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Double vision after macular pucker vitrectomy
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Double vision after macular pucker vitrectomy

I am a 43-year-old woman. I had a vitrectomy on January 18 to remove a macular pucker from my retina and for floaters left by a vitreous detachment. As my vision began to clear after surgery, I began seeing double.  I'm seeing separate images from each eye, but they are not "meshing" together when using both eyes. I do not have double vision when I cover either eye, it's only when I try to use my eyes together. Before surgery, my vision was distorted due to the macular pucker and I had an extremely large floater, but I was not seeing double.

My retina looks fine post-surgery and the retina specialist doesn't know why I have double vision. He sent me back to the optometrist who, after seeing me, said he believes my double vision is a processing problem. The optometrist said my vision was so compromised before the surgery that my brain can't put the images from each eye together. He prescribed prisms which I should be getting this week.

I'm trying to educate myself on what's happening and am finding little to none on "processing problems" such as mine. I'm also concerned there could be more at play here since I have Lyme disease and have a first degree relative with Grave's disease.

I'm not sure what to think. I'm trying learn more and figure out how I want to proceed. Any input is appreciated. Thank you.



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I had the same problem following surgery to remove an epiretinal membrane (aka macular pucker).  Macular conditions and the surgery to correct them can cause changes in the photoreceptor distribution in the macula.  This results in changes in image size and/or shape.  When the size/shape of the images in each eye is too different your brain cannot fuse them, resulting in double vision.

A difference in image size is called aniseikonia.  I believe that your problem is retinally-induced aniseikonia.  There is little research in this area.  Dr. Gerard de Wit of the Netherlands has written the best papers on this topic (in English).  If you google his name, you can find his website.  I'd be happy to send you more information if you give me your email address in a personal message.

Treatment for this type of double vision has to be individualized.  In my own case, the image in my right (affected) eye was larger than the image in my left eye following retinal surgery.  Wearing a plus contact lens in my right eye under a minus glasses lens minified the image, and the double vision was eliminated.  I also had a second retinal surgery to remove pieces of the epiretinal membrane that had been left in my eye.  I've described my experience a number of times--check the archives of this site.

According the professional literature, prisms are not very helpful in cases of retinally-induced aniseiklonia.  But who knows, prisms might work for you.  In my opinion, your best strategy is to become educated about your condition.  Try to find an eye care professional who specializes in binocular vision who is willing to work with you.

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Thank you JodieJ for your always helpful and authoratative responses.
JCH MD
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Another recent post on this forum reminded me of something important that I omitted.  It is also possible that an injured eye muscle is causing your double vision.  In this case, there would not be a noticeable difference between the size/shape of the image in each eye.  Either prisms or eye muscle surgery would fix this problem.
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Thank you, Jodie. I've sent you a message and am reading you posts in the archives.

It sounds like retinally-induced aniseikonia could be the issue. Images from my right eye look slightly shorter and wider through my right eye with straight edges slightly bowed.

So, my next step is research and then addressing this with my doctors and/or finding another one familiar with this condition.
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Hi Jodie my name is Ruth I live in New Zealand I had surgery for a epiretinal membrane 6 weeks ago the surgeon commented that he had difficulty removing the membrane which was very tough .I suspect this is perhaps when the damage to the retina occurred . I had a gas nibble in for two weeks once this went I have had the most terrible binocular double vision . The vision in the r operated eye is about 30 percent smaller and distorted then in the good eye .
I stumbled across this site when the double vision started and diagnosed myself with retinal induced aniseikonia which the eye surgeon has confirmed, Allthough he has not offered any advice except get prisms or wear a patch
I have been to optometrists prisms don't help I am seeing specialist again mon also have contacted Auckland university  vision science and have an appt with a Dr ken Robertson (Canadian) he seems to know about aniseikonia and also has designed lenses  .I have also been on Dr Gerard De Wit site  as second option. Any information u can pass on to me would be great  also if there are any other community members with this condition  in nz I would be happy to have them contact me . Cheers Ruth
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Your eye is still healing--hopefully your vision will improve.  You might want to consult another retinal surgeon to see whether a second surgery might improve your situation.

In my own case, partially correcting the image size difference between my eyes with a +3.5 contact lens worn under a -3.5 glasses lens eliminated my double vision.  Possibly this type of solution would work for you.

I accidently discovered another option that might work in your case.  I use an Acuvue 1-day moist contact, which is so comfortable that I've occasionally forgotten to remove it at night.  More than once, I've inserted a second +3.5 contact lens and gone the entire day wearing 2 contacts in the same eye!  Amazingly, this seemed to make little (no?) difference in my vision, although I was using only my "good" eye to see.  This suggests that wearing the wrong prescription in your operated eye (using either a contact lens or glasses) might eliminate your double vision and give you comfortable binocular vision.

Dr. de Wit's paper (Retinally Induced Aniseikonia) has some other suggestions that have been helpful to others--it's not clear what would work for you.  Feel free to contact me through a personal message if you have more questions.  Unfortunately, it's been my experience that the eye care professionals in my area had little to offer me--maybe you'll have better luck in New Zealand.

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Thankyou Jodie for your reply as I said I have an appt with a specialist optometrist at the Auckland university on tues and will take you suggestions along with me also Dr De Wits paper on aniseikonia I wil post a comment and let u know how I get on . Many thanks Ruth Do u buy the Acvue I day moist contact on line I only had glasses for reading prior to my surgery
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You're so fortunate to have a specialist optometrist available to help you.  You might want to print out the information about the Aniseikonia Inspector test from Dr. de Wit's website.  I believe that your optometrist could get a free trial of this software (and perhaps a consultation about using the test results to get a prescription for minimizing the image size difference between your eyes.)

I'm sure that your optometrist will know all about ordering contact lenses in your area, and s/he will probably have samples of the major brands in stock.  There are several good 1-day contacts available now.  My eyes are somewhat dry, and I cannot wear some brands of contacts comfortably for more than a couple of hours.  However, I can wear two 1-day Acuvue moist lenses in the same eye all day (not recommended).  It would probably also be possible to give you comfortable vision with glasses alone.  Keep us posted!

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JodieJ: Thanks again for sharing your experience and research. JHaganMD
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hi Jodie Yes I intend taking the information an the aniseikonia inspector with me on tues. and I am lucky to have someone in Nz he is about 3 hours from me at the university of Auckland .Whenthis first happened I managed to stumble over your site and got on to Dr De Wits stuff from there it hen did a nz search for retinally induced aniseikonia specialists  in nz and his  was the only name popped up .the Auckland university school of optometry and vision science runs  teaching clinics at the university and so I ph and got an appt with him.Ken Robertson is Canadian he apparently developed the Robertson technique of measuring dynamic aniseikonia and designed iseikonic lesses you can google him  I feel incredibly lucky as I suspect he is probably the only one in nz. Will let you know how I go
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You are incredibly lucky!  I live in a large metropolitan area (Chicago), and I have yet to encounter an optometrist who is knowledgeable about retinally-induced aniseikonia.  A couple of optometrists actually became hostile when I attempted to explain the concept of field dependency.  I did see a very enlightened local neuro-ophthalmologist who used correction techniques similar to those of Dr. de Wit.  However, the ophthalmologists I contacted who specialized in binocular vision actually refused to see me when they learned that my problems were retinally induced.

NZ is apparently more advanced in this area than we are in the US.   It sounds like you are in good hands.  
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Hi I went to see the eye specialist  who was very apologetic said he only ever come across this once in his professional life and didn't know what to advise me .he had written and phoned Ken Robertson in Auckland also he took copies of Gerard De Wits paper on retinal induced aniseikona and the info on the aniseikonia inspector . I attended the appt with Ken Robertson who was helpful he also was aware of Gerard De Wit  Ken is trying to make me some lenses at this stage for driving did say that it would be atrial and error exercise but was happy to hang in there . My major problem at the moment is constant headaches despite taking panadol 2  every 4 hours do u have any suggestions I am trying to work and finding this a real struggle with the headaches  any suggestion will be appreciated . Ruth Solly
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Yes, getting the right correction will involve a trial and error process.

Do you have glasses now?  I'd suggest trying to wear a foil on the inside of the lens for your affected eye that would blur your vision so that you'd be relying on your good eye.  This is a much better solution cosmetically than wearing an eye patch.  Your optometrist should have foils available in a range of powers.

I don't know the extent to which my own experience would generalize to others, but wearing the wrong prescription in my bad eye provided comfortable vision.  Through some type of neuroadaptive process, my brain automatically screened out the distorted image in my bad eye.  It seemed like I was seeing out of both eyes, and I wasn't aware of the loss of depth perception.  (Apparently, there are many visual cues for judging depth.)  This wouldn't work for viewing 3-D movies, but my vision seemed to be fine for driving.  (In the 3rd edition of "The Fine Art of Prescribing Glasses Without Making a Spectacle of Yourself" by Milder & Rubin, the authors prescribe glasses with the wrong script in one eye for a physician who suffered a badly botched LASIK procedure in one eye--and it worked just fine.)
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Hi Jodie I i made my self up a lense a week or so ago out of some clear   baroque glass i do stained glass as a hobbie which does work  blurres the image but i can still see out of that eye and it allows me to drive I have it stuck in with sticky tape certainly worked better than the ones the local optometrist made up for me. Ithink some of my headache problem is that I have been trying to go without glasses in an attempt to get the brain to suppress the distorted image in my r eye headache is much better today as I had my glasses on all day this may be a helpful suggestion for others while they are waiting to get to see a specialist optometrist thank you so much for all your help and suggestions  Ruth Solly
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Hi Jodie thank you so much for all your help and advice will let u know how my driving glasses turn  out once they arrive ,again many thanks for all your help cheers Ruth Solly
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This type of correction often involves some tweaking, but I really believe that you can come up with something that works for you.  I'm always available if you have questions.
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Thanks Jodie i really appreciate all your suggestions and support idon't know anyone else with this condition and it seems difficult for others to understand how disabling and distressing it is  so it was great for me to get support from you.  Many thanks Ruth  I will keep in touch and let u know how things go with me .
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Jodie can u tell me if the retinal induced aniseikonia I am experiencing is a result of the epiretinal membrane or from the surgery to remove it . I didn't have any double distorted vision before the surgery . I had a look  on the net but couldn't really find anything . If it is due to the surgery I can get some help through acc ( accident compensation ) to help with all the lenses that I have to pay for that don't seem to help the problem .   Thanks Ruth.
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I can't give you a definitive answer.  My situation is similar to yours--I had no image size difference between my eyes (causing my double vision) before ERM surgery.  In my case, I believe that the problem was caused by pieces of ERM left in my eye by my surgeon (who was very much aware of this but never informed me.)  Apparently, the remaining ERM continued to exert traction on my macula resulting in a changed photoreceptor distribution, which produced an image size difference and double vision.  I suspected that there was a problem with my surgery and consulted several respected local retinal surgeons, all of whom told me to "go home and live with it."  (Apparently, it takes special skills to remove small pieces of ERM, and this was beyond the ability of retinal surgeons in my area.)  In any case, Dr. de Wit's correction eliminated my double vision.  Three years later I traveled to Memphis, Tennessee, where Dr. Steve Charles easily removed the remaining ERM.  Afterwards, I got about a 50% improvement in my image size difference.  I corresponded with some British researchers, who speculated that the delay between my surgeries caused some permanent damage to my macula, and I was very unlikely to get further improvement.

I think that you could make a very strong case that your surgery caused your double vision.  Let me know if I can help you with that.  Possibly, a second retinal surgery might help your situation.  
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Thanks for your reply after reading your other replies I did ask my retinal surgeon if there would could be any membrane left behind and would he be able to tell he assured me he would as I have had several scans done on my eye. I will however think about getting a second opinion from another retinal specialist.AlsoI think i will put in a claim for medical .misadventure Again Jodie Thankyou so much for your advice and support  Ruth Solly.
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Since you didn't have double vision before surgery and you do now, I think that it's fair to conclude that something about your surgery caused your double vision.  I tried investigating this issue in the medical literature, but even the retinal specialists seem to be in the dark.  My first theory was that ERM left in the eye was the cause.  However, apparently some people who develop double vision after ERM surgery don't still have ERM.  In any case, this is not a hot research topic.    
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Hi Jodie and Ruth !
I too had ERM surgery 1 1/2 years ago.  I did not have double vision prior to surgery but had a small amount after surgery that I seem to be slowly adjusting to.

The objects in my surgery eye are now a bit larger and in a little different
position than my non-surgery eye so the images, giving the perception of a double image.  My theory is that the surgeon's tugging on my retina when pulling off the ILM layer especially, upset the layers in my retina.  

The specific layers that now have a missing spot (visible on the OCT results post surgery)   is the IS/OS junction which is the photoreceptor layer that Jodie refers to.  If this layer is upset and disrupted, it is likely to cause distortion, etc.  When one thinks of how thin the retina layers are, it is logical that the surgery tugging at the ERM and ILM might disrupt it.

Just my thoughts, I would be interested in Jodie's opinion on it.
Good luck with your decisions, and keep on researching !!!
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An ERM can produce traction on the macula.  Usually, the pull is inward to the fovea.  This can change the photoreceptor distribution, which can alter the image size in the affected eye.  Some people with an ERM experience double vision before surgery.  According to the medical literature on this topic (which tends to be 10+ years old), most of these people continue to experience double vision after ERM surgery.

It's reportedly less common to initially experience double vision after ERM surgery.  One theory (expressed in the literature) is that acuity in the affected eye was too poor for double vision to occur (since double vision requires reasonably good acuity in both eyes).  Luvtoski, your theory makes sense to me.  I also believe that ERM remaining in the eye post-surgery can be a factor.  
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Hi to both you and Jodie I really appreciate all your information and support .yes luvtoski I can relate to your experience the image in my right eye also seems funny that's without the distortion and smaller image it's blurry and feels like the image is inthe wrong place .Hope I don't have to wait 18mthe to get some improvement. My eye surgeon didn't have much to offer seemed very surprised this had happened .I am still waiting for my driving glasses to arrive just hope they improve the situation . Again thanks to you both cheers Ruth
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Ruth, I have "distance"/driving glasses now too as my good eye is not seeing distance as good as it used to either. (57 years old)
The distance glasses help bring the diopters of the two eyes closer together, which seems to help my perception of the images.

What I found is that when I take my thoughts off of my sight and just "go with the flow" I tend to forget about the discrepencies enough that I think my brain merges the images better.  Not sure if this makes any sense, but with time and taking my mind off of my sight (as much as possible) I am happier and believe better.

Again, good luck to you as I totally know what you are going thru !
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Thankyou for your support I feel at the moment that my eye problems have taken over my life hopefully things will improve when my glasses turn up . Cheers Ruth  
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Hi Jodie some advice please my driving glasses arrived they do improve the double vision somewhat but not enough to drive safely there was still some doubling of cars and the road ahead was distorted with grass and trees superimposed on it a lot of the time. I contacted Ken Robinson  the opyometrist in auckland this morning he felt I should persevere so that my good eye would take over and the brain would ignore the image from my right eye which he said was my dominant eye .I now not sure that he is on the right track I have another appt with him on the 11th of sept. I did fix the problem my self in the mean time by putting two small pieces of cling wrap in the centre of thel lens I am now a bit confused if I should leave the cling wrap on or follow his advice at least around the house. I would appreciate your advice. Thanks Ruth
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I'm really not knowledgeable enough about neuroadaptation to advise you.  I can only relate my own experience.  My ERM was also in my right (dominant) eye.  As the ERM was slowly and progressively distorting my vision in my right eye, my brain did "neuroadapt" by automatically screening out the distortion when I used both eyes.

I believe that double vision is a different issue.  I think that I read someplace that young children can neuroadapt by suppressing a second image, but older children and adults cannot do this and the double vision will persist.  (You could try asking one of the ophthalmologists on this forum about this issue by starting a new thread.)

Are your driving glasses made to (partially) correct the image size difference between your eyes?  If so, it sounds like the degree of correction may be insufficient.  This type of correction worked immediately for me with glasses and a contact lens.  (If your optometrist is willing, he could probably get a free trial of Dr. de Wit's Aniseikonia Inspector software.  Your test results could be used to fine tune your prescription.

The bottom line:  you've already found something that works (the cling wrap).  In your place, I'd stick with what works.      
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Hi jodie thanks for your information much appreciated No I don 't think  the driving glasses were made to correct the image size he tried to get the images on top of one another with prisms but my brain would let this happen so he put some blurring in the middle of the lens .
I have another appt with him in Auckland on the 11th of sept . Idid take up the information on Dr De Wits aniseikonia inspector but he didn't seem very interested. I'm not sure what I should do now it's very frustrating .
                                                                                            Thanks again ruth
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It's really hard to predict what's going to work in cases like ours.  The medical literature says that prisms don't work for double vision that is retinally-induced.  That's probably true in most cases.  There's a paper that reports great success by blurring vision with scotch satin tape.  (I tried this, and it made things much worse for me.  But it apparently does help some people--I'll send you the paper if you send me your email address in a private message.)  The type of correction that Dr. de Wit does using the Aniseikonia Inspector test results seems to work best when the main cause of the double vision is an image size difference between the eyes.  

Don't give up hope--I think you can come up with something that will work for you.
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Hi jodie thanks for the offer of sending me Information that would be great.I'm not so good on the computer how do I send u a personal email.
                                                                                 Thanks ruth
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Try hovering over my name and then click "send a message."
Or click my name and then click "send a message."
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Hi I tried to send a private email  with my email address but I don't think it went . Ruth solly
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You need to use this site to send private messages.  Unfortunately, I need a real enail address to send an attachment, and that can't be posted publicly.
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Thanks for the paper on "the dragged -fovea Diplopia syndrome" very  interesting also to let you know I sent an email to Dr De Wits site to see if they knew someone in New Zealand who was familiar with the aniseikonia inspector  they have given me the name of an optometrist  so I will try an contact him tomorrow and make inquires.  Cheers Ruth 1246
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Please keep us posted Ruth...we are all on the journey to educate ourselves and your research will be helpful to us !
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Prisms initially helped to fuse images for me in certain circumstances. Unfortunately, if the one eye both distorts/warps the image, causes a size differential AND moves the image to a different location (especially in the dominant eye) all hell breaks loose, and prisms no longer help. In addition, lately all of the letters in print or on the screen look italicized backwards to me. I have not had ERM surgery yet, but have finally decided to get it done (long story). I'm hoping it will help, but the retinal surgeon is not overly optimistic, as it has been there for a good amount of time now.

What drives me up a wall is the floaters in the other eye move constantly in and out of blocking the vision in that good eye. When that happens, the brain suddenly has to adjust to the different size, shape and location of thee image it is now receiving from the dominant eye, and back again - sometimes within a half second or so - very disturbing.

After an IOL implant and new glasses, the ERM eye now sees in the 20/25 range, clear most of the time, but the distortion and placement problems of course persist. I've almost cancelled the surgery, as the eye is now "livable", but I'm still on the fence. It's hard to know what direction to take.

JodieJ is a great resource. I thank her immensely for the much valued information she brings to this forum.
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Well, it's nearly 6 months later and I'm still dealing with double vision. My vision in the affected eye is corrected to 20/25 and I still have the same distortion I had before my ERM surgery.

I've been through 4 sets of prisms since late March, none of which helped me. They only induced eye strain, eye pain and headaches so painful that I was prescribed pain medication. I ditched the prisms a few weeks ago and don't have pain to that extent anymore.

I've been to several different doctors, the latest at Johns Hopkins a few days ago. It was determined there that I have dragged fovea diplopia syndrome and that I might try scotch tape on my glasses.

(I sat there thinking "this is Johns Hopkins and with all the medical advances out there, scotch tape is the best you've got?")

So, I sit here with scotch tape on my glasses (GREAT look, BTW) and it helps a little, but doesn't completely eliminate the double vision, or the eye strain and constant dull headache I alway have.

If putting scotch tape to blur the image is supposed to help, couldn't putting the wrong prescription in that side of the glasses or a contact with the wrong Rx do the same thing? There are multi-focal contacts available; couldn't a contact be made with the central vision area blurred? (just thinking out loud here; there has GOT to be something better than scotch tape!))

I know cosmetics are secondary to function, but I'm still a fairly young woman and still want to look nice sometimes. Scotch tape around the house is fine, but I don't really want to wear it when I have a meeting or get dressed up for an event.

Anyways, I'm hoping I will adapt and the constant headache will go away. Has that been the experience of others? I feel like I could live with the double vision if only it didn't stress my eyes so much and cause constant headaches.

Also, curiously enough, I've found that if I tilt my glasses on my face to the right and then slightly tilt my head to the left so that my glasses are level again (though not level on my face), I can eliminate the double vision. I don't know what that might mean, but I told this to the doctor at JH,  but it seemed as though he just didn't want to hear it.

I guess I don't really have a question anymore than I just wanted to follow up here to my initial post. Any input after my reading my post is most welcome. :)
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Yes, yes, yes--wearing a contact with the wrong prescription might work well for you.  I discovered this by accident.  See my posts (above) dated 7/27/12 and 8/1/12.  Your headaches may be the result of your brain's attempts to fuse 2 dissimilar objects.

Coincidentally, I just sent the paper about correcting dragged fovea syndrome with satin tape to Ruth.  (Send me your email address if you'd like a copy.)  This paper was written by doctors at John Hopkins.  When I tried this type of correction, it made things worse for me.

I suspect that some type of correction using a toric contact lens and glasses would work for you, since you can eliminate your double vision by tilting your head.  Test results from the Aniseikonia Inspector would be needed.  (See Dr. de Wit's website.)  You would need an optometrist to request a free trial of the Aniseikonia Inspector and to consult with Dr. de Wit about the test results.  

Your best bet is to become as knowledgeable as you can about your condition and the possibilities for correcting it.  Like it or not, it's probably going to be up to you to direct your own treatment.  I'm always available to help to the extent that I can.  
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Was wondering if JH explained how they came up with the dragged fovea syndrome diagnosis.  Was it thru looking at your OCT test result ?  Did they show you your fovea on that OCT test result and exlplain why it was swollen or distorted?  
Just part of the information gathering...I believe that I also have it but wasn't formally told that.

Thank you for sharing !
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Tilting the glasses is a phenomena I also have experienced. I'm not positive, but in my case I believe some of that is due to the tilt changing the focal point (or progression point) in my progressive lenses, thus shifting the image slightly. Because of my tilt demonstration (all of this was prior to my cataract surgery) the optometrist started trying prisms. He would put in a prism, and I'd try it out, and in the office, it would help (but using a fixed lens arrangement). But once I got the new progressive lens in, the tilt problem was back. We tried several prisms, but we could never overcome it. That was what got me thinking about the progression factor.

An interesting thing is happening to me. I've been on a topical NSAID for several months for some retinal swelling post cataract surgery, and I've noticed two things. The amount of correction needed in that eye has changed. Several weeks after the cataract surgery, I had a refraction done, and the results were that +1x diopter was needed for correction in the eye. I never got the glasses, as I was waiting on the ERM surgery which has gotten postponed several times. I finally decided I need something to equalize the eyes and do close work, so I got retested about a month ago. My Rx in that eye now requires a +2 correction. Once I got my glasses last week, I immediately improved my acuity in the ERM eye to about 20/25. The most amazing thing I;m also seeing, is that a lot of the gross distortion from the ERM has obviously changed. Not to say it's gone, but it's almost livable now, compared to what it was about 6 months ago. The reverse italics are still there, and some obvious size distortion, but the funhouse effect has greatly diminished.

The only thing I can attribute both the acuity change and the ERM distortion thing to is the NSAID reducing the retinal swelling. I have a call into the physicians office now to run it by him.

Perhaps the swelling existed before the cataract surgery, and it through off the measurements they used in calculating the IOL power. I was worried they had put in an incorrect IOL, but as it's changing, now I don't know what to think.
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Prisms don't work in most cases of retinally-induced distortion because the degree of distortion is not uniform across the visual field.  An ERM usually pulls the photoreceptors inward toward the fovea, so the degree of distortion is most severe in the foveal area and less severe at the macular periphery.  Peripheral vision is unaffected.  (Dr. de Wit explains this much better than I have in his paper, "Retinally Induced Aniseikonia", which can be downloaded from his website.)  On the other hand, the correction induced by prisms is uniform across the visual field.  Therefore, prism that aligns the images of each eye at the fovea will induce misalignment at the periphery.

Retinal inflammation adversely affects acuity.  It can sometimes produce a smaller image size in the affected eye.

Luvtoski, the dragged fovea syndrome paper answers the questions you raised.  I'd be happy to send it to you if you give me your email address in a private message.

I felt very much alone when I was struggling to find a way to correct my double vision.  The local eye care providers all told me that my condition was "untreatable."  I wish there was a place where we could share information about what worked for us.
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I'm now thinking the doctor at Johns Hopkins was wrong.

I simulated the "lights on-off" test he used to diagnose the dragged fovea syndrome as the cause of my double vision. Albeit not "scientific", I think it still it points to me NOT having a dragged fovea.

Last night, I got a white letter on a black background on my smartphone. I wrapped the rest of the phone in electrical tape to block out any other light coming from it. I went into a pitch dark room and put the phone up on a shelf and stepped about 6-7 feet back.

I saw one letter, as I did at Johns Hopkins. BUT, after looking at it for more than 5 seconds, the letter went double and the second image floated up and to the right.

I also had a black letter on a white piece of paper. With the lights on, I still saw double, but it actually wasn't as bad as when the lights were off and I was looking at the white letter. The second image stayed closer to the actual image and didn't float away.

When I was at Johns Hopkins, the doctor asked me how many letters I saw as soon as the lights were out and then flipped the lights back on right after I answered. I don't think he gave me enough time. It takes between 5 and 10 seconds for the image to go double.

This, in addition to being able to eliminate the double vision when I tilt my glasses (which induces prism) makes me think the doctor at JH is wrong. So, looks like a second opinion is in order for me. I just have to figure out where.

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You could get the same effect of tilting your glasses by wearing a toric contact lens.  You would need to wear a glasses lens over the contact to maintain your best acuity.  I think that this type of correction might resolve your problems in a manner that would be cosmetically acceptable to you.  Your glasses could be single vision or progressive, and they would look like regular glasses.

You would need to find a cooperative optometrist to work with you.  I believe that the optometrist could get a free trial of Dr. de Wit's Aniseikonia Inspector software.  S/he would need to consult with Dr. de Wit (by email) in order to translate your test results into a prescription for the contact lens and glasses.  Any consultation fees would be worth the money.  (Your optometrist could probably publish the results in a professional journal.)
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I've thought about your situations, and you might not even need the Aniseikonia Inspector if your double vision disappears when you tilt your glasses.  Here's something you can try:  Have your optometrist prescribe a contact lens that gives you the same degree of rotation you'd get by tilting your glasses.  Does this help?  The Aniseikonia Inspector test results could be used to further refine the correction my adjusting the image size in that eye.  The goal would be to get the images in each eye sufficiently similar so that your brain can fuse them.  
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They did the "lights on-off" test. A white letter was put on a black screen and the lights were turned off. I saw one letter. The lights were then turned on that the letter was changed to black on a white background. Then, I saw double.

Though, I'm now thinking the test was done too quickly and I was not given enough time. In simulating the test on my own at home, I've found that it takes at least 5 seconds for the image to go double, sometimes as long as 20 seconds. (I've done it several times) When it does, the letter floats up and to the right.

In the dark, I seem to have fusion initially and then the image doubles, even worse than in the light. In the light, the image is double immediately but the double image stays constant and doesn't float further from the actual image.

Jodie, thanks for the suggestions.
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Hi Jodie I thought I would just give u an update I picked up my new driving glasses on Thursday from Ken Robertson they work really well I'm so pleased he had to put in corrections as I had vertical as well as horizontal aniseikonia.i'mjust waiting for  the new lens for my reading glasses .it such a relief to be able to see properly without the heavy baroque lens I had put in myself . I'd like to thank you for all your support and suggestions .
                                                                          Many thanks Ruth 1246
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I'm the original poster. I couldn't get my login to work.

I'm at my wits end. I saw two more specialists, both HIGHLY respected. The retina specialist didn't see any evidence of a dragged fovea, which is good. But the strabismus specialist said there's nothing that can be done for me. My eyes just don't want to work together.

The double vision itself isn't so terrible. I can function with it. However, my eyes are so strained that I'm in pain all the time. I can't take it anymore. Nobody seems to know how to relieve the eye strain. Patching the bad eye doesn't work. My good eye is also strained from picking up the slack. It hurts to see. It hurts when I wake up in the morning and gets worse all day. Nobody can help me. Why can't anyone help me!?!??!!!!

I have 3 bottles of various meds on my nightstand and the only thing that's keeping me from swallowing all of them right now are my boys. But I don't know how much longer I can live like this. All my boys see is a mom who's almost non-functional, in pain all the time. This pain has changed me.

Please don't tell me to seek counseling. I'm in counseling. It isn't fixing my eyes. I just don't know what to do anymore. I can't live like this.
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Heartfelt response here.  I just read this thread and it breaks my heart that you are in such pain.  There must be something that can be done for you.  I have had PVD in both eyes, retinal tear, and now ERM, although that is causing me no problem.  This board has been a source of information, education, and encouragement for me.  With all my heart, I wish I could help you, and I implore someone who might have the knowledge & ability to get in touch with you and offer a solution to this problem.

Having said this, I am going to pray for you daily.  I am going to continue to do this long after this thread has moved along, and if you ever feel alone, rest assured you are not. There was a time I was in great despair with my life and I was rescued from it by the grace of God.  May He lead you to the right person that can help you with this problem.  Please hang in there.  Agree with me in prayer that God will lead you to the right person who can help.  
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I just read your post and truly feel for you.  Meljoanne couldn't have said what I feel any better.  Please hang in there.  When I had my ERM removed 2 years ago, I was 20/200 before the ERM surgery in that eye, and then one month post surgery went to 20/400...supposedly because of a developed cataract from the surgery.  I didn't believe it, didn't trust the doctor anymore, and was mad at the world.
I had a friend that recently died of breast cancer at 52 and I remember her saying "nobody wants to come to a pity party" and after that I started changing my attitude.  My eyes were not working well together either but I did not have the pain you are talking about.
Enough about me.  You deserve to be mad, frustrated, sad and every emotion you are feeling.  I felt it too, and so alone...like the world was going on and didn't care about my problem.

Please just hang in there and give it time.  Continue to reach out on these forums and keep trying other Retina Specialists...I went to 4 Retina Specialists and 6 Cataract specialists and learned something different and valuable from each one.  It's like a puzzle you have to put together yourself because it seems no one doctor has the time to really delve into each case like we want them to.

I hope I have said something helpful, but I too am praying that someone with real knowledge will add something of value here.
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This is my first post ever on Medhelp.  Although I have wanted to join the site for a long time to post my ERM story and to give thanks to many who have been giving me insights and advice, I have delayed in doing so thinking I could wait longer to report more results after my surgery.  However, Tic, you have prompted me to join immediately in order to send you my blessings.  I wish you could try to free up your mind and to try focus on things which are not taxing to your eyes while the recovery process takes its course.  Please don't give up trying.  You have many friends on this site who will cheer along with you and will give you support in your search for a solution.  Please be patient and hang in there.  All the best.
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Hi Jodie
              Just thought I would update you I now have both my reading and driving glasses with isokonic lenses  in both and I must say they work fairly well .the driving ones work better than the reading ones but I guess that's understandable as reading and writing is a more detailed activity than driving. I have to go back and see him in two years for an eye test .
I'd like to thank you for all your advice and information it was just what I needed at that time as I didn't know just what was happening when I first got the double vision. If you should come across anyone from New Zealand with Ainisekonia I would be more an happy to give them any information and help.
Once again thank you so much . Regards Ruth 1246
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Glad that you've been able to find a solution.  For prolonged reading, you could see whether blurring or batching your bad eye would work better than the glasses.  
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Hi Jodie I'm  not complaining and the reading glasses are ok just get the odd time when things go wonky and double .i do realize that I have been really lucky esp when I read others stories  take care many thanks Ruth
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Jodie, I've certainly learned a great deal from reading your posts in this column. I was diagnosed two years ago with ERM in my right eye, and a year later with the same in the left eye. My doctor did not recommend the surgery since my vision is still 20/25 with corrective lenses, but I have marked aniseikonia. Print and images are much larger through the left eye and the distortion describes the top half of a circle. Images in the right eye are very small and the distortion describes the bottom half of a circle. Fortunately, with my reading glasses, the image that reaches my brain using both eyes is nearly straight--just somewhat blurry--but I can't process the images from the two eyes with my distance glasses and I get terrible headaches. Now my doctor is recommending surgery, but only on the left eye; suddenly she thinks the right eye is too far gone, but I'm afraid I'm lose the balancing my eyes are doing now with reading and I think I'll still have double vision since the right eye will not be corrected. Do you think the surgery will help or hurt in the long run? Ruthie T
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