Reader question – myelinated retinal nerve fibers
I’m reposting this comment from Stacy in hopes that others will have information for her. -Ann Z
I have a 15 month old son, Ethan, and we just had our first visit with a pediatric ophthalmologist. I feel very disappointed, frustrated and scared after this appointment. We took our son to the ophthalmologist because his left eye turns in. I was not terribly worried because I had amblyopia as a child and anticipated that at the most we would be patching our son’s eye. The eye doctor told us that Ethan’s right eye has 20/20 vision, but his left eye is extremely nearsighted and that he had something called “myelinated retinal nerve fibers.” The eye doctor told us we would need to patch his right eye and that he would need to wear glasses with a Rx of -8.5 in the left lens. He told us we could “read up” on these myelinated retinal nerve fibers as it is a rare condition. He also said that with patching and glasses (6-8 hours a day) that a reasonable vision expectation for Ethan would possibly be 20/50. I feel lost. All I can find on “myelinated retinal nerve fibers” are medical journals full of jargon that I do not understand!!! I’m still unclear as to what Ethan’s actual diagnosis is or how long we will need to patch and wear glasses. All I know is that I am to return in 2 months to check his vision again. We are seeking a second opinion. But has anyone been told their child has “myelinated retinal nerve fibers?” Any help would be soo appreciated! I feel defeated.
Hi Stacy! Rest assured that myelinated nerve fibers is one of the most benign eye conditions there is. Shame on your doctor for not explaining it better and leaving you with such a feeling. Basically it’s an abundance of nerve fibers in the retina (back of the eye) and it gives off a very highly reflective appearance when we shine our bright lights in that eye. I’ve seen many patients of all ages with this and it’s just not a significant problem of any kind. Where do you live? I might be able recommend a good optometrist in the area. Someone that can give a great pediatric eye exam AND have plenty of time to answer all your questions.
Jason Deviney, OD
Hi Dr. Deviney,
Thank you for your reply. This is very encouraging news as I have been pretty devastated the last few days. I had no clue that his left eye was so myopic as his eye turn is subtle and probably would not have sought an eye doctor except for that our pediatrician mentioned that his eye was turning and might want to get it checked. We live in the Houston area and a recommendation would be wonderful. I am interested in getting the best possible care for my son. My husband and I discussed also having an eye doctor look at our eyes to see if we had the fibers or any other similar issues as Ethan.
We had a second opinion yesterday. He basically gave us a similar diagnosis, but his prescription for eye glasses was a -7.0 instead of -8.5 like the first doctor. However, this second doctor was much more sensitive to us and much more willing to talk. His take on the myelinated retinal nerve fibers was that he wasn’t sure if it would affect Ethan’s sight or not. He also mentioned that the optic nerve in his left eye also looked slightly smaller, but couldn’t be completely sure whether that would necessarily affect his sight either.
We have patched Ethan for three days in 6 hour stretches. So, far he has done well and the eye straightens almost immediately with patch. For as horrible as the doctors have told me his sight is in that left eye, I expected him to not get around as well as he does.
Sounds like you found someone you are more comfortable with. I practiced in Kingwood for 9 years before moving to the northeast and I was part of the Vision Source network of eye doctors: http://www.visionsource.com. All good docs, but some better than others with pediatric patients.
Probably one of the most thorough eye exams you could get would be at the University Eye Institute: http://www.opt.uh.edu/uei/services/pediatrics/index.cfm on the U of H campus.
Did either doctor mention a contact lens? As overwhelming as that may sound, it can be much easier to adjust to one thick lens on one eye and a clear lens on the other eye. Glasses can create quite an imbalance that the brain can have a very difficult time adjusting to. I found a couple of great videos: http://www.opt.uh.edu/uei/services/pediatrics/index.cfm and http://www.youtube.com/watch?v=F79Tzy2i7bI&feature=related. I marvel at these parents…
This was the other video about an infant with contacts…http://www.youtube.com/watch?v=sxHnoJP4t7I&NR=1
My six year old daughter was diagnosed with a mylinated nerve fiber with a -8 perscription in December. I give permission for the blog owner to privately pass on my e-mail address to you. I too was told that it is a rare condition and at a future appointment they will be bringin in a medical photographer to document her case. According to our PO the nerve problem really isn’t a big deal. Her brain was receiving fuzzy images from that eye and caused the amblyopia. However, with patching and glasses she has a good prognosis. You are so lucky to find out that your child has it at such a young age. It will make it easier to treat.
She patches 4 hours on school days and 8 hours on weekends. She has her follow up appointment tomorrow, but it appears that she already has considerable improvement.
Hi Melissa!
I received your email address from the blog owner and will be emailing you shortly as I’d like to exchange some details of treatment and the improvement you’ve seen in your daughter. I can’t tell you how encouraged I am that someone else has heard of this condition. After the first diagnosis, I just felt crushed as except for the slight eye turn in his left Ethan gave no indication of a sight problem – no squinting, no turning the head, no balance issues or even holding objects close to his face.
THANK YOU, THANK YOU, THANK YOU, THANK YOU for taking the time to read this and reply!
We have patched Ethan for three days now. He’s taken it well so far. He did a 6 hour stretch today and got around seemingly well. Although, he seemed a little less confident moving around, but he roamed the whole house and played with his toys. I worry about what he sees out of his “bad” eye and feel guilty for taking away so much of his sight with the patch. I’m hoping that he will accept the glasses as well as he accepted the patch. I just don’t know how I’m going to keep glasses on a 15 month old.
How much improvement have you seen in your daughter? Will her prescription improve with the patching? I’m concerned that if Ethan is already a -8.5 or -7.0 at 15 months, how much worse will he get? I put some more details of our second opinion in my reply to Dr. Deviney above.
We’re in Houston too!!! My daughter’s PO is Dr. Chilakapati with Kelsey-Seybold. So far we’ve only had one appointment with her, but have our follow up today. I was very impressed with her and her own daughter has amblyopia. Because of that I’m sure she is passionate about finding the best treatment options.
Right now our goal is too just improve her vision with glasses. I was so overwhelmed at our last appointment that I didn’t ask as many questions as I should have as far as long term goals. I made a written out list for today’s appointment.
I have curious about the possibility of a contact for Ethan’s left eye. Thank you for this information. Let me know if you can recommend anyone in the Houston area. I’m also waiting to hear more from Melissa regarding her doctor as she is in our area.
I would go with Melissa’s recommendation since she has first hand knowledge, which trumps me at this point. Rachel Rippey is a great doc. She has a Vision Source office on Voss Rd. She would be great to check out you and your husband.
LISTEN AND BELEIVE ME I FEEL FOR ALL OF YOU MY SON HAS HAD THIS FOR 16 YEARS HE IS MINUS 22 IN HIS BAD EYE AND WITH A CORRECTED LENS IN HIS GOOD EYE HE CAN ONLY SEE 20 30 . WE NEVER PATCHED HIS EYE BECAUSE HE WOULD NOT BE ABLE TO SEE. WE LET HIM BE A CHILD AND HE HAS ADAPTED THROUGH OUT HIS LIFE PLAYING FOOTBALL ,SCATEBOARDING AND YOU NAME IT. BE GRATEFULL EVERYDAY THAT YOUR CHILD CAN SEE . THE ONE EYED MAN IS KING OF THE BLIND. I MEAN NO DISRESPECT AND GOD BLESS YOU. WE HAVE LIVED IT YOUR DOC IS PROBABLY RIGHT ,WE HAD THREE TO FOUR OPINIONS ALL WITH THE SAME RESPONSE . EVERYDAY WE PRAY FOR A CURE BUT ALWAYS GIVE THANKS FOR THE VISION MY SON HAS.
Just to let all know, I was born with myelinated retina in the left eye. This was 1963, before they had all the advance treatments that they have today. My vision in the left eye has always been extremely blurry (cannot read or even see letters), but it gives me enough color and shape so that I have depth perception to drive (sadly, not enough depth perception to play team sports–I was strictly a track runner).
I am not sure of what the advancements are today for children with this condition. I was born too early, and today there is no treatment at the ripe old age of 47. Doctors said that even if they replaced the my brain could no longer read the signal.
The good news is, it’s not terribly debilitating, so even in your child’s worst case scenario his life will still be productive with minimal to no handicap. Many of my childhood friends had no idea I had this condition as it didn’t affect much except some minor coordination issues (which was written off as being clumsy). Only now, in adulthood, with the eye growing lazier, are people starting to notice it, but my wife says it’s not distracting, and by the time your son is in his 40s he should be comfortable with himself, as I am with myself.
i have it to and can no longer drive at 34. the vision in my right eye is gone because of the myelinated optic nerve fibers and my left eye seems to be giving up. i just wish there was someone to help all the kids that have this! but everyone adapts right?
Hi Stacy,
I too have a condition that sounds very similar to what Ethan’s got. From what I could gather from the doctors I’ve seen over the years, myelin in my right eye’s retina affected my fovea (the part of the retina responsible for the sharp central vision). This caused my right eye to turn inward, seeking another position that would enable it to get the best image. Left untreated, this lead to convergent strabismus (cross eye).
The image I get from my right eye has about the same clarity as peripheral vision (it actually is peripheral vision since my fovea doesn’t work right), but this never bothered me too much. My left eye works fine, so there isn’t much that my sight prevents me from doing.
The worst part is the psychological effect my strabismus has had on me. But if this can be prevented using eye patching and glasses, in my opinion, everything else is extremely manageable.
All the best and I really hope everything works out for you and Ethan.
I was diagnosed with myelinated retina in left eye in my early 20′s. The assumption was that I was born with it but there was no way to diagnose it. I just always had a bad left eye from about age 8. I am now 46.
Looking at me you wouldn’t know because there is no physical evidence at least none that is noticeable to the casual observer. I get a ‘shadow’ over images in the lower left quadrant of my left eye. If I center my vision on the emblem in the middle of license plate I can’t make out the characters to the left of the emblem. When I move my left eye the characters come into focus.
My daily life in regards to work, play, driving, sports etc has not been affected thanks to an OD who knew what the condition was and how to order my contact lens and glasses RX to compensate. I get annual checkups with mapping and visual field tests and the condition has not changed in the last 20+ years.
Of course, there’s no treament at my age. I wanted to get Lasik and was told it wouldn’t do me any good because of this condition. Hopefully for the children that have been diagnosed with this the glasses and patches will help.
All the best…
Hi, I’m not sure I am at the right place, but my 13 year old son went to the eye dr today and as explained to us he has a glowing around his optic nerves. The Dr said it was extra Myelin in his optic nerves and it was benign. I too can’t find anything on this and the Dr. sent us out for a CBC to rule out a blood disorder(totally freaked out by this) He went 3 months ago and they found it then and it hasn’t gotten worse or better, stayed the same. He goes back in 6 months unless the blood test come back bad. Any clue as to what the blood disorder is?
Thanks,
Brigetta
My 8 year old was just diagnosed with this and the optomitrist said it can mimic basal or squamous cell carinoma so he wants us to come back in 2 months. He said if it is carcinoma the size will change rapidly. This may be why your dr oredered blood work.
forgot to write he had a very slight vision problem, but does not require glasses as of yet. Said still 20/20 in both eyes.
Hi Brigetta – I do not know what the blood disorder your doctor is referring to…I’m sorry. I do know that at first we discussed the possibility of referring us to a retinal specialist to rule out the possibility of any other disorders, but since there has been no changes in the myelin and no other symptoms then our PO decided it was not necessary.
I have spoken with two OD’s who have both said that the myelin is benign and should not affect Ethan’s vision…unless it is covering the macula. Since our PO did not mention this…I’m assuming it’s not. My PO also told me that one of his former patients has myleninated retinal nerve fibers in both of her eyes and she went on to become an Olympic Gold medalist. That it had no detrimental affect on her at all. From what I’ve learned it may or may not affect a person’s vision, but it generally does not.
As for an update on Ethan’s vision, the overall news has been good. At our last visit, last month the PO tested him and said it looks like his left eye will be usable because it was tracking very well with his right eye patched. It has taken 3 months and he will finally accept wearing the patch for about 3 hours every morning. Boy, were there a lot of tears (both him and me). We have had to purchase a second pair of glasses, but he is extremely resistant to wearing them at all. So, he wears the patch alone and toddles around and climbs and plays like there is nothing wrong at all. We are due to go back in a couple of weeks…I know that we need to start working harder on the glasses but it’s difficult because he sees so well out of his right eye and he’s really not old enough to bribe yet.
Hi Stacy – We have just found out that our 4 year old son has the exact same condition as Ethan. We found out by accident as his eyes were twitching and blinking, we checked it out. Turns out the twitching and blinking was just a seasonal allergy and he got drops to fix this. But the rest, we had no idea! We were sent from one specialist to the next for final confirmation, and were told that he has myelinated nerves in his left eye coupled with nearsightedness of RX of -8. His right eye is absolutely fine. We were told that he is not using his left eye at all at this point and can see pretty much nothing from it (mainly because his brain has switched off from using it)
This is how I understand the problem (from the explanations of my doctors):
- the myelination and the short sightedness are 2 different things. It is not know if one caused the other or if they had any connection to each other.
- in your body, all nerves are covered with a myelin sheath to protect them, except in the eye. This is because the myelin is opaque, not ‘see-through’ and is whitish in colour. With myelinated eye nerves, the myelin has continued to grow in the eye when the eye was developing, when it shouldn’t have.
- you are born with it. It shouldn’t grow any more or any less after birth. It is what it is.
- the nearsightedness is because of the shape of the eye. A nearsighted eye is longer than a normal eye. This can be treated with a lense, to bring objects back into focus, like any other person wearing contacts or glasses.
- it is not known how much the myelination hinders sight, if at all. I saw a photo they took of my sons eye and it is almost all white, except for the middle part. Even though it was the most severe case this specialist had ever seen, he said that the most important part for sight was in middle and in the middle my sons nerves looked healthy and fine. So it is hard to understand if the shortsightedness or the myelinated nerve was the main cause of Jacks lack of sight in his left eye.
- Also, because he has -8 in the left eye and perfect vision in the right, the difference is quite great, which means that the right eye has taken over seeing and the left eye become lazy – wondering off occassionally. This is a problem in that if you stop using your eye, the healthy nerve cells can die off. If you don’t use it you lose it.
- So, to fix is lack of sight, we have to fix the short sightedness and train the left eye to work again (and that means training the brain). So that when you have trained the brain to use the left eye, at least it will be in focus and he won’t want to ditch it again. Hence a contact lense (for focus) and patching (to train the brain to use the eye). There is no way of fixing the myelination but if we can fix the other 2 problems, there is no reason sight can’t be brought back – by how much who’s knows! (as it is not certain that the myelination actually hinders sight or to what degree)
- My doctor recommended a contact lenses and NOT glasses for the same reason as Jason Deviney outlines above. That the difference between the good eye and the bad eye is so great (-8 and perfect vision), glasses can seems a bit ‘wierd’ to the brain. Of course I found this very daunting to teach a 4 year old to use contacts! It might be easier for a 15 month old to wear contacts as they seem to allow you to do more to them than pre schoolers. My son keeps screwing his eyes up when I put drops in, let alone contacts!
- I also found out that the development of the eye is not complete untill about 6 or 7 years of age, so catching it early and correcting it early is a huge step forwards. You’ve caught it at 15 months which is great! My son is 4 and we never even knew! One consolation is the fact that we never even knew – ie it has not hindered Jack in life at all. Jack is a very talented golfer at 4 years old, he is very sporty and can hit a tennis ball and even a squash ball unlike any other kid I know. So if he can do that now, what will he be able to do if we can improve his sight in the left eye.
Anyhow, hope that all makes sense. I’m not a doctor, I’m a mom with a kid with the same problem and feel exactly like you do. I’m glad I found your post as there is not much out there on the condition.
I have ordered the contact lense and am trying to find a good doctor to teach a 4 year old how to use them! Once Jack is comfortable wearing the contacts for most of the day, we will start patching the good eye. We have to work it up to 3 hours a day.
Your original post was back in February so I guess you are much further down this path than me. I would love to hear your outcome so far as the most uncertain part about all of this is not knowing whether it will work or not and how much sight can be regained.
Hi Andy,
Thank you for you comments and it is encouraging to hear that your son has done so well despite his vision problems. After talking to many doctors, we have also been told pretty much the same thing you have regarding the myelination. Generally, the doctors that I have talked to have said that it really doesn’t end up being a big deal for the patients they have seen with it. Ethan’s current doctor had one previous patient with myelination in both eyes and she went on to become an Olympic gold medalist ice skater. So, I guess they really don’t know much about it because it doesn’t occur very often.
As for Ethan’s prescriptions, they have changed from -8.5 to -7 and now the doctor believes he might be a -4 or -5. It is really difficult to tell what Ethan’s actual vision is in that left eye because he cannot take a proper eye test and tell us what he actually can see. So, we probably will not get a completely accurate answer regarding his vision in that eye until he is about your son’s age.
I asked about contact lenses, but our doctor really encouraged us to use glasses so as to protect the vision in his good eye. He’s a toddler and he is clumsy. But so far, I cannot get him to wear his glasses for anything. So, right now we are just working on patching. I can only get him to cooperate for about two hours a day. I will start increasing the time little by little or it turns into a major battle. I will be eager for when he is a little older and I can actually bribe him to wear the patch and glasses. So far, the doctor has been satisfied with the patching and has noticed that when patched he uses that left eye pretty well.
When the doctors first told us to patch Ethan they said that we might want to consider getting him a helmet or padding the furniture because he would be falling and running into things and just having a terrible time of it because his vision was supposedly so nearsighted in that eye and he wouldn’t really be able to see without the aid of glasses. I must say that Ethan has not once fallen or run into anything since we have been patching him without the glasses. He pretty much behaves exactly the same with the exception of annoyance with the patch. He doesn’t behave as if he has a vision problem at all.
As for the patching, I do believe it works well. When you cover his right eye, the left eye tracks very well. Also, sometimes when he is watching tv just for the fun of it, I will obstruct his vision in his left eye with my hand and he will now push my hand down…. It used to be that you could put your hand in front of his left eye and he would not notice at all or try to push it out of the way. Other people have noticed too that his eye seems to be more straight than it used to.
The other issue with Ethan’s eye besides the nearsightedness and the myelination is that the optic nerve is smaller, too. The doctors cannot say definitively whether this will actually affect his sight either as the nerve can be smaller in one than the other and still have perfectly fine vision. We will just have to wait and see until he gets old enough to tell us what he can see because right now we are really just guessing.
The whole situation is tender for me. I worry and it was heart breaking at first, but overall I have seen improvement and so has the doctor. But I agree….the most difficult part is not really knowing the outcome of all this.
Hi Stacy – You Are Not Alone!!! our 5 yr-old received the same diagnosis in late oct.2010. Our specialist in Indianapolis also talked about the same process of glasses and patching. And, apparantly can have really good results. I like you was overcome with all the questions and concerns. But they truly do seem to have made strides in dealing with this.I always think the waiting is the hardest. Even with Ethan being so young; our children are very resiliant when given a chance. Our situation is a bit different now as I believe we experienced a miracle on our return visit to recheck. His doctor couldn’t believe the improvement and we told him our son had been praying. God’s word says “faith like a child”. What a testimony to me and the doctor. Email me if you’d like to talk more!! I will be praying for Ethan and you. And I am sure Nathanael would love to do the same. I will share this with him tomorrow.Please let me know how things go. I would be happy to ‘email pal’ as you journey through this! with true understanding, Tammy
Hi Tammy – Thank you for responding. Your son’s news is very encouraging. How wonderful for you all! We have been trying to patch Ethan for a year now. At first, it was not difficult at all, but now he really fights it… and forget about getting him to wear the glasses. Mostly we get about 30 minutes a day and if we are very lucky he will wear it two hours, but that seems to be more difficult to do lately. I try to remind myself that he is only two years old. The worst part is the waiting… especially because Ethan does not yet have the verbal skill yet to tell us what he actually can see. I try to comfort myself with the fact that when he does wear the patch it does not seem to inhibit him at all… he does not run into things, trip and seems to get around just fine. Hopefully, when he turns three at the end of this year we will have a better idea of what the vision is in his affected eye.
I would love to exchange emails with you. My email is stacy@mihosan.com And thank you for the prayers.
I would love to hear how this turned out and if there is anymore info or options. My 19-mo daughter just got diagnose a couple days ago and I too feel lost. I was told that glasses/lenses would not be of help and patching is the only thing to do. I am also concerned about the rate of progression – I hope that it does not progress. It was a blessing, after all the websites, to see this and hope for a response of someone else living it. Thank you and I hope you have had success
Stacy and everyone else,
To PS- I’m sorry to hear of your daughter’s diagnosis. With treatment, your daughter should make good progress, especially starting treatment at such a young age. Glasses are a HUGE part of treatment. Without them patching will not be effective. By using a combination of glasses and patching, you should see some improvement by your next appointment.
I posted here over a year ago that my daughter was diagnosed with a myelinated nerve fiber and amblyopia. It’s been a long time and wanted to update everyone on our progress. My daughter was diagnosed in the fall of 2009 at age six. Her vision in her week eye was 20/400. We patched 4 hours per day during the week and 8 hours on weekends. Within 6 months she made improvement to 20/125. Once we got to that point (now 7 years old), she made no more progress. The myelanation in that eye is very severe along with a few other defects so it looks like this is as much progress as we can achieve. However, I’m very pleased. She is able to see 20/20 with both eyes with glasses and will have no restrictions growing up. We have slowly cut out patching and now my daughter is able to be a normal glasses- wearing 8 year old.
Hi Melissa – I’m so glad to hear your daughter has had such good progress! That is hopeful. It’s wonderful that she can see 20/20 with glasses!
PS – Be happy that you caught this at such a young age! Everything is too soon too tell with Ethan. We started this process a year ago when he was 15 months. We have a difficult time getting him to patch right now or wear glasses. It was much easier in the beginning before we got into the terrible twos! I remind myself that he is still a toddler. We wear the patch everyday. I’m hopeful that he will wear the glasses more this year. We go through phases with it.
If you can get your child to do anything… the patch is most important. Because unless that eye is forced to be used then the brain will continue to ignore it and eyesight will continue to diminish.
It’s difficult to know how much improvement we have gotten with the patching just yet because Ethan is still too young for a true vision test. So… as far as numbers go… I can’t really tell you until Ethan can tell us what he can actually see. (This should be the same for you since your daughter is so young) They made a starting guess of -8.00 initially, then thought that Rx was too strong and we got our second pair of glasses of a -4.0.
I can tell you that while patched my son sees much better than the doctors said he would… I have the sneaking suspicion that his vision may not be as bad in that eye as they diagnosed. It’s difficult to test the eyes of a squirming uncooperative toddler! Our doctor has been very happy with the progress that Ethan has made. He tracks well with his eye patched which means that his brain is not ignoring that eye.
I have to be honest with you… this has been a difficult path but necessary one… In the end, you will know that you have done everything possible. There have been days where myself and my son have both dissolved into tears. There is no quick fix. In the words of Ethan’s doctor, “This is a marathon not a sprint.”
Thank you all so much for your responses and sharing your stories. Wednesday was our diagnosis, our daughter was ill after that so we have patched for 2 days so far and she is doing much better than we thought she would. She obviously uses the weak (right) eye as we have stood back quite a ways and pointed to parts of our face and she tells us what they are. I am hopeful. Our recommendations were to patch for 3 hrs per day, to not hinder her left eye from continuing development that is in process. I specifically asked him about corrective lenses the day she went to the OR for her sedated exam…b/f I researched and found all of you…and he said that they would not play a role. I do not want to offend him but I do want to bring up the subject of glasses. Again, thank you for this blog site as I feel an instant confort and bond. I will keep checking and will keep posting along the way. Best of luck to all of the little ones and the parents as well.
My son was also diagnosed at the age of 2. We took him to the eye doctor because his left eye was turning in slightly. The doctor here did not tell us very much except that it was “unlikely” for him to see well from that eye regardless of patching or glasses but “we will try”. I obviously got a second opinion at the IWK childrens hospital where they explained it a little better. He patched 5 hours a day and is now (at age 5) down to 2 hours a day. He wears glasses with a -7 perscription, the same perscription as when he started. He has gained vision back in the eye however it is not very much. I must say he is excellent for wearing the glasses, he does not like the patch of course but he does wear it. They also told me at the IWK that they wanted to send him for an MRI within the next few years to get a better look at what was going on. This obviously has me very worried. I just got the letter in the mail that he is scheduled for his MRI appointment next month. Just curious if any of your children had to get an MRI? I dont even know exactly what they are looking for, they just said “to get a better look”. Any information would be very much appreciated!!!!
Hi,
I am an Optometry study so I can give some information on the condition.
Myelinated nerve fibres affects approximately 1% of the population and the vast majority of people will have no symptoms. The condition is typically stable and very unlikely to change. Myelinated nerve fibres is associated with short-sightedness, amblyopia (lazy eye) and strabismus (also known as a squint i.e. one eye is turned in the wrong direction). In 80% of cases it only affects one eye. There is a genetic link so family members are more likely to have the condition. If the myelinated nerve fibres are not near the macula (central part of their vision) then there is no need to worry.
The patching of the eye is for amblyopia. This is where the brain mainly using one eye. In order to make the brain use both the good eye is patch, forcing the other eye to work. This will not treat/do anyting to the myelinated nerve fibres.
The MRI might be to look behind the myelinated nerve as they stop us from seeing behind then and therefore just a check to see the disc is healthy. However this is just a guess and i am not really sure at all.
I hope this helps,
David
Sorry about some of the misstakes but i am dyslexic
It’s been almost two years since my original post and I wanted to provide an update on Ethan:
Yesterday we learned that Ethan is a candidate for experimental PRK surgery to correct refractive errors in his left eye. As most of you know, Ethan is highly myopic in his left eye and his right eye is normal. He wears an eye patch every day. He is supposed to wear glasses but he is noncompliant because well… he basically only uses his right eye for vision and is virtually blind in his left eye. He also has myelinated retinal nerve fibers which spared the macula, but his fovea looks slightly “grainy”.
After seeing several pediatric opthamologists and a retinal specialist which we were referred to by one doctor who told us it could be retinoblastoma but thankfully was not (which is some scary shit and I literally didn’t eat for a week but managed to shit every hour), it is basically a borne out conclusion that Ethan’s case is not at all typical and needs more than just the standard treatment of a patch and glasses to give him any results.
So, we have been dealing with this issue since Ethan was 15 months old… a little over 1.5 years. During the course of this time, I got several recommendations for a Dr. Coats at Texas Children’s Hospital. After some recent doctor visits where the doctor basically wrote off Ethan’s left eye and suggested we treat it cosmetically and that we confirm that it was not retinoblastoma (which we did by seeing the retinal specialist)… we were left feeling very defeated and crushed. We got an appointment with Dr. Coats. We had to wait a month to get in to see him. It turned out to be a good decision and I kick myself for not calling a year ago. Although, he basically confirmed that Ethan’s course of treatment will probably not be enough to give him vision in his left eye, but he did give us another option that could help.
As it turns out, Dr. Coats’ wife – Dr. Evelyn Paysse – is also a pediatric opthamologist. For the last 14 years, she has been conducting a study of PRK in young children who are severely myopic in one eye. PRK is not FDA approved in children and is considered experimental. The surgeries are done once every three months because Texas Children’s Hospital does not own the laser necessary to do the surgery and they bring it every three months to do it. The surgery has gotten good results…. as good as 20/40 in one child who had otherwise been written off. So, this is by no means a “fix” or a “cure” for Ethan’s eye. It may help him, but it might not.
We met with Dr. Paysse yesterday. She was wonderful. Very kind and established an instant rapport with Ethan. She decided he was a good candidate for the surgery. We are now waiting for the coordinator to call us and let us know when he can have the surgery and it will most likely be February.
I’m trying to manage my expectations about all of this. I am coming to terms with the fact that Ethan will probably never have 20/20 vision in his left and he might always be exclusively dependent on his right eye for vision. Although, I still find myself randomly close to tears when I think about why this happened with his eye or what it would mean if he lost his vision entirely. I’m beside myself that we found these doctors, but I’m also afraid to hope, too. After all said and done, we will still have to continue patching and he will probably always have to wear to glasses to protect the vision in his good eye because his left eye will never be “normal.” We will just have to see… Wink
Anyhow, if you know anyone who finds themselves in a similar situation as us (although that is unlikely because Ethan’s case is like less than 1% of the population) or anyone whose child has vision problems… I would very much recommend Dr. Coats and Dr. Paysse.
I will let you all know after the surgery how he progresses. Or if I get any more information regarding the surgery.
Stacy, I’m the one in Houston also. I no longer have your contact information. I’m wondering if you still have my email address or if Little Four Eyes could please forward my email address to you. We were about to give up treatment. My daughter will be 9 in March and things aren’t improving. Her myelinated nerve fiber is very severe so I don’t know if there’s anything that could be done, but I would like to keep up with your son’s progress and see if you have any improvements. Best wishes!
Hi Melissa,
I looked for your email address and I found. I’d like to be able to pass updates on to you. I will send you an email so that you can email me back. I’d also like to hear how your daughter is doing. I am also curious as to what she tells you that she can see when her good eye is patched. How bad is the myelination? Does it cover the macula?
I have mixed feelings about all this. On the one hand, I’m so excited that this might help him. But on the other hand, I’m also afraid of being disappointed if it doesn’t work for him. His vision is very bad in that left eye. I believe they think it’s about 10/400… which is really just horrible. We will still have to patch and we still have to get him to try and wear glasses (although the glasses will not need a prescription… I don’t think). We found a really cool pair at Target in Sugarland… they are called Rec Specs. They are very similar to his sunglasses…which oddly enough he will wear.
It’s been difficult trying to adjust to the idea that his situation is so different than most kids that wear a patch and that his right eye will more than likely always be dominant and may possibly be his sole source of vision. I feel very lucky to have found Dr. Coats and Dr. Paysse. I got several recommendations for him… I just wish that I had called sooner. More than anything…. I just wish I knew why this happened in the first place.
Melissa – I must have an old email address for you. I sent you an email last night but it got kicked back to me. How can I get your email address?
Sooo glad to hear about your connection with these two doctors!!
This sounds very hopeful!
We will continue to pray for more amazing results!!!
Will need to connect on email again as Nathan has some pictures to send Ethan.
Tammy
i have the same condition have since child hood they told me i would be blind by the time i was 18 i am now 34 and just now dealing with the real fear of going blind. they patched my eye to as a child it did me no good..i am looking for help on this to now. please let me know if i can be of any help to you. if for no other reason then i have been there and am there.
We are scheduled for surgery on March 19th. I will let you all know how it goes and what kind of results we get.