I'm from RI and know of individuals that have gone to D'Amato in N. Providence. Word is that if you have full body RSD it is not successful, but when RSD is limited to just one limb there is somewhat of a success rate. A good friend went there for quite a while for her feet (one foot is much worse than the other). It was expensive and not successful in the long term.

Most insurance companies are refusing to reimburse for this treatment. Perhaps your fed BCBS will be an exception.

The best of luck to your daughter.

Sandy

we did end up getting reimbursed but it was a nine month ordeal. the administrator did say that it was most likely going to be covered next year.

My husband went to get Srambler Therapy. He has severe pain in his left arm and back do to nerve damage in his neck.

It did not work for him. His pain went down while he was having the treatment, but as soon as he walked out the door it was back to the same old stuff.

My husband had an injury to his neck. He has severe pain in his left arm and back do to nerve damage in his neck.

It did not work for him. His pain went down while he was having the treatment, but as soon as he walked out the door it was back to the same old stuff.

JoAnnRSD: Did you ever have the therapy? I'm curious to hear an update

It all feels a little too good to be true, and it doesn't seem like there are people in CA that offer it, but I'd be willing to travel if people seem to have had a good response to it

RedDawn has had it recently for her full body and had great success. You might need to PM her.

There are some questions about the Calmare treatment for RSD. I am an RSD patient and started my Calmare treatment 10 days ago. I was a 9/10 pain level when I started and was having nerve blocks every Monday. After the 1st treatment I was down to a 3/4. I am now 6 treatments in and I am having no pain. The funny thing is during these treatments when my pain level went to a 0 I noticed my "good" foot had a very localized pain in it that felt like a broke bone. (I have had a broke femur, tibia, 7 broke bones in left foot with major surgery - that is what kick off the rsd). Anyway, long story short, with my Calmare treatment and no pain we discovered I have been walking on a broke foot (right).

For me the treatments are working and I am at a 0 pain level with the RSD. I would recommend them for anyone with RSD.

I just came back from New Jersey where my niece did Calmare treatments with Dr. Cooney for CRPS (CRPS for 8 months, spreading to most of left side from foot). It was amazing for her, from 8 on the pain scale down to zero in just 2 1/2 weeks. She now has her life back!

Typically, CRPS/RSD patients come back for a few sessions (not the 2 week 1st time protocol) in a few months, and then there is a longer and longer stretch between "boosters". When we were there, Dr. Cooney was talking about patients he hasn't seen for over a year after the first few boosters.

Dr. Cooney has seen a lot of CRPS/RSD patients - just look for him on you tube and his web page. He and his staff were just AMAZING - kind and helpful. The military hospitals are using this for phantom limb pain now, and I believe that the first large randomized controlled study is due out. The smaller studies show very good results.

Since it is non-invasive, and helps so many of those who try it, I highly recommend it. People on gaba and lyrica don't do as well, but they can work on reducing that before treatment (talk to the practitioner about it). Spinal cord stimulators don't interfere, nor does Vicodin.

*edit*

I am a Science Teacher, and got involved in researching options when I heard that my niece was going through this awful pain and was on track to get a spinal cord stimulator (!). Since I am very good at researching, I dove in for a few months and started looking for alternatives. Read about ketamin (looked risky), different kinds of drugs (side effects, and don't address the underlying issue), saw the long term studies on spinal cord stims (the only randomized, controlled study was not so good long term, and it has definite risks for the surgery to introduce new pain sites), and a few others. I saw someone mention Calmare/scrambler a few times and decided to look into it.

Personally, I like going to the controlled, scientific studies that are published in recognized pain journals, especially the Randomized Controlled Tests (RCT's) that are the gold standard for research. The ones I found for Calmare have excellent results, and a large scale one is due out soon. Also, I would guess that you can contact any of the military hospitals that are using the device for verification. I believe that they mostly use it for phantom limb pain, but many places working with PLP use the same therapies for CRPS, as there are many similarities in the brain. I also saw that Mayo clinic and U of Wisconsin Cancer center is using and doing studies with Calmare as well, and having very good results.

I found a radio talk show program "Aches and Gains", by Johns Hopkins Pain Specialist Paul J. Christo, discussing it (February 16, 2013), and saw several youtube videos with patients who it had been successful for. I started researching the various practitioners to see who had been having a lot of experience with CRPS, and choose Dr. Cooney. I'm sure that others would also be good, but he was the one I found the most CRPS info for (and he turned out to be wonderful to work with). Anyway, after all of that, I passed on the info to my sister and they decided to go for it.

As for the TENS being the same/similar, that is not the case. The big differences are in the amount of current being used, and the types of neurons being used to transmit the signal. Calmare just received a patent approval, which required that it was different than a TENS unit, and worked in a different way. I just googled it (patent no. 8,380,317) and it said that it sends the "no pain" signal on the surface C fiber nerve receptors instead of interrupting pain signals through the A-beta fibers like the TENS does. (sorry, the biology teacher coming out....)

The gist is that TENS intercepts the pain signal, but I believe that when you are not using it, the pain returns (but I don't have experience with it personally). However, the Calmare signal is providing "no pain" data to the brain using the pathway from the original injury. My hypothesis (this is from other research that I've done) is that this gives the brain a chance to realize that there is no tissue damage going on, and therefore doesn't need to assign pain to it. This then gives the brain a chance to reset/relearn the normal no pain state. This can also be done in another excellent, but longer duration, therapy called Graded Motor Imagery. (I think that will need a different post...)

As for your comment that no pain is a result of no signal, you are incorrect. As an illustration, I have no pain right now in my leg, but I can feel the pressure of various things on it, and the temperature, etc. Basically, we have 3 main sensory neurons that can (but don't have to) transmit info which may be felt as pain : pressure, temperature and chemical. The info that they send to the brain allows it to INTERPRET the signals as pain or not. Look it up in Wikipedia, under nociceptors, it also talks about the faster A fibers and slower C fibers. Lorimer Moseley has done some great work on nociceptors and pain. He has a hilarious TED talk on the subject, which is totally worth looking up!

Anyway, the bottom line is that it brought my niece's level 8 pain (with meds) down to a 0, and now she can walk normally. Her foot has some muscle and tendon aches because they are being used again, but this is also improving with use. Again, I recommend that people with crps/rsd look into this and decide for themselves.