Monday, November 10, 2008

Can You do the Mirror Therapy By Yourself?

Hello, Everyone. Sorry it has been so long. We have gotten busy now that the school year is back in swing. Someone recently emailed me to ask if you could do it on your own. This is the third or fourth person to do so. It is hard to have someone around all the time. This is not a detailed answer, but here is part of the email I sent her:

Here is what we have been able to figure out about doing it yourself:
1) Probably you cannot effectively give yourself a massage while watching in the non-reversed mirror. Possibly, you will lose the whole effect of any mirror therapy if you try to do so. I can explain why that is the case, but that is my best, short answer. Given the risk, David has not tried it. (Just a reminder, I am not a medical doctor of any kind.)
2) Your next best option is to sit in front of the non-reversed mirror and make exaggerated facial expressions that are bilaterally symmetrical. (I am guessing that your AD is only on one half of your face, either the right or left side.) So no winking or anything like that, but it is hard to make asymmetrical expressions without effort anyway. You might also try chewing, which has been specifically recommended to us. The idea here is that, although someone else is not touching your face, by moving the muscles on the side that has feeling, you will generate sensation, which your brain will interpret as occurring on the numb side while you are watching yourself in the non-reversed mirror. The sensations won't be as intense as with the massage, but sensation plus vision is better than just vision, which is your third option.
3) Theoretically, if you watch someone else having their face massaged, it should give you some relief. This also needs some explaining, but basically, the mirror neurons in your brain will fire without anything to counteract them on the side where you are numb, and therefore on some level, you will will experience the sensation of the massage yourself. David and I did try this, and it did give him some relief, though not as much as the mirror therapy. Basically, we just sat opposite each other and I massaged my own face for about ten minutes. An article I read says that these therapies work best when you can put together actual sensation and vision, which this does not do. But we thought it would be likely that those who did not have other options could find/make videos of someone having their face massaged that they could watch several times a day if they needed to when massage was not available. That this should theoretically work has been confirmed by a physical therapist in Germany who is an expert at this sort of thing. Probably, you want the video to be of someone else, not of you. And it only seemed to work when I massaged both sides of my face, not just one. I think it was too much for his brain to figure out which side it ought to be corresponding to that same side in his body.

Our experience is that there comes a day when the pain relief is great enough that you can be off of medication and not doing the mirror therapy anymore and the level of pain is low enough--if not gone--that you will not be motivated to do mirror therapy any more. Then, theoretically, you are free and clear. In David's case that took less than two months. I can't even remember the last time we did mirror therapy, though he does use lidocane every once in a while. So if the mirror therapy is the only thing that works, it may be worth it to pay a massage therapist to do it during the day or something like that. I don't know your situation.

Let me know what does and does not work. I am collecting anecdotal information and will update the blog when I can.

Thursday, October 2, 2008

The Anesthesia Dolorosa Miracle is Ongoing!

Hello, everyone who has been reading the original blog. Much has happened since we put it up. The most important thing is, David is still relatively pain free (except when we aren't able to do the therapy for too long at a time.) One of our big questions is whether or not this ever "works" for good. Will we need to keep doing this forever? Right now we only do it as much as we need to to keep the pain down. But if we were focused and went back to doing it four times a day, would the brain entirely reset itself so that we did not need to do this any more? We don't know. I've tried to research this online by looking at studies of mirror therapy for phantom limb pain, but I haven't found any that say how long it needs to be done once the pain is brought down. This is a relatively new field, but I do have a question in to one of the doctors involved in the clinical trials, so hopefully we will hear more back on that.

Also, I contacted Dr. Ramachandran and Dr. Gawande to let them know about what we had done and to thank them. Both responded. They were both gracious in accepting our thanks and excited about sharing the results. Dr. Gawande has even put a link to the original blog on his website!

There are a bunch of things I need to cover. I am just going to list them here so I can remember them and so that you know what is coming in future posts.

1. Can you do the therapy by yourself?
2. How, exactly, do you do it?
3. Is there an alternative for those who are not hemi-facially numb along a vertical axis?
4. Also, we've been keeping a pain log and a record of when we do the therapy. I intend to post that here as well.
5. A list of links to forums discussing this approach.

I am sure I have forgotten something. Prompt me if I have. Emails are welcome. See "Contacting Us" above.