FAQ: "When is strabismus surgery necessary? What should I be vigilant about before going through with it?" - A guide based upon what I would have wanted to know before undergoing eye muscle surgery

NOTICE: Because communication and collaboration between ophthalmologists/strabologists and developmental optometrists is generally poor, it's hard to know whether one is getting the appropriate information or advice. Having suffered from strabismus for twenty years during which I have undergone three strabismus surgeries and more recently three years of Vision Therapy, I feel like my ideas might be useful to many who are struggling to make the right decision.  I am not an optometrist or vision care professional but under the force of circumstances I have become well-read on the subject. Moreover, during this time, I have had lots of contact with other adult patients and parents of cross-eyed children.  This blog entry is not clear cut advice, but it definitely contains elements to consider before undergoing eye muscle surgery and I hope it will lead to more informed decisions and a better life for everyone involved.

I'm not an anti-surgery zealot but it is safe to say that nowadays it is widely overused as a treatment for strabismus, often not in the patient's interest. Even though often called a 'routine procedure' by surgeons, strabismus surgery is a serious life changing event. In order for the outcome to be beneficial, a cost-benefit analysis has to be made based on ALL available information. The effects of surgery are not easily undone so you want them to be positive. First of all you should be aware of all strabismus treatment options, which is often the first major stumbling block in dealing with the vision care sector. SURGERY IS NOT THE ONLY OPTION.

But once knowing the various options, who to believe? What to decide? I will try to be as objective as possible and give you my view on several strabismus situations one might encounter.

INTERMITTANT STRABISMUS/ PHORIAS
NEVER get surgery if your eyes are aligned some of the time but alignment can not be sustained during visually taxing tasks like reading. Nothing good will come of it. Take your healthy eyes and eye muscles and improve your vision and eye teaming skills through visual training until you are able to maintain eye alignment 100% of the time, also while reading. This can often be achieved in less than one year.

MANIFEST STRABISMUS/TROPIAS
INFANT:  In case of strabismus, it is often said that 'the sooner the surgery, the better'. This makes sense because in that case the baby will adapt more easily to the new artificially manufactured eye posture. But on the other hand, given the fact that an infant can adapt so easily it might be worth considering to avoid the surgery all together and opt for strengthening the visual system through stimulation. Infants are very malleable and have tremendous rebound capacity even when born cross-eyed. I would like to refer you to an earlier blog entry on this topic titled 'I have a cross-eyed infant/child, what the hell am I supposed to do?'. Stimulation can include visual training and life style changes, Syntonics and physical therapy to aid with sensory motor development.

That being said I understand it sometimes feels 'impossible' to parents, especially when their child was born cross-eyed. It's like it was always been this way and all around they get told it's not possible to change the situation. As I see it, those children are born into a more difficult 'visual position' and it might be more challenging but they have the potential to develop normal vision like everyone else. The prevailing negativity among many vision care professionals often doesn't help in moving towards that goal. Because other options are not offered or insufficiently tried (patching by itself is not a worthy equivalent to proper Vision Therapy), parents often feel like they have to act NOW and agree to surgery.

In theory, it sounds good. The child is still young and then at least cosmetically the issue is off the table. However, strabismus is NOT a cosmetic issue, it's a functional issue. So if you agree to surgery, keep in mind you will have to stimulate the child's brain and teach him to use both eyes together. Surgery should always come with recommended follow-up Vision Therapy. After rearranging the mechanics, you need to provide the little brain with 'driving instructions'. Vision develops throughout childhood and its development has to be monitored carefully, especially in children starting out in a visually precarious situation. Vision development is an ongoing process which often does not easily lend itself to 'quick fix solutions'.

Without these 'driving instructions' the eyes will often revert back to crossing leading to follow-up surgeries. Now, the thing that strabismus has going for it is usually the fact that in essence the eyes are healthy and the brain 'just' needs to learn how to control and use them. So the last thing you want to do is to actually damage the eyes or its surrounding muscles by cutting them up and reattaching them one or several times. So if you were to opt for surgery, and this piece of advice is based on my own personal experience,  I strongly urge you to look for the best surgeon around. Do your due diligence. As in any profession, not all surgeons are created equal. Strabismus surgery is no small matter. Check it out on Youtube if you don't believe me. You don't go in there and come out the next day 'That was fun! What's next!? Otra cosa mariposa!'. A good surgeon will minimize damage and scar tissue while optimizing eye motility and posture which will allow the child to develop his vision further as optimally as possible. If dealing with an honest and knowledgeable surgeon he might admit that in many cases the best way to do that is not to perform surgery at all.

This brings me to another important point. Do not act on the opinion of one eye doctor or surgeon alone. Make sure to get the opinion of someone qualified in visual neurorehabilitation or vision therapy too. Sometimes these people are hard to find but it's well worth it.

CHILDREN: For somewhat older children the same cost benefit analysis applies, with the difference that the child can to some extend choose or be compelled to cooperate in his own rehabilitation. Given the fact they are more or less consciously aware of what is happening I would rather try VT over surgery. Surgery often has a shock and awe effect by basically creating a dis-accord between the way the brain had developed so far and the new eye posture which is hard to predict. Surgery comes with certain risks and afterwards Vision Therapy will most likely still be necessary. Everyone reacts to surgery differently but you want to keep in mind visual rehabilitation is harder if the muscles have been cut up and reattached.  Children still have very plastic brains and a surprisingly resilient body so you want to take advantage of that and thoroughly try Vision Therapy before resorting to surgery. In the long run, the functional benefits of good binocular vision are invaluable.

TEENAGERS are often more self-aware and motivated to straighten their eyes. If I would have been told of the option of VT when I was a teenager I would have grabbed it with both hands and would never have let go. Another important thing to mention is that vision development should get precedence over school work regardless of age. If there are just not enough hours in a day or it's too stressful, you take care of the vision issue first. Vision is a prerequisite for good school performance so you want to start with that. First things first.

I had my surgeries at the ages of 16, 18 and 19. The third one was to make up for the second one and after that I was STILL not properly informed about all my options. These are delicate ages to get into the surgery adventure without knowing about visual rehabilitation and I was getting very, very desperate. I hope you read this before that happens. My esotropic brain underwent severe shock and awe after being forced to deal with an exotropic-ish eye posture with serious eye motility restrictions. I could not even maintain a stable gaze anymore and experienced constant double vision. My functionality suffered tremendously and I had to 'relearn' a lot of things. The consequences of those interventions are felt to this day. This is why I feel very strongly about informing patients of their options.

So ADULTS, when do you decide to go for surgery?
With the help of prism glasses surgery outcomes can be more or less simulated in advance (same goes for children and teenagers by the way). 

1. If with the help of prisms you can achieve binocular sensory fusion in the brain, your problem is to a great extent of a mechanical nature. Two options come to mind.
- Get an appropriate pair of prism glasses which stabilize your gaze and allows for sensory fusion on a cortical level. The prism glasses function like crutches to artificially compensate for poor eye alignment. While using this kind of help, it is advisable to engage in visual rehabilitation and gradually decrease your need for these 'crutches'. It will take a while but if the prism glasses are fairly comfortable this allows for a gradual transition without 'shock and awe'.
- Try to fix the mechanical eye muscle problem by means of surgical intervention. If you achieved good sensory fusion with the prisms, a mechanical change through surgery might just fix the problem. In theory this sounds good and it can work. Much depends on the surgeon and on how well the surgery went. Have you not only have achieved eye alignment but is eye muscle damage minimized and eye motility optimized? You don't want an 'aligned' eye just pointing forward unable to move appropriately and function in accordance with the other eye. Depending on the patient, this might lead to very annoying double vision. That being said, I personally know someone who experienced fusion through prisms, underwent eye muscle surgery by a very good strabologist and came out with full blown stereo vision. I have heard similar stories over the years with the appropriate amount of jealousy. ;) This is to say the 'shock and awe' effect is not always negative but you need a really good surgeon and in my opinion it's much more of a gamble than the prism + VT approach. Vision training might still be advisable after surgery. I have not gone into the financial costs of either option but if you do your research you will find that surgery is not only riskier but also more expensive.

2. Adults with stong suppression of one eye who don't achieve immediate sensory fusion with prisms.
In this case the problem is not 'merely mechanical' and eye muscle surgery without Vision Therapy afterwards won't really improve your vision. So let's look at the options.
- You could, depending on your priorities, want to get cosmetic alignment at all costs without regard for functional vision and undergo surgery thinking that then at least you have already fixed the mechanical and cosmetic side of things. Problems with this approach might be that this is unlikely to stick if not structurally accommodated by the brain through vision therapy. Again, the risk of irreversible eye muscle damage should be considered along with other risks such as post-op double vision. You always want to remember that the problem is not really situated at the eye level but at the brain level so surgery will not solve the brain problem and might actually damage the eye muscles which weren't really the problem in the first place.
- You could go down a less intrusive road of Vision Therapy focusing on gradually teaching your brain to point your eyes correctly and then gradually break through suppression in order to achieve sensory fusion and stereo vision. This is probably the less expensive and less risky road of the two, EVEN if not covered by health insurance. Outcomes will likely be better and more durable.

3. Adults whose suppression has been broken, experience double vision daily and don't achieve sensory fusion but rather superimposed images through prisms.
This is a red flag and a behavioral/developmental optometrist should be consulted asap. Double vision has serious implications for quality of life and should be treated by neuro-rehabilitative methods without additional damage to the eyes or eye muscles. If no comfortable situation can be achieved with prisms, surgery will not be beneficial. In this case surgery is only a 'good idea' to make up for previous surgery debacles which should not have happened to begin with. So step away from the surgeon!

In this case the seriousness of the situation should be understood and every action should be aimed at improving rather than deteriorating this brain injury. Visual rehabilitation should take priority because otherwise the downward spiral will not be sustainable over the long haul. Vision Therapy programs should be aimed at resolving double vision through eye alignment, eventually leading to sensory fusion. Vision therapy will be less difficult, but not easy, without recent surgical trauma.

CONCLUSION
It would be unreasonable to completely discard the uses of eye muscle surgery since every case is different and requires a different treatment strategy. Nonetheless, surgery should be a measure of last resort. Many other more structural, less risky approaches should be tried first: Vision Therapy, Syntonics, ... A good indication of how binocular vision problems (strabismus) and amblyopia (lazy eye) are brain problems, and generally not eye muscle problems, are recent studies using tDCS (transcranial Direct Current Stimulation) to promote fusion in the visual cortex in conjunction to vision therapy. It seems like a very promising method aimed at dealing with the real cortical problem rather than the cosmetic surface. It is also less invasive and risky than surgery, however crazy that may sound. More on this later.

So to sum up, I'm not saying 'don't get surgery under any circumstances'. I am just asking you to carefully weigh pros and cons and to not blindly follow one doctor or be pressured into surgery. Strabismus treatment or the pursuit of good functional binocular vision is more than just a medical issue. It's also an educational, academic and work performance related issue. This makes it a socio-economic and ultimately democratic issue. Do we really want to provide good functional vision care and thus provide people with equal opportunities?  Or do we just want to pretend to care and provide half measures leading nowhere but more medical bills and repeat cosmetic surgeries?

LAST WORD
"If you make something a little bit better, people might pay you for it; they may not. But if you make the world (or people's lives) a radically better place, the money is going to come find you, in a fair and elegant way." - Astro Teller

The content of this blog is based on twenty years of unpleasant experience and much hard work to undo past mistakes. If this and other blog entries helped you to avoid making similar mistakes and you can afford it, show some love by donating a few bucks. Thank you! 

Why do I have trouble reading?

"If you struggle with keeping both eyes at the same point on the page, you may be able to read fine if asked to read a single sentence or paragraph but not if asked to read for many minutes. We have no trouble recognizing that a child with a mild limp may be able to walk from one end of the classroom to the other with little difficulty, but we would not expect that same child to be able to run a mile on the school playground as well as a child with a normal gait. Why then don't we recognize the impact that eye coordination can have on an endurance activity such as reading?"

Allow me to refer you to the complete article written by Susan Barry:http://www.psychologytoday.com/blog/eyes-the-brain/201203/why-do-i-have-trouble-reading

una publicación de Wow Vision Therapy.

It's like solving a cross word puzzle while being eaten by a tiger

In previous generations, when survival depended on the ability to hunt, fish, and farm, the visual system had to respond to constantly changing, distant stimuli. Good distance visual acuity and stereoscopic vision were of paramount importance. Today, the emphasis has shifted from distance to two-dimensional near vision tasks such as reading, desk work, and computer viewing. In some persons, the visual system is incapable of performing these types of activities efficiently either because these tasks lack the stereoscopic cues required for accurate vergence responses or because the tasks require accommodative and vergence functioning that is accurate and sustained without fatigue. When persons who lack appropriate vergence or accommodative abilities try to accomplish near vision tasks, they may develop ocular discomfort or become fatigued, further reducing visual performance.

Accommodative and vergence dysfunctions are diverse visual anomalies. Any of these dysfunctions can interfere with a child's school performance, prevent an athlete from performing at his or her highest level of ability, or impair one's ability to function efficiently at work. Those persons who perform considerable amounts of close work or reading, or who use computers extensively, are more prone to develop signs and symptoms related to accommodative or vergence dysfunction.

Symptoms commonly associated with accommodative and vergence anomalies include blurred vision, headache, ocular discomfort, ocular or systemic fatigue, diplopia, motion sickness, and loss of concentration during a task performance. The prevalence of accommodative and vergence disorders, combined with their impact on everyday activities, makes this a significant area of concern.

This is the introduction of the guidelines for the treatment of vergence and accommodative disorders by the American Optometric Association. More about this text in later a later post!

The relationship between strabismus and sports

I just went running. Strength is returning and I'm more relaxed. Communicating sources, I suppose. The experience I wanted to share is the following... After running for a while and especially the brief period after running lasting a few minutes, my eyes point at things more correctly. This is interesting because obviously I am getting tired, but at the same time I'm directing a lot of energy towards another process that doesn't involve too much accurate eye work. As long as I don't run into a tree, we're good. My intuitive explanation would be that most energy and brain activity is used for running and not for seeing, so it functions more based on ' basic instinct'. So vision really is a learned habit, and does not happen all by itself. It's an activity that a lot of people take for granted. I already knew that, but now I felt it. Once I rested for a few minutes after running, my eyes felt less flexible again and my brain started abusing my eyes again according to my deeply rooted strabismic habits... :) Yeah, call me crazy.

I want to elaborate a little bit more on sports and strabismus. Given the lack of stereovision and ensuing lack of depth perception and oversight strabismics usually aren't heroes when it comes to ball games. Although as a kid I played football every break I got and was actually pretty good at it. I actually loved playing football (the real kind, not the American kind) but I think my biggest strength when it comes to that game was my long distance speed and endurance. Aside from my recent health issues and serious fatigues, I've always been a natural runner. Running must be one of the few sports that are not strongly vision related. Cycling and swimming too, basically no contact sports. Without any special training I ran the 5K edition of the Antwerp 10Miles in 18min50' at age 14. I finished 14th of thousands. I did it again a couple of years later. I also did longer distances a few times, but 5K was my favourite. When the double vision started eating me away some years later I was slowly losing my edge, when normally speaking age-wise I should be reaching my top performance.

I'm sharing these facts to illustrate a theory I have about running and strabismus. Because of the additional physiological stress strabismus causes it actually makes your body stronger and more fit to run to some extent up to some point in time. Reading in particular and school in general is so demanding for a strabismic you have to get stronger to meet these challenges. I used to go running sometimes as a venting mechanism, to release visual tension. Looking back at it now you could call it 'unconscious self medication'. It relaxed the visual system. That only works up to some point of course... When the pressure of strabismus became too much and I was struck by double vision, it was sucking away so much energy that running was just adding to the energy deficiency. At that point the physiological stress caused by strabismus is just too much and detrimental. I remember my gym teacher telling me that it is very clear my stamina was above average and I should maybe consider doing something with it. The thing is that sport efforts also influence my vision. I tried pursuing athletics once but it was impossible for me to focus on school work with that energy consuming activity on the side. I had to choose between keeping up with mandatory school work and extracurricular sports. At the time I didn't understand why all this was happening to me, but I just couldn't keep it up so I quit. There just wasn't enough energy for all of it. It wasn't the first emotional breakdown, and it wouldn't be the last. I always prioritized my school work even after developing double vision and I shouldn't have. It took me a long time to figure out that proper vision is thé priority and that the option was even on the table.

Cry for help

In the summer of 2011 I was going to graduate. As any graduate has a 'what now' moment, mine had announced itself well in advance and it was not going to be pretty. I always knew this disastrous scenario was going to present itself and warned my family saying  'Even if I manage to graduate like this, it is not going to be okay'. But their understanding was a luxury I was not going to earn easily. One year earlier I had found out about optometry and vision therapy but after 8 months of training a solution was nowhere in sight. I wrote a long e-mail with my personal eye history to 'Fixing my gaze' author Susan Barry which I will attach to this post. Her answer was helpful, supportive and confirmed everything I had learned so far. It was going to take a lot more patience, rest, will power and lots of time.

Let’s start at the beginning… I was born on 17 December 1989. Then at the age of three I started being cross-eyed (horizontal deviation), also I was experiencing learning difficulties in nursery school. So they started doing batteries of tests to figure out ‘what is wrong with me’. Their conclusion was that I was  long-sighted and they would try to fix the strabismus applying eye patches to reactivate the lazy (left)eye. In addition they prescribed me some +3 eye glasses. My learning progress more or less caught up, even though lasting problems with out loud reading. I remained to be a slow reader but at least I would not lose my concentration as fast as before… The glasses corrected the strabismus to some extent but the ability to coordinate my eyes and having 3D vision was permanently lost. Corrective surgery was never mentioned by that doctor.

This way the situation was stable until 2006. I kept wearing my glasses, feeling there was something latently present that was bothering me but not sure what it was. In 2006 I went on my yearly ophthalmologist visit to check on my eyes. It was a new eye doctor in the same practice and he started talking to me about the possibility of corrective surgery. I was 16 at the time and I’d liked to have better eye alignment, but was not really informed about the risks involved. I agreed. The operation initially appeared to be a success: wearing my glasses the squint was barely noticeable. I was not experiencing apparent double vision. All I had to do was to wear the glasses and everything would be ‘fine’. On another note, because of increasing study loads and the slow reading issue I shifted branch of study in my high school from ‘Economics, Mathematics’ to ‘Economics, Living languages’. This has postponed upcoming problems, looking back on it.

In September 2007 I started studying Economics at the university of Leuven even though my arrears with regard to mathematics. Increased study pressure led to having to study every day quite intensively, straining my eyes for hours. This had two simultaneous effects. Firstly I started to hold my hand in front of my left eye because I had trouble focussing. Sort of starting latent double vision. This combined with stress, obviously, caused me to scratch my face with all its consequences for my skin. Secondly,  my long-sightedness was getting better by ‘training’ my eyes meaning that my glasses were getting too strong in relation to my eyes. I had a harder time trying to read black boards or just far away objects in general. So I went for less powerful glasses and tried lenses for a while. Changing the position and the angle my eyes and my brain were accustomed to. My left eye was also getting ‘reactivated’ or ‘less lazy’, according to my personal experience.  I now only had like +1 at both eyes. I started seeing my nose in combination with photophobia (sunglasses were often necessary). Both conditions made me extremely miserable.   In short, at the end of my first year of university my eye situation had changed dramatically.

 October 2008: After consulting my eye doctor, we decided that the only way out of this deadlock would be to take a chance and undergo a second strabismus operation. (Which I should not have without consulting other doctors or optometrists for that matter, but I was desperate to get out of this ‘nose vision’ situation.) I woke up in a far worse situation. I had gone from being slightly cross-eyed to being wall-eyed. I had way less power over the coordination of my eyes, making me very insecure in my movements and making it impossible to read without occluding one of my eyes. The operation even messed up the vertical alignment of my eyes which had never been deviating vertically before. The major problem is that patching one eye gave me tremendous headaches while studying. But I had no choice if I wanted to complete my year, so I carried on doing this. Studying was literally painful. I used all sorts of remedies to alleviate the pain (drinking wine while studying, putting ice on my head, paracetamol, chewing coca leaves…)  It is needless to say I reached rock bottom. I have considered ‘escaping’ several times, if you know what I mean. Me and my parents started seeing other specialists in the meanwhile. Most of them were sceptical about the possibility of improving my position by operating again. During the exams in June 2009 I started to experience more problems: I felt like my left ear was getting increasingly stuffed. I had no time to go to the doctor because of the exams, the only thing I did was apply pressure on my ears till it finally ‘popped’. Feeling liquids coming free I slept with that particular ear down, discovering the next morning blood had dripped out of it. This episode is to be continued, because my ear/ jaw still didn’t feel right.

One physician truly believed he could help me and I let him convince me. In August 2009 I got operated on my eyes for the third time. Given the circumstances, he did a good job. I still have double vision but I have more control over my eyes. So if I am looking at something holding my eyes in the same position I can keep it that way and quite effectively shut out the second image for a limited amount of time. The problem is, yet again, the reading. Because this includes a lot of left right movements which I can’t execute properly holding my eyes in the same angle making it impossible for me to shut out the second image. A big improvement is that I don’t have to patch my eyes every time I want to read something. I still have problems having a short concentration span and having to hold my hand beneath to my left eye to suppress the second pair of letters I see. But overall, have my eyes improved since before August 2009. This brings me to my ear/jaw problem. The previously mentioned full ear never really recovered to its previous state. It feels different inside, compared to the other side of my face. The specialist I saw for this told me this is caused by excessive muscle straining around my jaw, which sounds like a logical explanation. I went to a physiotherapist to relax the muscles, but this does not really help me permanently. It always comes down to the eye problem So at the beginning of this academic year (2010-2011) I discovered about vision therapy thanks to the book ‘Fixing my gaze’ by Susan Barry and some websites. I went to an optometrist in Antwerp (Berchem) named Guy Naegels. He wasn’t really hopeful about the chances of success but agreed to take me on for some training sessions. I’ve been going there since November last year and have completed 25 sessions. I’m not sure whether I’m making a lot of progress but there is definitely an evolution in my vision. I will try to describe my experience. My gaze has been somewhat steadier and individual eye tracking movements have improved over time... Although the major problem remains to be the fact that when looking right or left the angle in which my eyes are positioned changes, making the second image move in comparison to the ‘main one’. That’s why my brain can’t get used to the situation, I guess. This results in a very confusing and nerve-racking perception, especially annoying while reading. Every ten training sessions I had a check-up to record my progress. The measurements show that my angle is decreasing and I feel like I am starting to have fusion of the two images every so often.

As far as fusion is concerned, I do believe I have fusion at certain particular moments melting the two images. Using the green and red glasses in combination with the green and red transparent sheets, I can make stuff into one although I’m not completely sure I’m seeing the right thing. Half of the figure is still red and the other half is green, and I cannot sustain the view very long. My peripheral fusion seems to be better than my central fusion. Attempts to enlarge my range of fusion have been rather unsuccessful up until now. Very short distance is hard or even impossible as well as long distance, medium distance works better. It has to be said that aside from being in therapy I have been studying on a very regular basis inducing my suppression system (as far as it still functions) meaning I might have undone my efforts to achieve fusion to some extent by straining my eyes. I plan to take on a rather physical job for the year to come, giving my eyes a chance of relative rest and visual exercises. The situation you described in your book reminds me of the time I was still able to suppress the second image.  I was reasoning since I already saw the second image I just have to be able to bring them together, so I figured I was already half way. I just hope the relatively recent dates of the operations didn’t mess up the actual agility of the eye muscles. Individually my eyes can assume any position, even though the joint coordination habits seem to be hard to break. Not being able to freely live my life because of the limitations double vision brings along, is literally eating me away. It was hard enough to have my academic performance smashed to pieces, but now having to start to work I feel very constraint option wise.  I’ve been losing weight for a few months now and am losing hope for the future. If some things are unclear or you need more specifics, I'd be more than happy to provide them. I would greatly appreciate any advice you could offer me! 

Respectfully yours,
Michael Lievens