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The Big Picture

At about this time, my brother-in-law sent me an article by Atul Gawande from the June 30th issue of the New Yorker.

You can find the article here:

I highly recommend reading the article, especially if you want to understand why on earth something like this might actually work. He explains it much better than I could.

In reading the article, I realized that anesthesia dolorosa very probably was one of the "sensor syndromes" Gawande describes. At the end of the article, Gawande reports a conversation that he had with V. S. Ramachandran about doing mirror therapy, in which the latter speculates on how a type of mirror therapy might be created that would help a woman, M, who had lost sensation in her scalp. I immediately realized that this same kind of therapy might help David, that it just needed to be done on his face instead of his scalp.

Using the information from the article, we came up with a non-reversed mirror therapy to try to reduce David's AD-related pain. I will describe how we did it in later postings. For now, I will give a sense of the big picture. 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. Neither of us expect that he will have to take any ever again, although we do expect to continue to do the mirror therapy indefinitely, although we intend to taper off it experimentally and continue to need it for maintenance, as needed.

Still, this really is nothing short of a miracle for him to be both drug and pain free. Neither of us believed this was possible. I am not a big fan of hyperbole, but after everything we have been through, to call this a miracle does not seem like an exaggeration.


Anonymous said...

I am going to be trying this therapy. I had MVD this year and developed AD shortly after. This seems to be the only real chance at a cure out there, so I am going to scour and read your page until I am sure I have this precisely right. How is David's pain? When you say it worked for the pain, did it also take away the numbness?

beth taylor-schott said...

David is still almost entirely pain free. We stopped doing the therapy once he was off his meds and still pain free and we have not done it since. Every once in a while he still gets twinges, and then he uses lidocaine for them, but it is rare and the level of discomfort is nothing compared to what it was. The therapy did not take away the numbness, just the pain.