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.