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.
Subscribe to:
Post Comments (Atom)
5 comments:
What's been the reaction of your husband's doctors?
When you say you eliminated his pain, does that mean that whole pulling sensation, the feeling like a hundred bees are stinging your face, is gone? I've had AD since I fell on ice in February. No doctors around here (Rockford, Illinois) know anything about it, but were happy to charge me hundreds of dollars in order to tell me so.
Apparently the originator has abandoned this page. Looks like I'm on my own with "the suicide disease." "The dreaded" (in thi literature A.D. is always prefaced by the words "the dreaded") anesthesia dolorosa is irreversible and permanent; there is no known treatment. Massage has been utterly ineffective for me. So adios.
@dena.m
sorry! i wasn't getting the comments for some reason. have you looked at the original site, anadmiracle.blogspot.com? also, you'll notice that our email address is given on a sidebar if you want to email me to ask a question directly. there's no reason to think massage in and of itself would work. the non-reversed mirror is key.
beth
Post a Comment