of this condition. I stumbled upon this thread while again researching the condition. I was shocked, to say the least, that I had never noticed her misalignment. Once the doctor pointed it out, it is VERY prominent. I asked, as a mother, HOW could I have missed this? He said since she was born with the condition, she has learned to compensate by holding her head at different positions. He told me there is really nothing that can be done and that surgery is only the last resort. I have an appointment with a pediatric opthamologist to get a second opinion. I was just wondering if any of your children have complained with pain or headaches associated with browns, as the headaches and pain are why I took her to the eye doctor to begin with. She is still complaining with the headaches on a daily basis. Any input would be GREATLY appreciated! Thanks so much! — Renee
Hi! I have just been told that my 3.5 year old daughter has brown’s. Reading these posts has made things fall in to place. I thought the way she looked down her nose with her head at an odd angle and her eyes a bit “off line” was caused by tiredness and a lazy eye. I can’t believe i missed it and feel really stupid. You ask about pain. Several times over the last 2 years she has cried out with pain for no apparent reason and complained of an ouch in her head. I even took her to the doctor who diagnosed congestion! Now I feel certain this is connected because most of the occasions shen this happened she was on the floor playing and trying to look upwards. I am waiting for a second opinion from the paediatric opthalmologist and will certainly be asking about the pain.
Hello! It has now been one month since my granddaughters’ surgery. It is simply amazing how much of an improvement there is. She no longers tilts her head at odd angles. She is not falling down or running into things. There is still one more month for healing (Doc said it would take 2 months). The only thing that happens now is that her eye goes up a little too high (very rare) when she is looking up. We are very happy with the outcome of the surgery!!
PS we didn’t know if she was in pain or not because she was not talking at the time of diagnosis.
I have just read your post about Brown Syndrome and my 5 year old son was recently diagnosed with this disorder but he recommended against surgery. I hate the thought of surgery for him, but in the same breath I hate the thought that he has double vision when he looks upwards. Such a hard decision for a parent to make and I don’t know anyone else with this disorder even though they told me it is hereditary. I hope that everything turns out very well for your family and if you have any advice I would love to hear from you….Thanks Nikki
Nikki, My son is 3 years old and was diagnosed with Brown Syndrome a few months ago. We took him in just because we noticed that his left eye did not move upward when he rolls his eyes to the top of his head. My son has never complained about it until a couple of days ago when I noticed him looking at me with his eyes turned upward and he mentioned that he could see 2 of me. That is the first indication I ever had of his double vision and I had not realized previously that double vision was a symptom of Browns. Our doctor also did not recommend surgery. Because of my childs young age, he indicated that it is difficult to really get a true understanding of the impact on their vision until they get older and he seems to see fine, but the double vision thing does have me worried. I think we will wait until he is school age and see how things are going and then make a decision on the surgery thing. It is good to hear that Lora’s granddaughter’s surgery has been so successful. It gives me hope that there is an alternative to just putting up with it.
My son was diagnosed with Brown syndron a bout a year ago…he is turning 3 in a couple of months and we are now considering surgery. The doctor last year said his vision is perfect and to just minitor it. Now, almost a year later it is more noticeable and we just came back form the pediatrician who suggested to go forward with the surgery.
Hi…My son is 2 years old and just over a month ago we noticed that he we tilting his head to one side when looking at anything. We discovered yesterday that he has Browns Syndrome. The doctor has suggested that we get a CT scan done of the brain since our son only developed these symptoms now. But a another worrying factor for us is that his fontanelle has not closed completely as yet but the pead said that there is nothing to worry about as his growth is normal. Please advise if any of you are also experiencing the same problem. It is comforting to know that we are not alone with this problem.
My daughter sara was diagnosed with browns syndrom and she is 23 years old and doing just fine.
My daughter is 23,years old and diagnosed with browns syndrom just yeasterday march 15 2010. she has a lazy eye when she was born. She never had sugery done. she has done very well in school,and in college.
I took my 11 month old daughter to the eye dr yesterday. I was worried because lately when she looks upward her eyes start to go up then turn toward the sides..It really freaked me out. The Dr wasn’t really familar with it so she called a pediatric eye dr. She said that it sounded like Browns. They are just going to keep checking on her every few months for now. I’ve been checking out all the information I can find on the web and reading everyones posts makes me really think this is what it has to be. After the Dr noticed her tilting her head up to see I realized how much she really does do this. It does help to see that kids seem to do o.k with this but it still worries me.
Hello Melissa. I just took my 11 month old to the pediatric opthamologist today and he thought he may have Browns. It seems to mild but from what you described so similar. I was just wondering how your daughter was doing now, a year later? Has it gotten any better or worse? Thank you so much.
I have just found all these comments, my daughter will be 10 in May and was diagnosed with Browns aged 2, she has not had any corrective surgery (Dr did not advise it, and has used my daughter as a case study for med students) and utilises the chin up head tilting position to correct her vision, the only problem I have had is ensuring that she is in the correct position in the classroom to see the board clearly, but is doing very well in school and is an excellent Ballerina. Does anybody notice that their childrens eye appears worse in the summer and they have issues with bright lights?
Our daughter was diagnosed yesterday with Browns in her left eye at 19 months.We have always noticed that she really hates any form of light near her eyes but doctors just said that some people have a lower sensitivity to light than others.I wondered if your daughter suffers any discomfort with her eyes? as our daughter is too young to tell us.We are seeing another specialist next week so hopefully we may get a few answers.I thought you could find out about anything on the internet but in this case until I found this forum its been very hard
My grandaughter just had her 2 month check up after surgery yesterday. The doctor would like to see her back in 2 months. She is doing great. Very rarely does her eye go up in the wrong direction. He claims that her eye is slightly overcorrected (which is what he wanted). He would like to hold off on deciding whether or not she needs another surgery until that time. Once again we are very pleased with the results of the first surgery. We feel that it was in her best interest to correct the problem as much as possible.
Lora, you have no idea how nice its been to follow the results of your granddaughter. My daughter is just about to start the process and I have been very concerned. I wish we could talk with more details. I don’t know anyone with this or anyone that knows of anyone that has dealt with this, so its been hard. I appreciate the information you have given us!
Lora, That is so great to hear. It sounds like that really was the answer for your granddaughter and I hope that you see continued improvement. Thank you so much for keeping us updated.
My Son is 6 years old and was diagnosed with Brown’s Syndrome in his right eye when he was 3. We see the pedi ophthalmologist every 6 months. His is developing binocular vision with slight far sightedness. Over the years he has had incidents of “freak out” where he starts screaming about his eye and how it hurts and is stuck. It takes several minutes for him to calm down and for him to be able to open his eye and use it as normal. The last time it happened was about 6 months ago and he handled it very well. He didn’t freak and just sat it out with his eyes closed and kept trying to open them until it was OK again. I see it a lot more now that he is older. Yeah, he can do the Scary Eye thing where the left eye rolls completely back in the socket and the right is looking straight at you! Gross! I think that he hides the discomfort from me more now because he knows that it might “mean” something big. He fights anyone who wants to shine a light in his eyes…annual checkup, the school nurse after he hit his head. He has a fit at the 6 month eye check ups. He does the chin lift, head tilt to see to the left. The Dr. says that he is borderline for surgery because he seems to compensate. BUT it obviously distresses him A LOT! I don’t even know if the kid can catch because he won’t do any overhead stuff. The basket ball hoop, baseball stuff just sits there! Well we have decided to go for the surgery this summer and I am scared but think it is the right thing to do. I want him to be able to catch a fly ball if he wants, to be able to look over his left shoulder when changing lanes while driving. Lora, it is great to read how well your granddaughter is doing!! Thank you for posting! It gives me heart!
Took my 2.75-year-old Alex (fraternal twin) to eye Dr at about age 1 because his right eye had light sensitivity, where he would always cover the left eye every time we went outside. They said “sometimes kids with light-colored eyes (has greenish-blue-ish) are more sensitive than others to light, he’s fine, bring him back @ age 3.” (My gut told me that the Dr didn’t know diddly squat.) I took him to a ‘Pediatric EyeDr’ (different guy) a month ago due to the sustaining, maybe worsened,light sensitivity, & poor guy was diagnosed w/ Brown’s. Said not bad enough for surgery, & I had noticed when he looked uwards and to the side, his eyes had a ‘crazy’ look about them, I just thought they were developing and would even out. Ped Dr doesn’t think light sensitivity has anything to do with B’s Syndrome, but I do!!! He also gave me a prescription for GLASSES, telling me my son is more farsighted in 1 eye than the other, and that the way he wrote the script was such that the ‘weaker’ eye would ‘strengthen,’ in hopes that he won’t always need glasses forever. Filled script. Nervous that he’ll break them… His twin wants glasses, too, of course. Lol. HAS ANYONE ELSE HAD AN ISSUE W/ LIGHT SENSITIVITY, OR HAD A Dr PRESCRIBE GLASSES? The eye with the light sensitivity is the one that goes up like it should, not the one that stays down when looking ‘up-&-to-the-side.’ … AnaRealtor at gmail dot com. Roanoke, VA
If you read through some of the posts above, there are others who have mentioned sensitivity to light. My son also seems to have some sensitivity to light. I notice that he seems to squint a lot more when he walks out of his preschool into the sunlight than some of the other kids that are coming out at the same time, but he’s never complained about it. We just bought him some sunglasses to wear outside, but he rarely will wear them.
Thanks Tiffani!
My son also has a sensitivity to light. We were told that it wasn’t a part of Browns, but just try to get near him with a light for an eye exam! I would say his sensitivity is in the Brown’s eye. He will be fine sometimes and other times when it is really bright out he says it hurts. I had to buy him sunglasses the other day when we were out because he refused to open his eyes or go out of the building because it was too bright. Of course we had 3 other pairs in the car.
Good luck with both your little ones!
Oops, I meant in my 1st sentence, that the light affects his left eye.
My daughter is now 5 but was diagnosed with Brown syndrome when she was about 3 1/2 or 4. The first doctor said that he wouldn’t recommend surgery because too often another corrective procedure is necessary (as mentioned above). Of course if the head compensation is interfering with daily life, it’s probably worth a thought to go ahead with it. Then another Pedi Opth. first recommended no surgery because hers was a mild case (no head compensation) then a year later DID recommend surgery. There was no change in my daughter so this made me wonder what to believe. My gut instinct is to avoid surgery UNLESS it interferes significantly with her life. Tonight she complained of a burning pain in her eye, and that is the first time that has happened which worries me. She has had eye strain before but never these sharp pains. Perhaps it will be a passing thing.
I was glad to find these posts because the condition is so rare that you feel like your kid is the only one! I have one cousin that had a lazy eye but other than that, no family history of eye problems though it is hereditary.
Oh, and my daughter was prescribed glasses since one of her eyes sees better than the other and that was thought to make the eye strain worse. As mentioned above, the doctor said that the glasses would help her eyes work together better. She has never complained of light sensitivity though.
For those of you that have Brown or have an older child with Brown syndrome, how bad is the eye strain and pain? I’m sure it varies from person to person but now that my daughter is complaining of burning pain, I’m wondering how much of a nuisance this usually is for people.
My son is 6 and was diagnosed at about 3 or 3 1/2. At first they said probably no surgery, he was compensating with the head tilt. I told them that he seemed to react like it hurt him at times and was told that it was probably a weird feeling but not painful. Well once he could speak for himself he told them that it hurts sometimes (describes a burning feeling), he fights the eye exams because he says they hurt, and his eye gets “stuck” sometimes and he really freaks and cries because he says it hurts a lot. It happened just last week. And he still tells them about a time 1 1/2 years ago when his eye got stuck for a while, he really freaked out cried and said that it hurt A LOT. Now they say that the eyes are developing normally, vision is binocular with slight farsightedness so surgery is not medically necessary. But they do recommend surgery because he feels pain and gets very upset when anyone tries to do even a simple eye exam. I think the thing that sold me was the thought of looking over your shoulder to the left while changing lanes when driving. He couldn’t do that the way his eye is right now.
He has never wanted to play catch, shoots once or twice at the basketball hoop, and is not even very interested in riding a bike. I wonder if this is due to double vision from his Browns or just not a Sports type. We are doing surgery in August. I guess we will see!
Holly, listen to your daughter. Maybe now that her verbal skills are more developed she can better describe how it feels. You don’t have to decide right now. Watch her and listen to her. Maybe see how school goes. When the Doctor asked my son if we could fix his eye would he want us to. He said yes please and started to cry.
Thanks for sharing…my daughter was diagnosed a year ago (sh is now 3). I had noticed a problem when she was 6 months since her eyes seemed to work differently than my 2 other kids…and it is clear that it progressing. Every day she tells me that her her eye is “stuck” or caught…often she will self correct by closing the eye and waiting. What I dont understand is the long term implications? We were told that surgery was too risky….what does it mean to live as a teen/adult w/ Browns?
Hi…just to update you on my son’s progress. He is 5 now and our consultant has suggested he has an MRI scan to check the eye socket area and brain to ensure that it is Browns and not something else. His vision test declined and they were concerned the condition was getting worse. The consultant told us that Brown’s is not normally progressive but quite stable, so they want to rule out anything else! In answer to the previous contributor there are a number of posts from adults with Brown’s who talk about how they have adapted to the condition. This isn’t something my son has described though he does rub his eyes alot and sometimes covers one eye, I expect to equalise vision. Also Boston hospital in the US is doing a study into Browns and other similar conditions and possible genetic links. I can post details if interested.
Aw, gosh, Meg, I’m cryin my eyes out reading your story.That sweet lttle angel!!!
And thank u Holly! Holly, did u say u thought glasses made his vision WORSE? Yikes.
Meg, your son’s story breaks my heart. I so wish he didn’t have to deal with this and I wish my son didn’t either. I take heart in stories like Margo’s above and Lora’s whose granddaughters surgery seems to have been a success. I pray that your son’t surgery goes as well and that he can find some relief.
Hi all,
Just wanted to update. My son Brennen was diagnosed at 20 months with Brown Syndrome. He is now 24.5 months old and had his 2 yr check up today with the pediatrician. I have felt that his condition has worsened in the last few months and the pediatrician confirmed that today. He is tilting his head more severely and even holds his upper body slightly askew to compensate while walking. He has taken to walking along walls/fences with his head turned toward the wall/fence (not looking where he’s going) and runs into things rather frequently. The pediatrician seems to think this is him “playing” with his double vision. His eye got stuck in the “up” position for the first time (that I’ve seen) a few days ago. The pediatrician thinks the ophthalmologist will recommend surgery when we have our check up in July. I have mixed feelings, don’t want surgery for my baby but also don’t want him to be in pain or have discomfort.
I will keep updating as we have appointments. It’s so hard to find anyone with any experience with this! I’m so thankful for you all sharing your experiences with everyone!!
I just wanted to chime in again. My granddaughter Haley is doing wonderful. I believe her 2nd follow up appt is sometime next week. The surgery relieved many of the problems that Haley was having ie: running into things, falling down etc. It is very hard to place your child into the hands of anyone you don’t know let alone a doctor for surgery. If you think about it though, I believe we would all choose to do whatever we can to correct, or even help a little bit a situation like Browns Syndrome. We had 4 children who are now in their late twenties, not one of them had Browns but we had other challenges to face and I know that our decisions were based on what was best for the child at that particular time in their life. It is never easy to make a decision to have your child undergo surgery. If there is a chance that the surgery can improve or help even just a little I believe it is worth it!!
how is everything as time goes on????
Hi there, just wanted to say that I will be 44 this month and have just been diagnosed with Brown Syndrome! I’ve had it since birth, my mother picked it up at 6 months. When I looked up at her my eyes would roll. Until yesterday I thought it was just normal strabismus but the Ophthalmologist confirmed it as quite significant Brown’s. The double vision can be annoying at times but until I was 24 I never even knew I had it. I just assumed everybody else was the same! Unconsciously I have just learned to make simple adaptations; the head tilt, lift the head up not the eyes or shut one eye. The depth perception thing is more annoying. I have difficulty putting washing on my washing line, am useless with bat and ball games, car parking’s a no no and sometimes even going up and down steps can be tricky if I have to look at them. I am particularly sensitive to light in my affected left eye so I tend to have my eyes half closed in sunlight and even a hint of a cool breeze will make it water like mad. As for pain yes I do get some. Mostly it’s just discomfort. My eyes get strained easily and often I feel I need to rest my eyes even though I’m not tired. Slightly worrying, more recently I have been getting some sharp stabbing pains that feels as though it’s actually deep with the eyeball.
Occasionally people have noticed my eyes rolling and it has freaked out my mother, fellow school students and my ex. I’m sure other people have noticed as well but have been too polite to say anything. But all in all I have never found the Brown’s to have affected me in any significant way and never socially. I’ve actually grown quite fond of my weird eyes but maybe that’s just me! What has affected me socially though is that I have developed a retraction of my right eyelid in the last five years giving me a staring appearance. This does embarrass me deeply and I do avoid making eye contact with people, but I don’t know if this is related to the Brown’s or just co-incidental.
One thing that I really would like to pass on though is please think long and hard before surgery. The Ophthalmologist told me that the surgery is tricky, the success rate is low and it can make double vision worse in that whereas it only occurs on looking up, the surgery can cause it to occur when looking straight ahead which is of course worse. She said she recently went to a meeting where a surgeon was talking about Brown’s surgery and happened to have a son with the condition. When asked if his son had had the surgery the answer was an emphatic ‘no’. Her belief is that surgery should only be considered if the condition was having a significant negative impact on an individual’s life. Please note that I’m in the UK. Things may be different elsewhere.
I guess I really just wanted to say to the parents here that as an adult who’s had the condition since birth, it really hasn’t had any negative impact on my life. Sure it’s occasionally annoying, occasionally uncomfortable and I may have freaked a few people out at times but when you consider the really bad illnesses some children have to live with, it’s nothing. So if the doctor tells you not to worry please don’t. Best of luck to all x
hi my little boy has browns he is 7 years old he also gets double vision when he looks down to much as a child did you ever find that, the ophthalmologist told me that she had not heard of that before the school have also picked it up and when he gets to the bottom of the page in his maths book he is doubling his answer.hope you dont mind me asking you. nicola
Nicola, My daughter has browns (discovered around 18mo.) she is now 14 yrs and has had 4 surgeries… I see many people in post on here about the surgery being tricky and non-effective (UK vs US???) not sure if this is due to where they are receiving the treatment but can say that here in the US my daughter has greatly benefited from the surgeries. She has maintained 20/20 vision and has up until recently had no issues with the “wondering eyes”. The Dr has placed her in Bi-focal glasses to assist her in controling the eyes and seems to have assisted a great deal. She is also an elite travel softball player and the Browns has not hindered her in any way.. I do credit this to early detection and the surgeries… I would suggest that if your son is struggling in school and the double vision is that bothersome then it would be wise to seek out another Dr that is familar with Browns as the double vision is a classic for Browns. Your son and your family are in my prayers.
Thank you Tanya i am in the uk and i think we may be well behind the us when it comes to browns I shall be looking more into this to get my little boy the best treatment i can. thank you for your reply i wish you and your daughter well
Hi there,
My girlie is 4.5 and she struggles when having to look up…double vision, headaches, etc. She too, is rather advanced in other areas, yet I worry! We are at Montessori school and all of the edu materials are at eye level or worked with on mats on the floor. I believe this has been imperative for her wellness. I will be going to a specialist in PA to learn if there are any more options…so far we have been told that surgery is too risky yet there are many on this site whom seem to have good outcomes. It would be FABULOUS to hear from more folks with little ones who have gone through the surgery to get a feel for how it went and how the precious beings are doing now…
Thanks so much! If anyone wants to speak on the phone sometime…let me know!
Hi Meghan,
I understand how difficult it is when you have a doctor that does not want to treat for Browns. We ended up having to take our 2 year old to Boston, but found a terrific doctor. Emily had surgery in January and is doing fantastic! She has full range of motion in her eye and no double vision.
Emily sees Dr. Robert Petersen at the Boston Children’s Hospital – we could not be happier with Dr. Petersen – he is truly amazing. Good luck to you and your family!
Hi Erin , I just had a question about how you and your doctor determined that the benefits of surgery for your daughter outweighed the risks. I’m asking because my daughter was diagnosed with brown s last year and I have gotten two opinions from doctors saying they do not recommend surgery. But in hearing that your daughter s issue has been resolved , it makes me want to reconsider surgery as an option.
Hi Jenny, according to our doctor, he felt that the biggest risk for Emily would be that she may have needed a second surgery, in the event that her eye was not back in the appropriate position or that the lower tendon starting overreacting and pushing her eye in the opposite direction, but that a second surgery was the biggest risk for her. Emily had a very severe case of Browns and her doctor was confident that she should have the surgery.
HI!! May I ask where you are and whom your doc is?? In DE I am not having the best support…..
Thank you so much…I am so glad to hear your daughter is doing well!!!
Blessings to you and your family
My daughter has brown syndrome since she was a baby.She also has exotropia(wall eyes)and her eyes are in good health.She is 4 yrs old now and her opthamologist suggested to get 2 surgeries done.One for exotropia and the other for brown syndrome.I live in florida and Iam looking for someone who has already done this surgery.Iam not sure if I should proceed with the surgery although my previous opthomologist said if her exotropia worsens then Surgery is the best option.If someone has already had the surgery please share your experiences. if you know any good eye surgeons in florida please share the information.Thanks
I’m in FL as well. We haven’t had to do any surgeries yet, we will know more on that this summer. We don’t have any pediatric specialists where I live so we have been going to Nemours in Jacksonville. The Ophthalmology department there is outstanding. Again, I haven’t had to deal with them as far as surgeries go but they’ve been great with everything else.
Sorry I couldn’t be more help!
Thank you Beth.My opthamologist is Dr.Guggino at tampa.He seems to be good.My pediatrician highly recommends him.Still my daughter is not big enough to explain what she sees and feels so Iam yet to decide on surgery
mom2agirl, My son had surgery to correct exotropia at 9 months. The PO at that time did not recommend surgery for Brown’s. That PO has since retired and the new PO seems more concerned with the Browns than the exotropia, which surgery only fixed 25%. His 2nd surgery at 18 months was supposed to correct the exotropia and the Browns. This time the exotropia is better (not perfect) and the browns seems more noticeable to me, especially when he looks in. Also, the eyelid seems a little droopy. My recommendation to you is to get a 2nd, 3rd and even 4th opinion before deciding what to do and then go with your gut feeling on what is best for your little girl. I am not in FL so I am unable to help you out with a finding a good PO.
My daughter was disagnosed with Browns Syndrome at 2 1/2. This i believe was the result of a very traumatic birth resulting in an emergency ceaser. We did not choose surgery and she has not suffered along the way staying with the top kids in the class academically. The only difficulty now is in high school her eye becomes tired and wonders occasionally. She is training to become a professional ballerina and only recently she has said she sees double during pirrouettes and spots in her vision with bright lights. I was advised only to look at surgery should it become a social stigma for her. I am now considering surgery as it may hinder her ability in attaining her goal of becoming a professional ballerina. All in all she has a happy healthy and bright future ahead. The stats for success on surgery for this i believe is only around 80% which isnt really high enough for me. Hope for those of you out there considering this, I would recommend waiting until after the age of 8-10 years. Like Chrissy’s 23yr old daughter, she suffers with occasional headaches from her workload. Finding ways to reduce the demands on the eye seems like the best solution in the meantime. Travel sickness has decreased with age.Best of luck to everyone. Sometimes it is just some extra help with homework, patience and understanding around them and they will succeed and become confident young adults like my daughter. KERRY.
I was diagnosed with browns syndrom when I was 12 months old, they reccomended surgery and at that time they could not gaurantee my vision would be as good when they were finished, so I opted out. I am now 20 years old and was never made fun of for it. The only time you can see it is when I look up without lifting my head. I get headaches periodically from looking up to much but thats about it. my vision is perfect and no one knows I have it unless I show them.. So I don’t want any of the parents above to think they need to fix it by surgery get a few opinions they may be ok..
Can you play sports?? My daughter has the same type of case as you. She is 3…..Will she be able to c Please help. -Clintacth a fly ball, shoot baskets, or play volleyball???
Hi Clint, if it’s any help I’m an adult who’s had Brown Syndrome since birth. I have always been able to play sports; tennis, netball, rounders etc but my depth perception is affected by the Brown’s so I was never brilliant at them. I never made the school team or anything like that but neither did the majority who don’t have Browns! It certainly never stopped me from taking part and it’s unlikely to stop your daughter either. Please don’t worry, she’ll probably be just fine.
Hi everyone. Just wanted to keep you all updated on Brennen. He was diagnosed with Brown’s Syndrome at 20 months old. We went back for a check up in July (at 26 months old) and the Dr. said she wasn’t convinced it was Brown’s. We had another check up yesterday after having spent the last 4 weeks taking as many pictures and videos as possible of his eyes. The Dr’s decided that he has Duane’s Syndrome, not Brown’s. We have decided to wait and see how he develops and if he’s effected by his eyes at all before we think about surgery.
We just found out today,after a second opinion, our 4yr old daughter has Brown’s Syndrome… It happened so fast and we are already scheduled for surgery this month! The Doctor never mentioned her growing out of it or even steroids…
it is only noticeable when she looks up but she does have a droopy eyelid and one eye is larger than the other.. she also complains about pain in her right eye. Another thing.. he will be performing surgery on both eyes, something about realigning them. Our heads are just spinning right now! We’ve never even heard of this before!
Priscilla,
Just from everything I’ve read in trying to find answers about my own son’s diagnosis, there doesn’t seem to be any reason to rush into surgery. I would recommend that you get a second opinion about the surgery or put it off until your head stops spinning and you are comfortable with that decision.
Hi Priscilla, I would be inclined to ask the surgeon what he means by realinging the eyes as it sounds possible that your daughter might have what I have. My left (Brown Syndrome) eyelid was droopy, this sometimes happens with Brown Syndrome and when you have a droopy eyelid, you sometimes get compensatory retraction of the other eyelid. It makes one eye ‘look’ larger than the other, but it’s not. It’s just that one eyelid is droopy and the other is pulled up tightly giving a misaligned ‘appearance’. I had the droopy eyelid fixed in August (blepharoplasty) and I’m booked to have a Botox injection into the retracted lid this month to allow the lid to drop into a normal position. This will be tried first as an alternative to surgery.
You might find that if this is the case for your daughter, her eyes may be perfectly OK but it might just be her eyelids that the surgeon is going to fix so that her eyes will look more normal. It may well be, like mine, being done for purely cosmetic reasons. I would ask. Good luck.
Cheryl Grimes, thanks for the very useful information. I really began to notice the droopy eye on my son after he had surgery and wasnt sure if it was related to the surgery itself or to the Browns. Did you have surgery for your Brown Syndrome? Did the blepharoplasty help? Darlene
Hi Darlene, my droopy eyelid was related to the Brown Syndrome and the other eyelid began retracting when it started overcompensating for the droopy eyelid. It got worse over a period of 5-10 years to the point where my surgeon agreed that my eyes did ‘look’ significantly misaligned. The right (retracted lid) eye ‘looks’ like it has dropped down in the eye socket and ‘appears’ much smaller than the left eye but it is perfectly normal and it’s just the lid making it look like that. The blepharoplasty certainly helped, firstly by removing the droop my eyes ‘appeared’ less misaligned and I was surprised that my peripheral vision was better. I hadn’t realised the effect the droop was having. It wasn’t a massive improvement but it was noticable. Hopefully the Botox injection will weaken the muscle of the retracted eyelid and my eyes should then look normal. I’ve never had surgery for the Brown Syndrome. It was considered when I was about 12 but for some reason never happened. The Ophthalmologist tells me surgery would be too risky and to be honest as I’ve had Brown’s all my life I’m happy not to bother with it.
It does sound strange if you’ve only noticed a droop in your son’s eye following surgery. It might be that because of the surgery you’re subconciously taking more notice of his eyes or perhaps it has been caused by the surgery. It’s probably worth getting it checked, even if just to put your own mind at rest. I hope he makes a great recovery.
My 1 year old has just had the operation yesterday for Browns Syndrome, we noticed from birth and was dealt with very quick though she couldnt hav the operation til she was 1. She was 1 on Tuesday followed by the op on Friday. The eye tendon was fine then had attached itself somewhere it shouldnt of restrcting hr use of looking up. She would always tilt her head in a postition that was comfortable for her to look up. The problem of this is that medically she can get problems with her neck alternativeley they can give up using there eye as the hassle of having to put their head in an awkward position, thats why I opted for surgery as soon as possible. Her eye can now freely look up down side to side et. Her eye is swollen at the minute but she is doing well at the minute it looks worse thought the consltant reassured us that the operation was sucessful she can now move her eye it a case of learning how to use it again plus there is a chance further surgery will be required but this will be merely for cosmetic reasons I am 100% happy she had the operation will update on her progress
Joanne, my son had surgery for Brown’s about 10 months ago and it didnt really fix anything. The PO wants to do what he calls a more aggressive surgery now but has informed us of the additional risks and the likeliness of additional surgeries to fix the problems from the more aggressive surgery. I’m happy to hear the surgery worked for your little one but I am curious as to what the PO did exactly. Also, does your daughters eye droop? Darlene
Hello all! any one who has been following Lora Callihan’s posts has been reading about my daughter Haley. i have been meaning to log in since her surgery last year and am just now getting a chance to do so. It is hard to read about all these children with brown syndrome. my heart goes out to all of you.
Haley turned 2 in august. she is doing wonderful since her surgery. we only have to take her to the eye doctor once a year for a check up now (much better than every 2 months). i am soooo glad i decided to go ahead with the surgery. its a tough decision to put your baby through something like that but the doctor reassured me that it was a very simple, quick and low risk surgery. he was 100% right. the surgery took 15-20 mins. recovery a half hour. about an hour after we left the hospital haley was eating a cheeseburger and playing with her toys. she never seemed to be in any pain (the doctor said she wouldnt be). she went from carrying her nose in the air to carrying her head to the left and i was worried. i took her for her check up and he said she was just adjusting to her new found function of her eye. he was right. she was able to move her eye all directions for the first time so in a way she had to teach herself how to see again. it didnt take long!
to look at her now you wouldnt know she had brown syndrome or ever had eye surgery. she runs, climbs, swims, plays, and is a happy healthy two year old. the surgery was the best thing we could have done for her. if anyone wants information on the clinic or doctor we used let me know. he was wonderful!!
I would like too know which clinic you used and how your daughter is doing now. Thank you for your feedback! This gives us hope!
Reading all of these post make me feel alot better. At our daughters 6M check up we noticed something was wrong with her eye. The peditrician referred us to a ped eye specialist. He immediately diagnosed our daughter with Brown’s syndrom. He said it was so bad that she was starting to shut down using her vision. We had to do the patch every day for 2 hrs a day and went back for a checkup 2M later. He then scheduled surgery for a month out from that visit. A week before the surgery we noticed her good eye was looking funny and thought maybe she had something wrong with it, but dr assured us that eye was functioning properly. We had the surgery which as mentioned above was quick and painless. She went in for her 2 wk follow up and the dr told us she has brown’s syndrome in her other eye. When I told him how we asked him about that before the 1st surgery he said that the eye he operated on was soooo bad that it made the other eye look like it was functioning. My daughter’s first surgery was at 9M now we are having another one for the other eye in 1 month (she will be 15M). I am hoping all will be fine after this last surgery. Right now her eye that was operated on goes way into her head when she uses the bad eye to focus. He said once we have this surgery it will correct this. I’m just concerned her eyes might never be right.
Just said a prayer for your sweet girl, Tiffany.
Hi everyone this has been really interesting reading. My little girl was diagnosed with left Browns when she was 3/4 years old. I had not noticed anything at all when she was a baby in respect of her eyes. She started complaining of a sore eye and told me that she could see two mummys so I got her checked out. We are in the UK and we were told that surgery is not successful at all. In fact the doctor said as she gets taller she will not need to look up so much and it will be less of a problem!!!!! However at the same time she also started problems with her health and was getting recurrent fevers. She has since been diagnosed with periodic fever syndrome. We have been told that Left Browns can be genetic or acquired and there can be a link with Arthritis/Inflammation. The inflammation can cause the Left Browns. She has now been diagnosed with an Autoinflammatory disorder and we are waiting for confirmation if the two are related. As I said before I did not notice it from birth but rather several years later. Other people do notice it, in fact once during an emergency review at the hospital the Dr thought she was having a seizure because she had never seen the disorder before! I have noticed that it is less of a bother now she is taller (age 7) and she does not bump into things so much. She does however have to still take care on stairs and she still trips sometimes. I dont think personally that I would consider surgery but that is because of all the other problems that she has. It is interesting to read of other people’s views particularly as in the UK surgery is not even discussed let alone offered.
Hi Rebecca, this is interesting being a UK adult with Brown Syndrome in my left eye although mine was present from birth and touch wood I haven’t suffered with any arthritis or inflammation. I didn’t know there was a possible link. You’re right in the UK, from my own experience and from what I’ve read here, surgery is considered generally to be unsuccessful and more likely to make your vision worse rather than better. It sounds like your daughter may have acquired it later rather than having been born with it. I never complained of double vision even though I have it of course, because I honestly assumed that everyone’s vision was like that as I’d never known anything different. It was only at a routine eye exam when I was 23 that I was told that it wasn’t ‘normal’. Like your daughter I still need to be careful on stairs and steps and even now I still occasionally bump into things due to the inaccurate depth perception but that’s invariably when I’m being a bit hasty. If I take things a bit more carefully there’s no problem. Personally I have never found Brown Syndrome to be a major issue for me and to be honest if the NHS turned round to me now and said they’d do the surgery if I wanted, I’d turn the offer down.
Is there any chance though that if your daughter’s Browns and autoinflammatory disorder are related, treating the autoinflammatory disorder might fix the Browns? Hope it all works out well for her.
Hello, glad to find this post. My 5 year old daughter was diagnosed with Browns in both eyes at 3. We had noticed that she couldnt look up at all without lifting her head or left or right too far without going cross eyed. She can only turn her eyes 50% to either side before going crosseyed which upsets her and it hurts. She has adapted well and we almost forgot about it until we got a flat screen TV as she can only watch it from directly in front (she didn’t seem to have a problem with the old box curved screen variety) as she says she can see two of everything and gets quite upset. I have started to watch her more closely and notice that she will disengage once her vision starts to blur and now realise why she always wants to sit on my knee when I read to her.
I am concerned how this is going to affect her schooling. My opthamologist has advised me to inform her teachers throughout her life about her eyes so that she can be seated in the best position for her in the class, take regular breaks to give her eyes a rest and hopefully stay focused.
We have been advised that we should wait as long as possible before contemplating surgery and that hopefully as she grows her condition will be less obvious and that she will learn to make the necessary adjustements and she won’t need surgery at all, however, as her mum, I am concerned about her being teased or being the kid in the school photo with the wonky eyes. Time will tell and we will take our cues from her. I am reassured that in telling my friends about her condition most of them have never noticed.
Marg
Hello, our son Liam was diagnosed to have the Brown’s syndrome, however with a ? mark beside. Would be interested to talk to someone with similar problems. His eye disorder seems to influence his body muscle development, leaving him quite “atonic” most of the time. Would be interested in seeing some pictures also, to try to understand why the ? mark still stands in our diagnose. Thanks
My daughter was dianosed with Browns syndrome when she was 9 months old, I noticed it when she was looking up at me from her car seat and I thought, Wow she can make her right eye look off to the side while looking straight at me with the other! I took her to a Texas childrens Eye Specialist whom decided to watch her over the years. They kept a close watch on her and considered surgery but felt it would get better with time.
She is now 12 and it is bearly ever noticable, in fact my daughter has been in several TV commercials and they have never known she has brown syndrome. The side to side problem is gone the only time we ever notice it is when she looks up without raising her head, and even then there is not much difference, you have to really be looking for it…. Hope this helps some of you in the same shoes. Also, I did alot of praying, I highly suggest it, It worked for us
I am 40 years old and have Brown’s Syndrome. It was not diagnosed until I was in my 20s and I’ve never been treated for it. Over time it seems to have improved somewhat and is not as noticable. Even when I was younger, I don’t think anyone noticed it unless I deliberately tried to scare people by making my eyes go up (one would go to the side). I am surprised to read that surgery is recommended since I got all the way to 40 without the lack of eye movement ever causing a problem for me. Unless it is something that strangers will react to on a daily basis because the eye’s movement is so obviously inhibited, I would skip the surgery.
My son was diagnosed with Brown’s affecting his left eye when he was 9 months. He is now 6 and his condition has remained the same, it is only noticable when looking up to the right. I do notice his eye drift when he is tired, which has become less often as he has got older. Thanks for sharing your personal experiences I’m glad to hear that he is not alone
Hi all I have just found you all. I am an English woman who is 34. I was diagnosed with Browns syndrome at the age of 11, but have always worn glasses and had double vision all of my life. I had surgeries as a teenager and young adult as I have it bilaterally and it is not just on looking up but just off centre, I also have it on looking down to a certain degree. The surgeries took place in the UK by top surgeons but were unsuccessful. It is very common for children who do not have surgery to out grow the problem as they hit puberty and the muscal tone alters in the body. I currently wear eye glasses with prism lenses as they help the brain re focus as my double vision is also bilateral and on the hunt for anyone who can offer any advice and support.
As a child I used to adjust my posture to compensate and had depth perception issues. The problem with head adjustment is it causes a very sore neck eventually. I suffered from ‘locking’ which is also painful and scary and when it ‘unlocks’ it also causes a pain behind the eye. I also favoured my right eye as my left was harder to control so wore an opaque contact lens for some years to block out the left, and also wore an eye patch for a while.
I hope all of you with children are given teh right care and support and don’t quickly jump into surgery as it does sometime correct itself.
My grandson was diagnosed with Brown syndrome at around15 months. He has a head tilt since birth and was seen at Bascolm Palmer by a pediatric specialist in this. He didn’t recomend surgery…it will not cure it , might make it a little better…or not. He said if he looses his head tilt which is a way of compensating that could be a bad sign…meaning the brain can turn off the use of his bad eye. This is why it must be followed up closely. It can on rare occasions correct itself..and then the head tilt would be gone..so this could be good. Interestingly enough he was cleared of occular torticolis by an opthamologist. Not until we saw a specialist did we get answers..to why he tilts his head.
DO ANY OTHER BROWN SYNDROME KIDS HAVE LIMITED EYE CONTACT ISSUES?
My son was diagnosed with Brown Syndrome at 3. He is now 4 and over the last year we’re begun to notice that he doesn’t make the amount of eye contact that is normal for a three year old. We took him to a developmental pediatrician, who didn’t observe any reason to test him for autism or asperger’s. but that Pediatrician got down on the mat with my son. His teachers observed the eye contact issue. I brought up his eye contact issue with our normal pediatrician, but she never connected it to his diagnosed Brown’s Syndrome until i raised the issue with her. I am wondering whether other kids with Brown Syndrome are as difficult to make eye contact with as much son. Seeing other mommies try to catch my son’s eye or other kids take in the fact that my son won’t look them in the face breaks my heart. Anyone else with Brown Syndrome kids that exhibit social difficulties at a young age?
Eve, My son was diagnosed with Brown Syndrom at 3 as well. He will be 5 in a couple of weeks. I have not noticed any eye contact issues, but then his Brown’s is typically not even noticeable unless he moves his head in a certain direction (chin down, eyes tilted upward). I wonder if the position of your son’s eye makes it difficult for him to focus on people or objects that are close to him, or perhaps there is something unrelated to Brown’s going on. I am sorry that you are having to deal with this. My heart goes out to you. I hope you find a doctor than can get to the bottom of it soon.
Does your son look at the persons face but not directly in the eye? Maybe he is having double vision or only using one eye?? When my son does not have his patch on he only makes eye contact with his non Browns syndrome eye. Hope this helps.
Hi guys,
I am 24 years old and I live in Sydney, Australia. I was diagnosed with Brown’s Syndrome 22 years ago after my mum noticed that my left eye would not move when I moved my right eye . It was said that I was one of the very few documented cases in Australia at the time (don’t know how true that is). Anyway, all the doctors wanted to undertake surgery – partly for research purposes – but my parents would not let them at the behest of one of the opthalmologists we encountered along the way. Instead, she gave me glasses and developed a training program for my eye muscles. By the age of 8 it was totally cured. Today, I have 20-20 vision and no other problems (knock on wood). Now, I do not know if this is the result of the treatment or if I just grew out of it, but even the opthalmologist was amazed! I do know that it can be a trying time for parents but make sure that YOU make the final choice for YOUR own child. Even if you’re not as lucky as my parents and I, just remember that your children can go on to do great things with the right love and support even despite this unfortunate disease.
Good luck and all the best.
wow that is great I wish ur post had been here for us in 2005…but great that it is now!
thanks
I wanted to thank you for your post a long time ago and am just getting around to it. It is great to hear success stories. It really is important to find the right doctor and I have no doubt that the program she developed is what helped you.
Hello everybody I am writing from Hermosillo Mexico, my 2.5 age daughter was diagnosed with Brown syndrome this morning and I am trying to get information bout it because I never heard something of this syndrome before.
Out doctor said that this syndrome is something that my daughter has to live with, but I am not plenty sure of that so that’s why I am trying to research as much as I can.
Thanks everybody for the comment and this forum it really helps to people like me and my wife that we are just beginning in this
Saludos a todos
Marcos G.
my son had 2 surgeries@ 3.5& 5.5 and both seemed 100% for about a year and then other things like more double vision, he starting to talk about what he feels and what he sees more, didnt need glasses after 1st surgery but the end of the next year his vision changed to needing glasses again and still do at 9yo, was told by the Dr may need up to 3 surgeries ( that wasn’t unusual)in the beginning-but worried about wether to do the 3rd also live in Florida an Ped-/surg left the town.
I came across this thread whilst doing some research on Brown Syndrome, as I was born with it myself. I was diagnosed with Brown Syndrome (BS is what I will refer to it from now on) in the left eye, which is apparently more unusual than the right but I can not confirm this as definite.
I thought it would be worth while posting on this some of my first-hand experience, hopefully it can help those with young children that have been recently diagnosed. My BS was very prominent from birth, with a video of my eye movements being made when I was three months old, as I was one of the first babies to be diagnosed with the condition where I am from – apparently. However I’ve never had any real difficulty in my vision. When I was younger, my eyes would get tired easily enough and I also had the common “Lock” feeling when I focused on anything for extensive periods of time. The Doctors had suggested when I was around 7 years of age to have surgery to improve the movement, however with the possibility of multiple operations and the chances of things going wrong in my case where about 50:50 if not slightly more tilted in going badly, so surgery was not considered. With the use of patches over my right eye (the unaffected eye) for several months/years (I can not recall the definite amount without getting in contact with my Ophthalmist/Optometrist – however I remember it being over a lengthy period of time) the strength in my affected eye was greatly improved and bar looking upwards was hardly noticeable, especially in comparison to what it was before. I had an operation on my right eye, not the eye with BS, when I was 14/15 years of age, as a result of the discomfort of the eyes not working together and the extra strain that was added to it as a result of the BS in the left eye. As I was older when I got this operation, it did not try to correct the BS, which from experience and research does not seem curable, but merely relieve the strain in the muscles around the eye that had to do extra work (in my case my right eye). Before the operation I had not had bilateral vision, however now, five years on, I do not quite have far bilateral vision, but I do have near bilateral vision.
My operation had only been considered when it became very uncomfortable and slightly painful to have the eyes not working together, so from my own experience I would advise that jumping to surgery when BS is first diagnosed is not always the best answer, because the condition can improve as the child grows up and also through the use of non-evasive treatment (like patches etc) and especially if the child can function and work with the eyes as they are. I’m 19, nearly 20, and I do not regret putting off surgery until I was older and able to understand and partly make the decision myself, instead of having it decided for me. Also the treatment of Brown Syndrome appears to be improving as time goes on, so you may find, like I did, that the chances of a successful surgery increases the longer you wait.
As a vote of encouragement, nobody I’ve met since my treatment can notice any problems with my eyes, even some don’t notice it when I look upwards.
Hopefully this is of some use to you all.
Jelly
Hello. My 2 year old daughter was diagnosed 3 weeks ago with acquired Browns Syndrome. She had an MRI which showed completely normal, and she had completely normal blood work results for tests ordered by a pediatric rheumatologist to rule out any underlying autoimmune problems. The pediatric opthamologist we are seeing has suggested that we just sit back and wait to see if our daughter’s condition improves. Our Dr. has only seen 2 other cases of aquired brown’s and said that they “spontaneously” went away in approximately 2 -3 years, but did add that our daughter’s is the most severe she has seen. I just don’t understand this. How can something like this happen literally over night, and then have a best case scenario of “spontaneously” going away in a few years?? We are seeking a second opinion and hope that this next dr. will offer some advice on treatment. Has anyone with acquired, non-trauma related Brown’s had any luck with steroid treatment?
Thanks.
Erin
My daughter (5 1/2) was diagnosed with Browns syndrome 3 weeks ago. Today she told me she sees magical lights in her eye. When I asked her what she meant. She said it looks like zig zag lines, the color of a rainbow. She also said her eye hurt. This is the second time this has happened. The first time was before she was diagnosed and it happened through the night. I thought she was dreaming. Has anyone else had an experience like this? I know there can be eye pain but I don’t know about lights??
My daughter is only 2, so I’m not sure about the lights, but I know that she feels the most pain from this at night. Has your doctor discussed any type of treatment?
The doctor that diagnosed her said it may go away on its own. They will see her again in 3 and 6 months. It is not a severe case. Mostly noticable when she looked right at you and upwards. Our optometrist thinks the lights may be ocular migraines. Its really hard to tell in a 5 year old.
Hi Lisa,
I’ve had Brown Syndrome pretty much forever. I do see lights pretty much all the time, but honestly at this point it doesn’t bother me any longer. There has been eye pain at times for me, but mostly when I’m really tired and/or stressed and it always is a sharp pain that lasts for no more than a couple of minutes.
One thing to consider is that at least for me, the lights/pain are worse when I’ve spent a lot of time looking at any type of screen -TV, computer etc. (This makes writing term papers even more fun!) Not sure if that’s just me though.
Hope your daughter is doing well!
-Vivi
My daughter was diagnosed with brown s syndrome at 2 and a half years old. I began noticing her one eye staying straight as the other eye looked up in February. This began a week or two after she had a surgery to remove her adenoids . The adenoids are located close to the superior oblique tendon , I feel there is some connection. Has anyone else experienced a similar connection?
Hi….my son was diagnosed with bilateral brown’s syndrome at 4 years old and although we had observed problems since he was a baby, nonetheless it was a shock. It is so good to find this forum and hear experiences of parents and people with Brown’s from around the world.
My son definately has light sensitivity in bright light and has a distinct head tilt. Lately and mostly when watching TV he has been pulling at his eyes, frowning, looking down then up, covering one eye and
moving his head to different angles as he watches TV. He doesn’t complain but its so marked and he’s moving his head alot. We are concerned as he started school in sept, so will get it checked at Feb eye app. I wanted to ask if anyone knows eye exercises that can help as mentioned before? Also my son can’t seem to describe eye symptoms just now and concerned he has pain or this ‘locking’ of the eye. How could we find out?
Thank you for this wonderful forum & all the information & sharing about this condition. I do hope all the kids with Brown’s have some progress. For my son i just want to know ive looked into every option & not just accepted the ‘wait & see’ approach yet. While its good to hear people cope very well with Brown’s, the thought of him dealing with headaches, eye strain, problems with depth perception, driving etc fills me with concern for his future. Perhaps it will improve with time but in meantime want to find out more ab options, risks & success rates for surgery, even if just in US. Any recommendations of specialists greatly received… Bless you and all our children with special eyes xxx
Karen,
This may or may not be overly helpful, but please let me reassure you that while I have Browns, it’s not that big a deal and doesn’t affect me very much. Yes, I see lights all the time, but to me that’s normal. There is eye pain at times, but it’s short lasting and occurs very sporadically. I do have poor depth perception, but honestly I have learned to compensate.
I know it’s concerning to think about eye pain, strain, depth perception etc, but the reality is that I, and if you read other comments from other adults on this thread, you adapt to it and it becomes not that big a deal. (Cheryl has left some great comments.)
Hope your son does well! And if you have any questions about what it’s like to have Brown Syndrome, feel free to ask.
-Vivi
Hi,
Our son was diagnosed with Browns when he was two years old after we noticed a glide in one eye. He was seen every three months, we were told there was little to worry about. Then we were told he needed glasses which was a shock as previous visits had not indicated this.
Once we had glasses we were advised to patch one eye and he responded well, after a year we were told he no longer needed it. Another year has gone by and we are now told we need to start patching again and are being strongly advised to go for surgery by a new consultant.
We found this out yesterday after further tests. Having witnessed the tests ourselves its very clear our son has an acute problem with double vision occurring in all but a small field of vision “straight on” and fairly average 3D capability.
In addition, the consultant wants to use a fairly new kind of surgery which she tells us is 6 or 7 years old. this involves using a “stitch” method on the eye tendon that can be altered in theatre to ensure there is no over compensation of the eye movement post op. The surgeon has used this method we are told 3 times before all with positive results.
Has anyone heard of this version of surgery or knows someone who has had it done?
Any advice offered would be greatly appreciated.
His case is being referred for a second opinion to a nearby Eye Hospital, so we are now waiting for a letter from them advising further.
If surgery were to go ahead, he would need to have this under specialist care as he has a VSD or heart murmur.
So as you can imagine we are extremley concerned about surgery.
We are really still in shock as we have had so many different opinions over the years and have no idea what to do next.
Karen you mentioned a study written by Boston Hospital in a more recent post, If you could post this I would be grateful.
I should say we live in the UK, as such our National Health Service is our provider of health care. Whilst the care we have been provided has been adequate as far as I can tell, we have had little continuity so far due to home relocation etc and the number of differing opinions we have encountered frustrating to say the least.
Chris.
Hi all
Chris – your experience with your child sounds quite different with glasses and patching. I wonder if my son will need glasses as his last sight test results were lower. I haven’t heard of the operation but be interested to hear any details. I do hope it works out for your son. I am aware of the tendon expander operation.
The study is based at Boston children’s hospital and called ‘ genetic studies of strabismus, congenital cranial dysinnervation disorders (CCDDs)’ and run by Elizabeth Engel MD. If you look on the website it should come up. We are signing our son up to it as worth getting expert advice! Hope this helps
Karen
hello everyone, cant beleive how many actually are diagnosed with browns syndrome. my daughter Haley was diagnosed in 09′ and feb of 10′ she had the surgery on her eye. now she is 3 and a half and doing great!!!! i am so glad we made the decision to do the surgery. she carries her head straight (which her carrying it crooked was the first sign of me knowing something was wrong) she doesnt complain of any headaches or dizziness which ive read some have issues with. every once and a while if she is really tired i will see her right eye (the one that had the surgery) stray up farther than the left. but, that she wasnt able to move it up at all b4 the surgery and is able to move it freely now i feel content with my decision. about the surgery : it was a very simple out patient surgery. it was fast and caused her no pain or discomfort. by the time we got home that night she was fine. it took a few weeks and she adjusted to the new found movement in her eye. basicly they went in the bottom of her eye and snipped the tendon(s) that r there. the tendons were what was restricting her eye movement. they grew back together on their and that extra growth is what gave her tendons the length they needed to allow her eye to move up. as i said the only thing now is the occasional over-extension upward. i am not a doctor, i am a mother, so this description is my understanding of the process that took place. i hope this is able to help some of you with your research and decisions. good luck all
Wow! Thanks so much for your post about your daughter. So amazing to hear about a successful operation for a Brown’s patient and such a good outcome. It gives me hope…
Virginia – can I ask where you are from? We are based in the UK and from what I gather the doctors seem reluctant to operate. Yet I am questoning this and want to know more. Any details about where your daughter had surgery would be helpful too, if your happy to share them?
I would like to speak to specialists, even in other countries about the possibility of surgical procedures and it was great to read your description as a mother of the operation and its results for Haley. It is interesting to hear other peoples experience of Browns (thanks Vivi for the reassurance) and how they deal with it. Nevertheless, at the moment I can’t accept that eye strain, pain, head tilt, poor depth perception is what my son has to face. These days people use computers so much and so problems like eye strain are going to be more likely. Who knows how it will affect him with studying etc?
Look forward to hearing from you
Karen
Hi Karen. My 2 year old daughter was diagnosed 3 months ago with acquired Brown’s Syndrome. Last week she had surgery at Boston Children’s Hospital and she is doing great!Without knowing her, you would have no idea that she had any problem with her eye at all. Yesterday was our post-op check up and our doctor was very happy with her eye movement and mobility. The only concern our doctor has now is that her head tilt has not gone away, so she may need to have physical therapy for that.
I completely understand what you are feeling and going through with your child. When our daughter was first diagnosed, the doctor we had at that time did not offer us any type of treatment, just basically to sit and wait. We opted for a second opinion and now travel to Boston Children’s Hospital for all of our appointments – they have a tremendous eye center and wonderful doctors. Good luck!
Hello all,
I have a 4.5 year old girl who has Brown’s. We have been told that surgery is dangerous and not an option. This is a child who complains of eye pain, dizziness and eye dizziness almost everyday. Has anyone experienced these symptoms? Also, wondering if others are off balance a little…..any suggestions of how to relieve this discomfort would be much appreciated. We do ice packs and sometimes ibuprofen, some arnica…….I feel so bad and helpless. THANKS
It’s actually a great and helpful piece of info. I am happy that you shared this helpful info with us. Please stay us informed like this. Thanks for sharing.
My son is 8 years old and was diagnosed with Brown’s Syndrome when he was three. You cannot notice his condition unless he looks up. We were first told that surgery could resolve this, but later told it is risky. My son’s reads in the 96% percentile for his age, so his reading is not affected. He does not complain about eye pain or headaches, but recently said he cannot see the board in the classroom and is embarrassed. His classroom uses a permethian board (electronic) and I wonder if that makes it more challenging to view from his perspective. His opthamalogist told us to expect nearsightedness and that seems to be coming into place now. His gifted testing revealed superior for all but the category for forming patterns with objects. I wonder if his perception was affected by the Brown’s, or if this was a processing skill unrelated to the condition. We are so blessed with our beautiful son and don’t feel his Brown’s syndrome will affect his life skills negatively. I believe he will accomodate his condition successfully. I enjoyed reading many of your posts and now realize how many have similar experiences to ours.
Meagan, We live in Arizona and my daughters Dr is Dr. Brendan P. Cassidy (ABC Childerns Eye Specialist). He has been a leading children’s eye surgeon specialist and a blessing to our family. You may want to reach out to him or his office to see if he could provide you a referral of someone in your area? My best wishes to your daughter and your family!
Hi
I am not a parent of someone who has brown syndrome but I have it my self. I have had it dice birth and was diagnosed at a few weeks old. I am 17 now.
I have it in my left eye and I am unable to look up properly and I have very little control over my eye when I am tired.
I am in constant pain with it, I was wondering if it is worth asking to have the operation to and correct it?
Hope you can help.
Hi Daimon,
I would suggest it is worth the inqury, if nothing else you would know your options. Now from this message board it appears that in the UK it is more difficult to find a Dr who understands the condition enough to offer options. We have been blessed in the US and have had a wonderful Dr in my daughters life that has helped tremendously… My prayers are with you and hope you find some relief!
God Bless, Tanya
Hi again…I’ve been interested to read recent posts about kids who have had surgery (in the US only it seems!) and the person who struggles with Brown’s. It’s hard to read, but at least sounds very honest. Im often abit sceptical about sufferers who say I have eye strain , headaches etc but it doesn’t affect my life!? I do hope there is some options for you.
Anyhow…update on my son’s progress – after reporting changes in my son’s vision and lots of head tilting we have seen the specialist today. They have recommended an MRI scan to check the eye sockets and check what is
causing the restriction. As his Brown’s appears progressive there is some concern, apparently BS is usually quite stable. At least this way we will have more information to go on. Keep up with updates x
K swain, As someone who commented earlier saying that those sorts of things don’t really affect me (my earlier comments are under Vivi- don’t know why wordpress changed my name around like that!) I guess I’d just have to reiterate what I said in an earlier comment – you adapt to it and it becomes not that big a deal.I’ve had BS my whole life and so don’t know any other way of living, so to me it’s normal. Maybe not the best or most ideal normal, but when it’s all you know…
Hope your son’s eyes stabilize!
Hi Daimon,
I’m a few years older than you (I’m in the first half of my 20′s)and have BS, but have not had the surgery. Have you seen your eye doctor recently and talked to them about your eye pain and poor muscle control? I would definitely make an appointment and talk about it, especially if your eye problems have recently gotten worse!
Hope you are able to get some relief- eye problems are a pain!
-Vivi
My daughter had browns syndrome tell Michelle to get in touch with
Nina
our daughter was diagnosed with browns when she was 2. at age 6 it has almost gone away. the doctor said that this is unheard of. does anyone else know of this happening?
her case was severe too!
My son has had 2 eye surgeries for exotropia. They were successful for a short period of time but now he has esotropia. In addition to the eye turning laterally, it does not go up and in fact cannot even go to midline. PO wants to do another surgery that includes 3 different procedures. One is a superior oblique tenotomy. Does anyone have any experience with this? I am torn. I want to do whats best for him but I dont know what that is. Thanks in advance for any input.
I was diagnoesed with brown’s (right eye)when I was approximately 13 months old (1975). My parents elected to have surgery for me. I ended up wearing glasses and having a second surgery around age 11. I stopped wearing glasses around age 13 and have 20/20 in the right eye and 20/15 in the left. I will say that I don’t see as sharply as I see out of my left eye, but it isnt really that noticeable. I am now 37 and have served in the US Navy for almost 11 years and am currently a Police Officer in NJ. I understand that you want the best for your childrenas so I for mine…but there is always hope…I am a living example. i only hope that if you do opt to have the surgery that you have the same happen for your child/chilren that I did.