Found 2 comments on HN
There are two medical conditions in dire need for an intelligent solution rather than the barbaric approaches in use today. In both of these cases we have friends and family who have had direct contact with current broken non-solutions. I'll split this into two posts so each can get it's own comment thread. Here's the other post:

Strabismus/Amblyopia (lazy eye):

The current non-solution is to section eye muscles to re-align the eyes. Yes, they pop your eyeballs out of their sockets and cut (shorten) eye muscles to pull the eyes past the point of alignment in the other direction. In other words, they over-correct a little in hopes that the eyes will end-up aligned (or close enough).

This is, for lack of a better term, barbaric stone-age bullshit. And, yes, this is being practiced at places like UCLA on a daily basis. Desperate parents take their young children there and subject them to this kind of butchery.

Why is this the case? Because young children are not treatable. If you've ever dealt with a 2 to 5 year old you know it is just about impossible to get them to run through eye exercises (or any strict routine) for one minute, much less an hour.

So, "researchers" latch onto desperate parents and offer a surgical procedure most sign-up for, with the requisite exchange of a shitload of money for the work.

Children are silent victims in this scam. The surgery is a failure more often than not. The few cases that might provide results are probably corner cases. In other words, the "doctors" get lucky. In yet other cases some cosmetic results are had, yet depth perception is never created or restored. In other words, the eyes might look more aligned yet the kid never sees in 3D.

I met several adults with Strabismus. On person had seven surgeries when she was a kid. Her parents kept taking her to the butcher because, of course, they would see temporary alignment after every sectioning and kept thinking it would eventually "take".

This is disgusting to me. Children are being victimized on a daily basis and desperate parents are being swindled.

As an engineer I see this as a control system problem. The solution, surely, isn't butchery, it has to be in understanding the control system issues and seeing if there's away to re-train or correct it.

I actually tried to have this conversation with the lead researcher at UCLA about ten years ago when someone close to us was considering having their kid butchered. To say that the researcher was a smug condescending asshole doesn't quite describe the god syndrome I experienced in that room. Of course, doctors don't know the first thing about control systems. What the hell did I expect? Right?

I actually took at shot at trying to understand the problem. I read a book titled "Models of Oculomotor Control" [1] and anything else I could get my hands on. I then developed a crude biofeedback device and we tried it on her, then four year old, kid. This is when I understood just how difficult the job of having a young kid go through therapy could be. It was very hard to get him to focus on anything. And this is precisely why butchery wins out when it gives desperate parents hope.

I thought the technology had merit. I thought I saw brief glimpses of the brain saying "hey, wait a minute, what if I do this...". Yet, this effort could not be continued as his Mom was desperate to fix it and opted to go for surgery.

The kid had over-alignment due to muscle sectioning for a couple of months and the eyes diverged to their prior state within a few more months. Now, over ten years later, you wouldn't know this kid was ever tortured through such a surgical procedure. His strabismus is no different than it was prior to surgery.

It would be good to see real research on this front that focuses on oculomotor control, biofeedback, control system training and ways to encourage the development of depth perception in young kids afflicted by this condition. It isn't an easy problem, because the patient falls under the "herding cats" category.


robomartin · 2013-09-26 · Original thread
This is one of the reasons I read HN every day. So much to learn.

One of my kids has strabismus. He had surgery when he was seven. My wife wanted him to have surgery earlier (2 to 3). It took five years to convince me that the idea made any sense. It didn't. Not to me. As an engineer I saw this as a control problem, not a mechanical problem. Doctors (as in PhD's) at UCLA insisted that these conditions are caused by weak or strong muscled. I called bullshit (as in, to their face). I found them condescending and barbaric in their approach. Kid after kid goes through these bullshit surgeries for no good reason. Well, maybe not, it's easy money as evidenced by the pressure my wife put on me to go along.

At the time I devoted considerable time to building various contraptions to try and see if I could figure out a way to re-train my son to converge his eyes. The most elaborate of these rigs was a goggle with cameras, LCD shutters and 50% mirrors. I could use the LCD shutters to occlude each eye individually from a remote control panel or dim each eye. The 50% mirrors allowed me to use the cameras to watch his eyes and measure position.

With this device in hand I would sit him in front of the TV or Playstation and put on his favorite cartoon or game. I'd sit there and gently try to get him to either switch eyes or encourage him to use both eyes. I could dim the "good" eye to force the other eye to come over and help. Or I could simply occlude it and force a switch. I got some results but I couldn't find much out there to guide me. Nobody wanted to talk to me. As I said, the PhD butchers at UCLA were only interested in surgery. I studied books [0] and articles on the subject and all I got was condescension and a refusal to even approach a discussion. I worked with advanced hardware and software technologies during my day job but somehow was not worthy of their attention. Talk about feeling small.

I finally reached a painful conclusion: The problem with these conditions is that small children (2 to 5+) are incredibly difficult to work with. The concept of having such a small child spend an hour doing very difficult eye work is, well, utopia at best. Therefore, they become victims of a research community that doesn't seem interested in addressing the real problem and, instead, clings to a good sales tool "tight muscles" or "weak muscles" and cuts away.

Through this thread I learned a number of interesting things and now am hopeful to return to some of my ideas, perhaps with a different twist. I also learned of Stereo Sue ( Crap, I cried while watching her TedX video. Few things can touch someone more than something that can potentially change your kid's life. Wow.


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