THIS IS THE ORIGINAL BLOG. FOR UPDATES...
you can also find a link to this blog on Dr. Gawande's web site: http://www.gawande.com/misc.htm
and V. S. Ramachandran has mentioned David in at least one scholarly article: http://brain.oxfordjournals.org/cgi/content/abstract/awp135v1 Please note that there is a factual error in the piece: we were not treating David for Trigeminal Neuralgia, but for Anesthesia Dolorosa.
and they are talking about us over at TNA: http://forum.fpa-support.org/forum.aspx?g=posts&m=4876ጌ
Help us spread the word and let us know what you know about all this.
Of course, we hope this will help others. (Thus the high level of detail.) But we cannot claim that it will. We can only tell you about what happened to us.
Oh, and we tried to eliminate all spelling errors, what with the drug names and medical terms and all. We apologize if we missed any.
My husband, David, contracted Trigeminal Neuralgia in 1997, on the left-side of his face.
In 1999, in order to relieve this condition, he had a microvascular decompression along with a partial rhizotomy of the left trigeminal nerve. As a result, he was left entirely numb on the side of his face where the surgery had been done--among other side effects, including a palsied eye, tinnitus, and hearing loss--and several months later he began to have shooting, burning, throbbing, and itching pain on that side as well. He was diagnosed with Anesthesia Dolorosa(AD), an extremely rare condition similar to phantom limb pain, except that it is in the face and that the face obviously is still there, but numb.
He tried many different drugs and drug combinations for the condition. The most successful way of controlling this intense pain was for him to take Neurontin, which had such a soporific effect that he would counteract it with stimulants, including caffeine, methylphenidate, (Ritalin) and Dexedrine. He quickly developed tolerance to these stimulants, and they eventually caused severe cardiac problems, as well as substance abuse. He was disabled by his condition much of the time; even with maximum doses of Neurontin, and even when taking it with Nortriptyline, he would often have pain in the 8-9 range (out of ten) and he could not work or even provide childcare for our son on a consistent basis since we never knew when he would be awake. Torodol helped when he had severe pain, but it often did not last long enough and he could not safely have enough injections to keep the pain under control. Topical Lidocane also helped take the edge off, but was rarely very effective.
He continued in this manner until 2007 when he received a series of sympathetic nerve blocks, which reduced the pain significantly, but only for a few days at a time, and they worked for shorter and shorter periods each time they were repeated. In January of 2008, David underwent a gamma knife procedure to ablate the sphenopalentine nerve bundle. Before the procedure, we were told that 16 other patients had had the procedure, and that all of them had experienced either complete recovery without drugs or an 80% reduction in pain. So we were optimistic going in. It was only after they had done the surgery that the doctors admitted that they had never done it on someone with AD before and that all those other patients had had atypical facial pain.
The surgery had no effect as far as we could tell. It was supposed to have an effect after as little as 2-3 weeks and as much as three months. Three months after the operation, although he did not feel any differently, David tried cutting back on his meds to see if he could do with less, but even to simply mitigate the pain, he was forced to go back to his original doses after a month or so. About six months after the operation, he was in the hospital with cardiac problems and the cardiologist was concerned that the Neurontin could be contributing to the cardiological problems and reduced his Neurontin to 2400 mgs a day, which left David in so much pain that it had to be controlled with daily injections of Torodol--a solution that only worked as long as he was in the hospital.
So it seemed to us that the gamma knife had not helped. At that point, we were more or less at the end of our rope. As long as he was on the high doses of Neurontin (3200 mg) without any stimulants--which the cardiologist forbade--David was incapacitated, but also often in pain. It did not seem like we had many other options. Furthermore, the cardiologist was urging us to get him off the Neurontin in case it was contributing to the heart problems, but it seemed clear that reducing the amount of Neurontin would send his pain levels through the roof.
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: http://www.newyorker.com/reporting/2008/06/30/080630fa_fact_gawande?currentPage=all
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
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.
On the 28th of August, which was the second full day without Neurontin, we did the mirror therapy 3 times. It was clear that we needed to do it at least that much; around David's pain went up to about a five or a six. (We did a session just after lunch in the parking lot at the
But the next day we only needed to do it once, and the day after that we did not do it at all. The following day we did it once, and we have not done it at all yet today (the 1st of September) though we may do so before the end of the day just for good measure.
What we are marveling at is how David does not seem to need much tapering off of the mirror therapy itself now that he is no longer taking Neurontin. We expected to taper off the therapy at the same relatively slow rate as we tapered off Neurontin, but it just hasn't been necessary. It will be interesting to see how much maintenance it will take to keep pain levels at zero, which is where it has pretty much been for the last three days.
On the 5th of September, it became clear that we weren't out of the woods. David woke up with pain, especially eye pain in the range of 4-5 and it did not go away by late morning. So we did a session then and another later in the day, by which time it had pretty much resolved. Also another on the morning of the 6th when his pain was 1 1/2-2 partly for good measure and partly so we could make the video for this blog.
Today is the 19th of September. We haven't done anything for a while, but we needed to do the therapy twice yesterday and once today.
In order to do this therapy, we use a large mirror (about 3 feet across) that had been mounted on the wall, and one smaller one held in David's hand (more like 12'' x 18".) He sits in a chair right up close to the large mirror, with his knees pretty much touching the wall, but at about a forty-five degree angle to it (angled towards the right) and far enough to the left of the large mirror that he cannot see his own reflection directly in it. (Or else he would tape a piece of paper on the mirror to cover where the reflection would land. His AD is on the left side of his face, which is why he would face towards the right, so that that side would be most visible. But we later found out that it works equally well for him to sit on the right side of the mirror and face to the left, since almost the whole face is reflected in it either way.) We then make a pile of pillows on his lap that are about as high as the bottom of his chin. He holds the smaller mirror at the height of his face, and at a just slightly less than ninety-degree angle to the mirror on the wall, but touching the wall mirror. The pillows are to support his arm so that he can keep it there as long as we are doing the therapy, which eventually got to be as long as 15 minutes at a time.
We are going to take some pictures of all this that will show it. I imagine it is hard to visualize just from reading this.
Once we have the whole thing set up, 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. We did what we could to avoid interrupting that illusion, but that involves details I will go into later.
We found that the therapy worked best when the smaller mirror he held was large enough and high enough that I could see his entire face when I stood right behind the chair. More on that later as well.
I set the timer on my watch for the length of the session. (At first we could not stand to do it for more than 10 minutes, but as we got used to it and as we reduced the Neurontin, we worked our way up to 15 minutes per session.) I also usually asked him what his pain level was when we started.
Then, 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. Or that is how the theory goes, anyway. All I can tell you is that it works!
I will go into specific techniques I used more later. I will mention briefly, though, that I had a massage class once, and I tried to remember what kinds of things you do in a facial massage. Beyond that, I just made things up, trying to create as many different sensations as possible with feedback from David about what seemed to work. I don't know that technique particularly matters, but I did work on developing one simply so as not to go batty with boredom standing around touching someone's face for 15 minutes 4 times a day.
When the timer went off, we would stop. I would ask him what his pain level was when we finished. Usually, if his pain was mild when we started, it might be gone when we finished. It was also typical that if he didn't have any pain, then his face felt more active, or his pain went up. I would set my timer for the length of another session (but not continue to do the therapy) and then ask him again after that amount of time what his pain was. It was almost always much lower or gone by that time, unless we were going through a harder transition, when sometimes it would take a half-hour or more. Once we did the therapy twice, half-an-hour apart, and that brought down the worst pain he'd had to zero. It was unbelievable. In a sense, it still is.
Click on the images themselves to see much larger versions of them.
this is the basic set-up: the chair, the mirror, the piece of paper to cover the reversed reflection
With the pillows on his lap (we later added another one for slightly more height)
With the mirror "in position"
Another view with the mirror from the side and closer up
A view with the mirror from behind David's head
this is usually what I saw as I did the massage
you are looking at two non-reversed mirror images of his face
from where he is sitting he can see his whole face twice
This is a diagram I drew for someone who was having a hard time interpreting the photographs.
When I was doing the therapy, I tried to address all the kinds of sensation that the left side of David's face might be missing, just as a massage would include a variety of kinds of stimulation. Sometimes, I just worked on the surface of the skin, and other times I would try to massage the muscles underneath the skin, or reach the skull underneath. Early on it occurred to me that we could try things like hot and cold, wetness or lotion or kinds of cloth or things like that. But since it seemed to be working just using my hands, we stuck with that and didn't try other things. Remember that I am massaging only one side of the face, as described in the previous section.
Typically, I would start with what would be called effluerage, a lightly pressing stroke, sometimes circular, all over the face for about a minute, just to get it warmed up.
Then I would do something more like petrissage for about a minute, taking a part of the face, however much I could easily grasp, usually both skin and muscle between my thumb and forefinger and kneading it slightly, and then doing this all over the face. This was one of the more intense techniques, one suggested by David after the first two sessions. He called it “really getting in there and working.” He tends to think things can’t be effective unless they are intense.
Next, I would make a fist and rap the face all over for another minute, sort of in a “percussive” technique as they would say in massage.
Then I would keep the fist, but the knuckle to make broad but deep strokes over the face, across the brow, the cheeks, the jaw and so forth for about a minute. (Again, this was one of the more intense techniques.)
This was typically followed by deepish circular strokes with the knuckle. (Another intense one.)
After this, I would scratch all over the face, at about the intensity of someone who trying to relieve an actual itch. One of the advantages of this technique was that it was one I could control well enough to use it very close to the eye, one of the primary areas David had intense pain.
Then I would carefully use two fingers and press all around the eye socket. If you are careful, you can actually feel an edge where the eyeball fits in the orbit without poking someone in the eye. Again, we felt it was important to convince not just the face, but specifically the eye that it was OK. Then I walked/slid the two fingers all around the face.
Often, I would follow this by making a flat palm and doing something like a tapping or a slapping all over the whole face—another percussive technique. In the beginning, David sometimes would practically fall asleep in the chair, so then it was more like slapping just to keep him awake! Even without that intensity, David would have strong reactions to this technique at times, asking me to do it near the eye.
Generally, I would also stick out my fingers, like making a claw, and jab all of them all over his face, either having the tips of the fingers land all at once, or alternate them so as to make it seem to “rain” all over the face.
Another technique was to brush the face with my fingers. I would pretend that there was sand or flour all over his face and that I was trying to get it off. One of the gentler techniques.
I would also make a flat hand and then rub his face, as if it were made of wood and I had a piece of sandpaper attached to my palm.
Once I had gone through all the techniques, I would go back and start again with circular massaging, making sure to rub down through the skin and muscles around the mouth and jaw so that I could feel the teeth and gums. (David would complain sometimes that his pain felt as if he were the victim of a mad orthodontist. I was trying to counteract these sensations.) Or I would go back to some of the more intense techniques, trying to get them in at least twice. Or I would do a variation on the petrissage where I took the flesh between my thumb and forefinger, but instead of kneading, I would shake it slightly, as if making it vibrate. Or I would use a fist again but vibrate it on the surface of the skin.
Most of the time, I spent the last minute stroking the face, as if it were covered with long fur and I were trying to smooth it. This was also pretty gentle and it felt like a nice way to end.
You can see all this in the video we made.
As I said, I mostly figured out all these techniques and then came up with a “set” of them to use in order mostly to amuse myself. And it just seemed intuitively that a variety of sensations would cause the brain to “reset” itself in a more robust way.
I did the techniques in the order I describe them under the post Mirror Therapy: Specific Techniques, so you can follow along with the descriptions if you like. I had a timer on and did each technique for about a minute, except a few that are for about a half a minute. I keep taking my hand away to turn off the timer. Usually, I would keep my hand on his face the whole time.
This is a "typical" session in that I do not focus on any part of the face any more than I would in an average session.
You will notice how much David's face moves at times as I touch it. Keep in mind that he is 66 and at one time weighed significantly more than he does now. Younger and taughter subjects will not produce the same results!
David is a handsome guy, but even so, trying to watch this will give you a good sense of why I keep talking about how boring the whole thing can be!
For now the video is at youtube in two parts. The top one is the first one, and then it continues from there in the bottom one. The sound is not all that exciting, so you may want to turn it off. At one point in the first video a large truck drives by.
As you can tell from the description of the specific techniques, we would use the massage to address the pain in specific areas of David’s face. Since I knew that most of his pain was in his eye or in a specific location around his mouth, I would often spend more time in those areas. And if a particular area was more active or more painful on a given day, David would tell me and I would focus on those areas—and they would respond. Sometimes, I could even feel him twitch or flinch in response to something I did. David himself has described to me how he could at times feel himself having an "ah-ha" moment in which the pain would "give up" after a while when I was working "directly" on an area that was in pain. But I always also massaged the entire face. Early on, we found that if I focused too exclusively on the painful areas, the pain would “migrate” into other parts of the face.
When the pain in his eye was at its worst, I would rub directly on the eye and into the socket, gently, but firmly. The only way this worked was for David to keep his right eye closed and his left eye open while I was doing it. We did not do this very often, as it was much easier for David to keep both eyes open, but when the eye pain was very intense, it did give almost immediate relief.
When we were figuring out how long to do the sessions for and how often to do them, all we had was Gawande’s description of a patient he had worked with who did them “a few times a day, for fifteen minutes or so at a stretch” When we started out, though, we could barely do ten minutes at a time. Partly that was the mind-numbing nature of the thing, partly it was just so surreal for David to experience sensation on that side of his face. But we did get used to it fairly quickly. And of course, the fact that we could tell it was effective relatively quickly was also a great motivation.
We did ten minutes at a time as long as we were reducing the Neurontin by 400 mgs at a time, and that seemed to work fine. Then we seemed to hit a little bit of a plateau around 1600mg and started increasing the length of the session by one minute every time we reduced the Neurontin, which we did by 200mg at a time after hitting 1200mg. This was not much of a stretch, and by the time we were done, 15 minutes did not seem long at all. In fact, doing David’s face even came to seem therapeutic—sort of like playing with playdough.
We varied the number of times we did the therapy in a day depending on how active and painful David’s face was, though we only did it as little as two times hardly ever and on account of externals in our schedule that were beyond our control. Three times a day was common, especially on easy pain days. Four was absolutely necessary in getting over a hump when the Neurontin had just been decreased.
We’d gotten good at making sure David took his meds four times a day at exact times, but we were never so exact with the timing of the sessions. We fit them in as we could and as we needed to. Usually, we’d do one within an hour of getting up and one in the evening before David got too tired. Otherwise, it varied greatly. This did not seem to make a difference in the effectiveness.
We did a number of things so as to try not to disrupt the illusion produced in the mirror that I was touching the left side of David’s face.
Once I got used to what I was doing, I would stand behind the chair that David was sitting in and reach my hand around on the right side. That way, David would not see me on his right side in his peripheral vision as he looked into the mirror.
I made every effort not to touch the left side of David’s face while he was in front of the mirrors. I was concerned that if he experienced numbness in his right side while I was touching the left it would reduce the effectiveness.
I also found it useful to put my left hand on his head to steady it as I massaged the front of the face. I made an effort to put it right in the middle of the back of the head so it would not seem like it was on either side in particular.
In addition, if David had an itch or had to move for any other reason, he would close his eyes so that he would not see his own movement in the mirror. Otherwise, he held fairly still, though if you know David, you will understand that I had to remind him often that he was not supposed to be talking.
At one point the overhead light in the room where we did this went out and we started using a desk lamp which produced more focused light. I was concerned that this might confuse the brain and so tried to put the light more or less in front of David so as to not produce significant shadows on either side. Still, even when this was impossible, it did not seem to make a difference, which is consistent with what I learned in graduate school about how we perceive light and shadow: we do not have a strong expectation that it will be consistent within any single scene. So I am guessing that is really pretty much of a non-factor.
It was particularly helpful for me to be able to see David’s entire face by looking over the top of his head into the mirror he held in his hand. I quickly got used to “seeing” in the non-reversed mirror and so could avoid touching the left side of his face, poking him in the eye, or holding my hand in front of him so that he could not see himself in the mirror.
It was also helpful because it was very hard for David to pay attention to the mirror for extended periods of time. After a while, watching someone touch your face is just not all that interesting and so is hard to do for very long, similar to meditation. So part of my job was to watch where David was looking in the mirror and to stop whatever I was doing when his eyes strayed elsewhere. This would always get his attention and he would come back to focus, at which time I would continue the massage.
When we were traveling, our mirror was too small for me to be able to see much of him in it. By that time I had practically memorized his face, so the technique wasn’t hard, though I do wonder how much he let his mind wander. Still, who’s complaining—it worked!
As I say, it was a little boring for us to do this over and over again, and listening to music helped, though we rarely set it up. This was partly because it was another detail to attend to and partly because, as meditators, we aspired to be able to do it without having to distract ourselves from it. I think we did a good job of meeting that aspiration. If we’d listened to an audio book, I imagine that would have also helped the time pass.
It was especially hard on our four-year-old son when we would “do Dad’s face.” And when he started acting up during a session, that stressed David out and seemed to make the therapy less effective. But we did find good ways to distract our son. One was singing. He was very happy to sit and listen to me sing while I did the sessions. We also got a little case of toys that he was only allowed to play with during the sessions. He called them his “do Dad’s face toys” and for a time he was very excited about playing with them. He would ask us, “is it time to do Dad’s face?” which had the added benefit of reminding and encouraging us.