Double vision after macular pucker vitrectomy

[tictactoe68]

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.

[Greenbaypat]

Hi Jodie, I have read a few of your posts on macular pucker and vitrectomy surgery, and wondered how you have progressed through this process as it appears you have had similar situations with your eyes, as I am having.  I have been told that my left eye has scar tissue and it is time for surgery again by my retinal surgeon.  My left eye had an RD in 2013 and cataract surgery in 2014. 2015 YAG.  Now I am scheduled for vitrectomy surgery on this same eye soon and am curious if you have had experience with  this type of series of events?  In the other eye, I have had all but not the YAG yet, though they say I will as soon as the other eye settles down.  If there are other current posts I haven't yet been able to find them, specifically, but if you and or others reading this are able to reply or link me to info I would be most appreciative!  I am just hoping to understand this all better and hopefully bring an end to additional or unneeded surgeries, if that is possible.  
It seems this is all happening so fast.

Thank you

Pat

[choirmom]

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

[Ruth1246]

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

[JodieJ]

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.  

[Ruth1246]

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

[PatyL]

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.

[Luvtoski]

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.

[Meljoanne]

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.  

[tictactoe1068]

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.

[Ruth1246]

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

[tictactoe68]

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.

[JodieJ]

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.  

[JodieJ]

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.)

[tictactoe68]

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.

[JodieJ]

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.

[TrapperV]

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.

[Luvtoski]

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 !

[JodieJ]

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.  

[tictactoe68]

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. :)

[TrapperV]

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.

[Luvtoski]

Please keep us posted Ruth...we are all on the journey to educate ourselves and your research will be helpful to us !

[Ruth1246]

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

[JodieJ]

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.

[Ruth1246]

Hi I tried to send a private email  with my email address but I don't think it went . Ruth solly