I recently posted about using a mirror to cure anesthesia dolorosa, a painful skin condition similar to phantom limb pain, whichi is always caused by surgery. Beth Taylor-Schott, the inventor of the technique, told me what’s happened since she last blogged about it:

Since then, David is still pretty much pain free and off Neurontin. Just a twinge now and then that he takes care of with Lidocaine, if anything. Have not had to re-do the therapy or anything like that.

I have been contacted by two researchers in the UK, and as I understand it, they’re doing research based on the blog, though I have not heard what there results are. Also, someone in Australia wanted to fly us out to do a demonstration and be at a conference, but I couldn’t get enough time off work to make it worth it.

I have heard from people who have read the blog and who want to do the therapy and who have questions, which I always answer, but only a very few of them ever come back to tell me that it’s worked, and no one has ever come back to say it hasn’t, so I’m not sure what to do with that. I don’t really see this as my crusade. I put the blog out there, and I figure the people who are meant to find it will find it. We ourselves only discovered this through a weird series of coincidences, after all.

She explained what she meant by “weird series of coincidences”:

It was by no means certain that I would read it. I think it had been sitting in my in-box for three or four months when I went back and read it. That is one coincidence. Another is that I came across it because, given that David had just flatlined twice in the hospital, I was in no shape to do anything BUT clean out my inbox, not something I did at all frequently at the time (like MAYBE once a year or every two years). And then too, I read it at a moment when his cardiologist had just told us that probably David needed to not only go off the stimulants he’d been taking to counteract the Neurontin, but also the Neurontin itself. His pain was being kept under control in the hospital with injections of Toradol, and there was no way they would let me give him that much when he was at home and not being monitored. So what would we have done if the mirror therapy hadn’t worked? He would not only have been non-functional, but in constant, excruciating pain. And yet I did not go into the inbox looking for answers, I went into it to distract myself from the fact that I seemingly had no answers. So the whole thing had a very deus ex machina quality to it.

And then there’s the fact that I happen to be the kind of person who is resilient enough to actually try something like this despite years of frustration with the condition and our treatment at the hands of the experts. What are the chances that I’d be in a situation like this, especially given the rarity of David’s condition? (Last I heard, M, the woman in the piece by Gawande, did not pursue the therapy, even after it was suggested to her.)

In a list of things that made the discovery less likely (e.g., rarely cleans out her inbox) she includes something that made the discovery much more likely, namely “what would we have done if the mirror therapy hadn’t worked?” She and her husband were incredibly motivated to make it work. More motivated than professional scientists ever are. This is an enormous advantage of personal science over professional science: the much greater motivation of the personal scientist.

Anesthesia Dolorosa is a very rare condition in which part of the skin that is numb feels pain. It is a side effect of surgery for trigeminal neuralgia. “No effective medical therapy has yet been found,” says the Wikipedia entry. Whoever wrote that meant that no entirely effective therapy has been found. Some surgical treatments are helpful some of the time.

In a series of blog posts, an art historian named Beth Taylor-Schott wrote about using a mirror to eliminate her husband’s Anesthesia Dolorosa, which was on his face. She got the idea from a New Yorker article by Atul Gawande about V.S. Ramachandra’s use of mirror therapy to treat phantom limb pain. I mentioned this years ago but it is worth mentioning again as an example of non-medical-professionals finding a solution to a medical problem much better than anything professionals came up with.

Here’s a brief description of what happened:

My brother-in-law sent me an article by Atul Gawande from the June 30th [2008] issue of the New Yorker. Using the information from the article, we came up with a non-reversed mirror therapy to try to reduce David’s AD-related pain. . . . We started doing the therapy on the 23rd of July, 2008. Within 2-3 days, his pain was down to zero, and as long as we continued to do the mirror therapy 3-4 times a day, it remained that low. This was the lowest it had been since he had had the sympathetic nerve blocks, and it stayed low for much longer periods of time than it had after the blocks.

Once the pain was stabilized at 0, we started to reduce his Neurontin, first by 400 mgs each time, then once we got to 1200 mg, by 200 mg at a time. Typically, we reduced it every 3-4 days. The first or second day after the Neurontin was reduced, the pain would typically start to go up somewhat, although it rarely went above a 5, and that was under extreme circumstances. But if we kept doing the mirror therapy, it would go back down and remain at zero, so that we could reduce the Neurontin again, and so on.

Today is the 27th of August. David’s pain has been under control all day. Tonight, for the first time, he did not take any Neurontin when he went to sleep. As of tomorrow morning, it will have been 36 hours since he has had any Neurontin. . . .

[Details of the treatment] David can look either into the mirror in his hand, or into the reflection of that mirror in the mirror on the wall, and in both of them he sees a non-reversed image of himself (unlike a regular mirror image, in which the image is reversed.) The therapy depends upon the brain not realizing that the images it sees are non-reversed images, but assuming that they are regular, reversed mirror images. . . . standing behind the chair, I would reach around and touch/massage the right side of David’s face for the length of the session while he watched in the non-reversed mirrors. Yes, you read that correctly. The affected side is the left, but I would massage the right side, the one that still has feeling. Since David’s brain thought it was looking into a mirror, it saw me massaging the left side of the face and so actually experienced sensation in that left side when I was actually touching the right side. In this way, it contradicted the brain’s theory that since it was not getting any signals from the nerves, something must be terribly wrong, so that it needed to invent pain signals to alert David to its state.

That ordinary people can do so much better than experts on an enormously important problem (if you have AD) is either wonderful or depressing if you believe, as I do, that this will turn out to be common. I have written to Taylor-Schott to ask what has happened since then.

Why does personal science matter? One reason, as I’ve said many times, is that personal scientists (who do science to help themselves) are free to speak the truth. Sometimes professional scientists (for whom science is a job) are not.

The history of human chromosome number is a good example. Starting in the 1920s, humans were said to have 48 chromosomes. In fact, the correct number is 46. From the soon-to-be-published book The Truth in Small Doses by Clifton Leaf (copy sent me by publisher), which is about cancer research, I learned that in 1955 two Swedish scientists, Tjio and Levan, established the correct number. After their article appeared,

Several researchers wrote [them] to confess that they, too, had spied only forty-six chromosomes but had thrown out the results because they were in conflict with established knowledge.

“In conflict with established knowledge” was euphemism for we were worried what would happen to us.

The Truth in Small Doses begins with this story. Leaf’s point is that cancer researchers have a similar problem: They too cannot tell the truth, which is that progress against cancer has been poor, in spite of billions of dollars spent on research.

Govind M., the Stanford student who wrote me about walking while studying, has written again to say that brown noise (deeper than white noise) makes him “calm and focused”. He discovered this while trying to find something to listen to while doing schoolwork:

I tried listening to rain, and that was ok. I know some people try to find places that are really, really quiet and then work there. But that’s pretty hard to do. Plus, it seems that the more silent the place, the more distracting individual noises potentially are. So one day I tried brown noise, because it was on the same site as the rain, and I was a fan immediately. I tried white and pink but I found them less calming and a bit too static-y. I use brown noise when I really need to focus. So any “serious” reading, writing, coding, studying, etc. I don’t know if there are contexts in which brown noise doesn’t help, but it does seem a bit much for responding to emails. . . . [It] makes the outside world melt away.

It also helps him fall asleep. He uses headphones to listen to it. Unfortunately, he said, “everyone that I have told about this thinks I am crazy.”

I tried it and quickly became a fan. Brown noise is much more pleasant than white noise. I especially like the Getting Wet preset on this page, which is close to brown noise. It does help me focus. Putting on my noise-cancelling headphones and listening to this is like being instantly transported to a faraway peaceful place. A cabin in the woods. I use it when I am doing something that takes full attention. Unlike podcasts or books, it doesn’t interfere with writing. Unlike music, it never becomes boring. (The same piece of music over and over gets boring.) Why isn’t something like brown noise piped into waiting rooms, waiting areas, and elevators?

How much did percentile feedback help Nick Winter? In 2011, he wanted to finish coding a mobile app for Skritter. This graph shows his daily work on that app. Each point is a different day. The lines are loess fits.

At first, he tried to work on the app but did not make it a priority. Then he made it a priority compared to other things he did. Then he set an explicit goal (a certain number of hours of work each day) and used Beeminder to help reach that goal.

Finally he tried percentile feedback. It helped a lot. His work per day increased about 60% (to 8.6 hours/day) compared to the previous phase (5.5 hours/day). Using percentile feedback, he finished the app. During the launch, he worked on the app much less.

The data has several interesting features. One is the sudden improvement when percentile feedback started. The same thing happened to me. Another is that it helped him even though he was already making steady progress. A third is that the sudden improvement happened after he had been working on the task a long time (more than six months). Things become easier to do the more we do them but surely this change was complete by the time he started percentile feedback. Apparently it engaged a different source of motivation. Finally, he tried several things before he tried percentile feedback, implying that its value wasn’t obvious. It wasn’t obvious to me, either. I originally tried it to see what would happen. I didn’t have a strong belief it would work.

Above all, this graph shows it’s possible to learn from long-term self-measurement and what you learn may not be obvious. People who know little about research sometimes say that randomized double-blind trials are the only convincing way to learn something.