Calmare Therapy
 

My niece just had an amazing pain reduction therapy called Calmare or Scrambler therapy for her CRPS/RSD. While we were there, we learned that it has provided a huge pain reduction for many CRPS/RSD sufferers. It is at that place where some people are starting to hear about it, but I wish it was more widely known and available due to its extraordinary results in reducing pain and the circulation and temperature issues that come with CRPS. My niece, Sarah, went from a pain level 8 to a 0 after 2 1/2 weeks, and has none of the color changes and skin temperature issues that she used to. After a week, she was just enjoying the feel of cold water on her foot because it finally felt "cold" again instead of burning! We would watch her just touch her leg repeatedly just to see what "touch" felt like again.

It is non invasive (instead of the spinal cord stimulator that she was going to be having if it didn't work), and you can usually identify if it will work or not in the first one or two sessions. This is one of those "too good to be true" sounding therapies, but it WAS true, at least for us! We owe a big thanks to the person who posted something about it in this chat room!

I am a science teacher, and spent hundreds of hours researching therapies for CRPS/RSD before I even came across the therapy name. After that, I spent a lot of time researching the scientific trials (great results, peer reviewed, documented and published in major pain journals), the use of the therapy in all four branches of the armed forces (because it is so effective in drug-free pain reduction, the government even bought more of the devices used), and finding locations that have good success working with the RSD/CRPS population.

We saw Dr. Michael Cooney in New Jersey, and he and his staff were awesome! They were kind, funny and helpful. You can find out more about it at his homepage - *edit* and you can also see some of his patients talking about it on youtube.

Good luck to all of you who are going through this - you are truly amazing in how you cope with something so difficult - blessings to you all!

I've heard it's grrat and I've heard it's a scam - please help
 

Thanks for the post Sarah's Aunt. My daughter has CRPS and we've had limited success with injections but it has recently returned - this time a bit worse than it was before. I have read a lot about this therapy but my doctors are very skeptical. Would it be possible for my daughter to contact you or your niece to talk about the treatment?

thank you!!!!!

My sense is that Calmare is often worth a try. There are not a lot of clinical trials of it (and none, to my knowledge specifically for CRPS-mostly for cancer related pain). My daughter and another child we know both tried it and got relief to different degrees, but it did not last for either. I have heard anecdotal evidence of others for whom the relief is quite long-lasting. You can find a treatment center here: http://www.calmarett.com/locations.html

I'd love to hear other people's experiences with it.

Lori

Yes, that's what I think, too. It's not a magic bullet, but it just didn't seem to be well-known for a relatively new RSD patient like my daughter, and I've heard that you have a better chance for remission when you've had it for a shorter period of time, so I wanted to bring it up on a couple of discussion boards and shoot the breeze about it and hear about other people's experience with it.

Yes, I believe that the new major studies coming out in June or July are for cancer-related neuralgia, and thank God for any treatment that can help cancer patients!!! But the types of pain are related, so I'm hoping that it will also help start studies and get insurance coverage for RSD patients.

How long did it last for them, if you don't mind sharing?

I'd suggest making sure that they're certified, and then ask how many RSD patients they've dealt with, and their success rate (and how they define the success rate), and if the doctor does every treatment or if they hand it off to a tech. Those are things that I found helpful.

Me too! I'm really hoping that we hear from people that have had it done a while ago, and how they are now.

here are some things I have learned
 

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!

For my daughter (who had 2 1/2 weeks of treatment), it never lasted more than a few hours after the treatment. Although I don't know the details, her friend had treatment 3x (each one lasting 1-2 weeks), and although she has said she thought it was helpful, I know she still has significant pain that is making it hard for her to go to school. Both kids have pain in multiple limbs and I have also heard anecdotally that it seems to work better if the pain is limited to one limb.

I'm so sorry to hear that :( It certainly isn't a magic bullet, but from what I've heard and experienced, I think it's much better than the rep it has. I think a big part of why some treatments don't work as well is that it is so new that there just isn't a lot of experience out there. If there really is merit in it, the treatment record will get better over time - we'll just have to wait and see. Also there seems to be a wide variety in the level of the practitioners (there are non-certified practitioners out there) and how they do the treatments (whether they stay and do it themselves, or hand it off to a tech). I know it's heartbreaking and frightening to try any new treatment - we certainly went into it with a negative outlook ("it won't work for us"), which is why our good results are even more of a positive testimonial. I'm so sorry your results weren't very good. Was your doctor certified, and did he/she do all the treatments?

Anyway, any information is useful to pass around, both good experiences and bad experiences.

Yes, I've heard that, too, but my doctor has had good success with even whole body, but finds that it just takes a longer first treatment period, and more booster treatments. His main problem has been with people on ketamine. He has limited, but still worthwhile, results with them.

Your comment about school reminded me to post some info on a school program that has been extremely helpful to my daughter - the 504 plan. I'll start a new thread on that - please take a look when you get a chance, because it might help with school difficulties.

Update - We're coming up on 3 weeks since the end of treatment, and my daughter is still in remission - there is no RSD/CRPS pain at all. She still has pain from plantar fasciitis, and muscle and tendon pain, and a lot of fatigue, but no RSD/CRPS pain.

I'm a little worried about the fatigue - the doctor said that the patients are really fatigued after the treatment, especially the first week, but my daughter seems to be still really fatigued. I think I might get some bloodwork done on her if she isn't better by next week. What I'm really afraid about is that she might be getting CFS, which is what I've had for 30 some years now, and is really horrible, too. I'm hoping that she's just on the slow end of recuperating, though.

Anyway, that's an update for anyone that's interested - I think it's good to have lots of info on all different kinds of treatments. I'm hoping that some other people with experience with Calmare will chime in soon!

Calmare treatments
 

I have just finished my initial 10 treatments with Dr. Michael Cooney in Rutherford NJ and I am completely amazed. I arrived in NJ with a strong 10 pain level and finished the treatments at a 0 pain level. The side effects of RSD/CRPS are also gone. I strongly recommend this treatment to every one!!

It is non-invasive and medicine free.

I have been off all RSD/CRPS meds for a month and feel fantastic, also have lost 8 pounds, stopped limping, had neuropathic rash clear up on hands and face, had extreme heat leave my body and can feel cold once again.

The staff is really nice and do everything to make you comfortable.

It might be worth considering that the physician directing one clinical trial of the device -- Dr. Toby Campbell at the U. of Wisconsin -- withdrew his name from the study and didn't even bother to start it.

His original plan was to design a "sham" machine that looked like the "MC-5A" -- aka "calmare" -- but which didn't deliver the alleged "scrambled" signals.

Closer study, however, revealed that the device was nothing more than an ordinary TENS device -- and not even a very good one at that.

As it turned out that all the "MC-5A" actually did was generate shocks at random -- that is what constituted the "scrambled" signal.

Taking the time to design a "sham" device as a control no longer seemed worth the effort -- if, indeed, it was even possible to control for random shocks.

Also consider that the device has been promoted in the US for over 4 years with participation at ASCO and other medical meetings, yet has probably not sold not sold even a half-dozen of the devices to private physicians.

Part of that, of course, is due to the fact Medicare and insurance companies won't reimburse its cost since they consider it "experimental." However, if it was truly effective, one might reasonably expect it would attract more interest from clinicians.

Hi oscarlonzo,
I see that this is your first post - could you share your personal experience with RSD? I have some responses for the rest of your post, which I'll put up when I get a few minutes.


Hi Deenamoo,
I'm SO glad to hear that it worked well for you!!! It's so great to hear of ANY treatment working, because this disease is so awful :( It's also helpful to hear when something doesn't work, because that just adds to our knowledge. I'd love to hear some updates from you as you have any, because personally, I like to hear information about a variety of treatments. My daughter has been in remission for a month now after the Calmare treatments, but she's having a LOT of fatigue still, kind of like the fatigue after the initial treatments. Are you having the fatigue issues still? Also, could you share a little more about what your RSD situation was before the treatments? Where did it start, what started it, did it spread, etc.

It's funny that you mention that you can feel cold again - that's one thing that my daughter was amazed at. One day I heard the bathtub running for a couple of minutes, then stop. My daughter came downstairs and said that she was running cold water on her foot just for the sheer pleasure of being able to feel cold on her foot again, instead of burning! :D

Hi Oscarlonzo,
I'm wondering where you found out the info you posted. Was it published somewhere?
Thanks,
Lori

No, it was not published. I was doing research on the company that sells the device and I noted that a study allegedly being conducted by Dr. Toby Campbell was at least six months overdue. Since the study had started over two years ago and involved only 30 patients, I found it odd that it would be so late.

Upon reviewing the "clinicaltrials" website, I discovered that Dr. Campbell had in fact removed his name from the study about a year ago. I was able to contact the engineer who was working with him to try to develop the "sham" device and he filled me in on the other details.

Fortunately for me, my "personal experience" with RSD is limited to what I have read posted by others.

I was drawn to RSD, in particular, by "a retired French prof -- retired due to disablity, not age, and certainly not by choice" who has a delightful blog called "elle est belle la seine la seine elle est belle."

There she has posted several times about the calmare -- the most recent one entitled "CALMARE: Help Stop This Scam!"

*admin edit*

Apparently, Dr. Campbell decided to present what data he had collected at ASCO. The board doesn't allow hot-linking so you'll have to google "Abstract No:
9635" at the 2013 ASCO meeting if you wish to read it.

He apparently did 14 of the planned 30 subjects before withdrawing from the study.

And his "sham output is neither a TENS nor MC5A and is designed to be nontherapeutic..." -- likely a reflection of the difficulty designing a "sham" for randomly generated electric shocks.

Even so, his final conclusion was "MC5A was not significantly different from sham therapy for the primary outcome."

In other words, the calmare was no better than a "nontherapeutic" buzz.

It looks like this is the blog that oscarlonzo is referring to: http://prof-de-rien.blogspot.com/201...this-scam.html, and this is the ASCO website, but I searched for the abstract he referred to and was unable to find it: http://abstracts2.asco.org/

This post is with my mrsD hat on....

Here is a link to the 2013 paper:

http://abstracts2.asco.org/AbstView_132_115259.html

It is a very very small study IMO.

The topic is chemo induced neuropathy, not RSD per se.

Note that originally the calmare did not include RSD as one of the conditions it treated.

Google "calmarett" and "treatmentprotocol**" and you'll find a list of conditions that the promoters claimed it could treat:

"Post-Surgical Neuropathic Pain (PSNP)
Post-Herpetic Neuralgia
(Sciatic and Lumbar Pain)
Narrow Canal Syndrome SCS
(Putative neuropathic pain)
Failed Back Surgery Syndrome (FBSS)
Pudendal Neuropathy
Brachial Plexus Neuropathy
Low Back Pain
Phantom Limb Pain Syndrome"

They also claimed they could treat pain associated with a variety of "ONCOLOGIC PAIN INDICATIONS" and listed pretty much every kind of cancer there is.

However, the ONLY blinded, randomized, and controlled study that has EVER been done with the device is Dr. Campbell's study of CIPN.

And when faced with a truly scientifically valid test, the calmare failed miserably.

The size of the test is irrelevant for the simple reason that the seven patients in the test group demonstrated zero effect.

He really didn't need to go any further -- the handwriting was on the wall. Seven in a row showed no benefit so why spend time, money, and effort trying to track down someone it might eventually work on?

But even without the study, anyone considering the therapy should consider whether it's reasonable that a single device applying a current through surface electrodes attached to the skin could possibly treat every kind of pain from every kind of source.

And, of course, as best I can tell, the therapy doesn't come with a money back if not satisified guarantee. So if it doesn't work, you can bid adieu to your give or take $2000.

As the saying goes, "buyer beware."

oscar, there are quite a few errors in the things you're saying. Unfortunately I can't get to them quickly, because my daughter is in the middle of finals here in Arizona, and supporting her is a higher priority. However, this one was so easy to refute that I'm taking a minute to do so.

The doctor I went to, plus the 3 other doctors at clinics that I've called so far, will ALL reimburse you for any treatments not used. Typically the protocol is 10 treatments, and some ask for payment up front (not unusual for non-insurance-covered treatments; every kind of non-insurance-covered treatment I've ever had requires this) while others will offer a discount for payment up front. But ALL of them will reimburse you for treatments not used.

Also, ALL of them say that you will know by the first treatment, or second at the latest, if it will work for you or not, so there is NO REASON for a person to continue treatment and "lose" $2000 if it isn't working.

If by "doesn't work", you are talking about if it comes back sometime after the treatments (for the many people that it has helped tremendously, including my daughter and myself), they tell you UP FRONT that if it works, you might need some "booster" treatments, but the difference is that because you'll come in before your pain levels are high, you'll need less treatments. And NOTHING, including all the treatments that my daughter went through before Calmare, came with a "satisfaction guaranteed or your money back". Calmare is no different.

So I hope that clears up one of the errors in your post.

*admin edit* You say it seems strange that people come to discussion boards and make long posts praising it. However, I don't think it's strange, because that's what I did when my daughter was put into remission after the treatment, and I saw her walking normally down the hallway at the hotel for the first time in 10 months. I was absolutely THRILLED, and I wanted to share it with others that may not have heard about the treatment. What I think is REALLY strange is that people that don't have RSD, and that don't seem to even know anyone with RSD, are so invested in popping up at the first mention of Calmare and posting very similar negative talking points about it (this is happening on several boards). Now THAT seems strange to me.

*admin edit*

Anyway, GTG pick up my daughter, but I'll get to the other points that have problems in your multiple posts when I get a chance.

Well, of course, it seems only reasonable that they "reimburse" the patient for any treatments not taken -- although, in that case, it seems odd to demand full payment up front, doesn't it?

As far as any claim they can tell you within only a few treatments whether it will help, that doesn't appear to protect protect the consumer if the practitioner turns out to be wrong.

If the practitioner misjudges and the patient ultimately gets no benefit, will the patient still be stuck with the $2000 cost?

By the way, did you ever stop and ask them WHY it costs $2000.

After all, the device itself undergoes nil wear and tear during therapy -- it just generates voltages beneath the electrodes.

The only real expense to the provider is the cost of the electrodes and that's only a few dollars.

So why not simply offer a money back if not satisfied guarantee?

Surely satisfied customers would be thrilled to pay if the therapy worked and relieved their pain.

And if one or turned out to be a "chiseler" now and then, the practitioner would sustain minimal loss.

It seems perfectly reasonable to me.

I removes the risk from the consumer entirely while exposing the provider to minimal financial damage.

And a miraculous painkilling device like the calmare surely would attract swarms of customers under such risk free conditions, wouldn't it?

Sorry folks but as seems to always happen on threads related to this treatment, it has become a back and forth between an opponent and a proponent, and moving away from the purpose of the forum, and so we feel this thread has now run its course and will be locked.

We trust that members are perfectly capable of personally investigating these claims for and against the treatment, and consulting with their own physicians about it.