Hi Stomper 1,

How long has your daughter had CRPS? Do you know if the injections were Sympathetic lumbar ganglion blocks or Bier blocks, or both?

My niece received both, and had limited relief from them, but the crps pain would return, and continue to increase and spread, to the point where they were planning on a spinal cord stimulator.

I have been learning that many people are skeptical about this treatment. For us, it was amazing, but it does not work for everyone. Here is what we heard from the doctor that my niece saw. He said that:

- he believes that the success rate is partially operator dependent. He thinks that people who are better trained in the nervous system will have better success rates.

- for the crps patients that he saw, he said that he had about a 70% success rate for people who had an accurate crps/rsd diagnosis. He had my sister send out a lot of records before we came.

-it was not uncommon for the pain to start to come back after some number of months, and then the person needed to come in for a "booster" (a couple of visits as opposed to 10-12 visits at the initial treatment) to reduce/eliminate the pain again.

-in his experience, for those who needed the boosters, the time interval between boosters usually lengthen. He has patients whom he does not see any more, and others whom he hadn't seen for over a year, because they do not have the pain anymore.

-he was very clear that it was NOT a "cure", and said that new injuries were a definite risk to have the crps start from that location. However, he expected that the treatment would also help those new locations if they did occur. This is very helpful to reduce the fear factor, so that my niece isn't afraid to live her life.

As a new member, I can't post links (which makes sense), but you can google Calmare, find the clinics and look at their web pages for some helpful information. There was one website, I can't remember whose, who had a page with information on studies that you could give to your doctor. Since it recently got a patent, that would also be a good thing to give them, I would think. The patent explains why it is different from a TENS machine, which is a common misconception. I also explained that in another post.

Obviously, you should be discussing this with your doctor, but remember, doctors disagree among themselves about new therapies. If you have researched it and it seems like something you want to try, I personally wouldn't let my doctor stop me. (I am definitely in that class of people who feel that doctors do not have all the answers, and distrust doctors who act as if they do and are not open to new ideas...) Insurance companies in some states are starting to reimburse for Calmare, and that is increasing.

You might also look into Graded Motor Imagery, which seems (to me) to be another way to help retrain the brain to recognize that there is no more actual tissue damage going on. It also helps the brain to learn how to localize where the pain is occurring instead of letting it spread. However, it takes more effort and time than Calmare. I suspect that it would be good to learn and use after Calmare to reduce the need for boosters. It has 3 steps, the last one being mirror therapy, which you may have heard of. There are several studies specifically for GMI and crps/rsd, and they look good. However, if it was me, I would do Calmare first, and then GMI for ongoing prevention.

I hope that helped some. Feel free to write back with any questions. I would also be open to your daughter contacting me, but frankly am not sure how to do that "off-line" (very new to posting) Let's do it here for a bit, and then figure out the "off-line" contact if your daughter wants that.

Good luck in all of this, I can't even imagine the strength your daughter is using to deal with this awful disease! More power to her, and to you for looking for something to help her!