Wednesday, December 25, 2013

Looking back at 2013 and looking forward to 2014

Entered 2013 barely able to align my eyes in resting position and ended the year with the ability to calibrate eye alignment while moving with increasing accuracy. Double vision has been eliminated in daily life EXCEPT when trying to read. However, also while reading I can see the images coming closer to each other than before. During 2013, I have consolidated my transition from manifest strabismus to intermittent strabismus (Convergence Insufficiency). Remaining stumbling blocks towards achieving a workable vision level are improving convergence, sensory fusion and ultimately stereo vision.

I'm starting to feel a lot safer after three years of damage control and can feel victory approaching. I have managed not to lose my mind, not to snap under the pressure and secure much needed support for my recovery. If all goes well, I can finalize this ambitious project by tackling aforementioned challenges during the upcoming year and I will, for the first time ever, experience a visual system adequate for reading, learning and just plain living. A lot of opportunities will open up themselves simply because my brain will be able to seize them. The first subtle functional benefits are starting to kick in. Slightly better reading, less motion sickness, an easier time using electronics, ... Good changes are coming!

But for now, the show must go on! All my energy, time and attention will still be aimed at molding my biology into the shape it was supposed to have if it wasn't for adverse outside interference. I have lost twenty years and I'm not looking to lose any more time than necessary. Soon I will be able to give tDCS a try in adjunction to Vision Therapy. Can't wait to report on it. From what I hear, it's a major game changer. Sounds like 2014 is gonna be the year! Happy holidays everyone!

Friday, December 13, 2013

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.

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.

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.

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?

"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! 

Sunday, December 8, 2013

Vision Therapy Loading

'Loading' is a term used in Vision Therapy meaning the unconscious application of visual skills consciously acquired during therapy while doing other activities. The idea is to not only be able to point your eyes at the same place at the same time but also be able to do it by default in daily life. In other words, integrate visual skills that so many take for granted but that strabismics have mastered only after x amount of training. Personally it took me one year and eight months just to align my eyes in a rested position and now another year and four months later I can increasingly accomplish this feat also while moving and doing things. However long it took, it's exciting. Tracking cars while walking, tracking birds, being able to sit through an evening and make saccades from face to face without having them go double or being completely exhausted afterwards and so on. This is just the beginning!

Needless to say I wasn't in great shape when I started VT because of a number of reasons I won't go into right now. At the age of 21, I was completely burned out, fighting a serious infection I still haven't gotten completely rid of, etc... So in case anyone was wondering, if not handled right strabismus has the potential to grow into a 'full blown' brain injury even though no one in your environment might realize or accept it. That's the dangerous part. Managing other people in this situation took up all my time and energy which wasn't particularly helpful. I had to rest a lot after going in the red for a very long time and ever since 'energy management' has been an important factor in my VT. I'm still not at a normal 24 year old functional level but it's getting better. Dealing with all the exterior and interior constraints, I have found a way to live my life allowing me to recover my vision which isn't evident at all. You have to be patient with people even though they are hurting you, sometimes without knowing it. Fortunately the storm died down over time. My life consists of rest, visual and physical training and productive activities like there are writing this blog. As time goes by the portion dedicated to resting is slowly declining and time to work is increasing. Later on in the process, work and visual training will start overlapping and then I will be in 'the safe zone'. Workable vision will allow me to gain more independence so I won't have to rely on other people to do the right thing.

Using these hard earned new visual skills and keeping in mind energy management, I've been able to enjoy some good vision  therapy loading activities. It has to be noted that this is written by someone with compromised suppression of his strabismic eye and suppression is even less when I move around. This is relevant because strabismics who are master-suppressors have a hard time knowing whether they are using both eyes while doing activities like these. I generally know when I am using both eyes and I'll explain you why later. If a master-suppressor teaches himself to switch off his suppression more easily, he can do these activities with red green anaglyph glasses as a control to make sure he is using both eyes. I know it might sound weird but I'm way passed shame and I have made public appearances with those anaglyph glasses. You gotta own your issues, I say!

- Running:
To better understand how running might be good vision therapy loading I want to cite one more extract from the book 'The story of the human body'.
Unlike walking, running is a jolting gait that causes your head to jerk around rapidly enough to blur your vision if unchecked. To appreciate this problem, watch a runner with a ponytail: the forces acting on the head oscillate the ponytail in a figure-eight motion with each step even as the head remains fairly still— evidence of unseen stabilizing mechanisms at work. Since humans have short necks that attach to the center of the skull base, we cannot flex and extend our necks to stabilize the head as quadrupeds do. Instead, we evolved a novel set of mechanisms to keep our gaze steady. One of these adaptations is enlarged sensory organs of balance, the semicircular canals of the inner ear. These canals function like gyroscopes, sensing how fast the head pitches, rolls, and yaws and then triggering reflexes that cause the eye and neck muscles to counter those movements (even when your eyes are closed). Since bigger semicircular canals are more sensitive, animals like dogs and rabbits whose heads encounter lots of jiggling tend to have larger semicircular canals than more sedentary animals. Fortunately, the skull preserves these canals’ dimensions, so we know that they evolved to be much larger relative to body size in H. erectus and modern humans than in apes and australopiths. One more special adaptation for damping your head’s jiggling motions is the nuchal (neck) ligament. This strange bit of anatomy, first detectable in early Homo but absent in apes and australopiths, is like a rubber band that connects the back of your head to your arms along the midline of your neck. Every time your foot hits the ground, the shoulder and arm from that side of the body fall just as your head pitches forward. By connecting the head to the arm, the nuchal ligament allows your falling arm to gently pull your head back, keeping it stable.
In short, my vision does get blurry and my gaze doesn't remain all that steady. Those reflexes aren't functioning all that well because of my abnormal visual history which includes a few teenage strabismus surgeries. However, this has increasingly been improving. First while walking and now also while running. Another test I use to check these reflexes is to simply make circular movements with my face and see whether things start jumbling around or not. The disturbing 'landslides' are making way for an increasingly stable world.

I've always been a very good runner until this strabismus brain injury became an increasingly serious problem. So a few weeks ago, I got carried away a bit and violated my usually cautious energy management ideas. Sure enough, that  infection started showing its head again and I had to ease off... Generally though, I do get that 'post-exercise high' again rather than mind crushing exhaustion so I'm on the right track.

- Basketball
With regards to the energy management issue I have found basketball an excellent VT loading activity. In my neighborhood there is a public basketball court so I go there to throw some baskets. This might come as a surprise for a strabismic but I never was particularly bad at football (soccer) or basketball. In this respect too, I'm curious to see what might happen over the next few years.

This is my favorite VT loading activity because it has all the elements you want to incorporate: unexpected movement, physical interaction with objects, reflexes and hand eye coordination. I know I am not suppressing while playing because when the ball comes to me from the side it is sometimes doubled. Extreme sideways viewing, especially on my right hand side, is still somewhat of a weak spot. I also notice it in more subtle ways which are hard to describe. Movement really takes away more of the residual suppression and after a while I do get tired so then it gets harder to single out my vision or see clearly. When that happens I just call it a day and go home. The work you do one day will pay off over the next couple of months and years if all goes well, so I go home satisfied knowing I am one day closer to normal functioning. The best thing about basketball is that it makes me realize that I move my eyes in sync unconsciously and I am starting to take 'not having double vision' for granted.

- Balance Board
Something I also do, but less frequently, is balancing on a bongo board. It took a while to get it down but now I can keep my balance. That doesn't necessarily mean it's helping my vision yet. There's so many things I can do by circumventing my bad binocular vision. It's fairly 'easy' to keep balance when keeping my head steady, so now the trick would be to execute circular head movements while standing on the board without falling and having my vision go double. That's the definition of loading, I suppose. Once you can do a combination of skills reasonably well, add one!

- This list is not finite
Any activity allowing you to incorporate good eye movements without having your vision go double or jittery while moving and without collapsing of exhaustion are good VT loading activities. It's no rocket science as long as you have some way to know you are not suppressing. That might be an issue for some strabismics. It's really fascinating how every strabismic is different, even though we 'are the same'. We are pursuing the same goals but often travel by different roads.

Aside from these activities and regular VT exercises, visual hygiene at all times is important of course. I'm enjoying tons of audio books lately. Thank god for the English language and all the great material that becomes available once you master it. Personally, I have always valued intellectual achievement over physical achievement so not being able to read well and have it gradually taken away even more over the years was devastating. But when considering this from a (visual) neuroscience point of view, the distinction between physical and intellectual achievement is thin if not nonexistent. That reminded me of something Steve Jobs, known for his frantic integration of hardware and software, once said: 'If you really care about software, you have to care about hardware.' When it comes to the human body, our hardware (body and brain) IS the software. By doing these gross motor exercises I'm working my way up to finer eye movement tasks such as reading. I often wonder how easy graduating from Uni must have been without uncontrollable double vision. Can't wait to really enter the zone.

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