Experience with Calmare/Scrambler therapy?
 

Does anyone have any experience with, or know anything about Calmare/Scrambler therapy for CRPS/RSD?

On this site it almost sounds to good to be true *edit*

Did not work for my daughter (7 treatments) but I know many it has worked for. I was told it would not work with previous ketamine exposure but someone I talked to last night had used ketamine and a scs and is doing much better with Calmare then anything else. I also wonder if the doctor I used in Va did it correctly. He was new to it. Many doctors will let you try one time for free. I did learn from the salesman that if it is going to work, you should know right away...even if it doesn't last it will give you relief when applied.

Calmar
 

Did not work for me...but I have it all over..I think it may work best if its in one limb. I went to Dr Damato in RI. He was trained by the inventor in Italy. If you r going to have it done you might want to see him directly...

Debbie

my dr won't let me consider it. He says it doesn't have proven results. But I read of a young boy who had it and is now RSD free. But I've read more of people who have been disappointed.

I don't know what to think yet.

it doesn't hurt to try it. i have talked to 7 people now that have benefited from it. one who did worse and one who got nothing.

I actually disagree and feel it can hurt a person with rsd. For some what is supposed to settle nerves actually stimulates. Like I would never tolerate a tens unit. Also I have read a lot that with rsd one should not have items placed in the area of which is impacted. This therapy says to place it in the region of area impacted. If one has sensitivity that is severe I really question this treatment.

I actually had a free consult last week in Salt Lake City. I do not have severe sensitivity and yet it took forever to get the level up to therapeutic. It was painful for me and we had to up it very slowly. Initially, the pain was better but as the treatment went on, it began to hurt worse. The electrodes were not placed on my feet...but outside the area that is bad. They did offer me another free consult at the St. George location (which I will be driving by in July and is actually closer to home) as this location has treated people with RSD more than Salt Lake has. My aunt who has trigeminal neuralgia said it worked great for her...but I know RSD is another monster.

Just my experience.
Janel

Calmare question
 

I just made an appointment in las Vegas with Dr. Chalmers - has anyone else gone here and what here the results?

Going for 1st Calmare
 

I've had RSD for six long agonizing years. I am going for my 1st Calmare Treatment here in Salt Lake City, on Sept. 7th. From all the research I've done, including discussions with my Pain Management Doctors at the U of U Pain Clinic, I have NOTHING to loose and only my LIFE to gain back! I'll keep everyone posted! RSD changes the way the electrical pain signals are received in the brain. Calmare works by (temporarily or permanently) helping to change the electrical signals back to where they were before the pain existed. So glad they figured out how to do it! I know it doesn't work for all, but I know the odds are with me. :grouphug:

i know several people who have gone there and i have spoken to dr chalmers about my daughter. aside from dr d'amato in providence, he seems the most knowledgeable about rsd...however he is a ob/gyn that switched over to PM (but only the calmare machines..no meds). he was very nice and seemed concerned and he is one of the very few that offers free trials.

i am going to take my daughter to dr d'amato since he seems to have the most rsd experience and the highest rsd success rate. i am still not getting clear answers as to whether calmare works with previous ketamine or not.

calmare, spero pain and scrambler all have facebook pages; i know my calmare salesman did as well and he was very accessible.

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.

Calmare Therapy
 

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.

Calmare Therapy
 

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.

Calmare was great for us, and it is not a TENS device
 

*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.

*edit*

I'm S's Aunt's sister, and it's my daughter that she is talking about. The three of us went together to see Dr. Cooney in New Jersey. I'm so grateful that my sister did all that research and found this particular doctor, because the more I learn about it, the more I think that it is HIGHLY operator-dependent because it is relatively new. What we really liked about this doctor was that he, personally, did every treatment. For each 35-minute treatment, he was in the room probably at least 80% of the time, and often more. He would do adjustments on the fly as new sensations came up. Also, he didn't just take a history and leave it at that - he kept looking at all different angles as the treatment went on, and adjusting the position of the electrode pads accordingly. I think it's really critical that the doctor stays in the room with the patient for all the treatment sessions, because they're the nerve expert, and they will notice things that a tech just won't.

Anyway, as my sister said, we had really great results with the treatment. The RSD/CRPS pain is gone, but she is still very fatigued and weak and has muscle/tendon pain from not having walked for 9 months outside of a surgery boot. We've been home for just over a week now, and she is improving daily. This week will be the most that she's been able to attend school all year.

I'm going to keep working on my insurance company to cover this treatment, because then it will become more common and doctors will be able to share with each other more about what works and what doesn't work.

is there any way my daughter can talk with you about this treatment. She has had CRPS for nearly 2.5 years but it is still isolated to her knee. She went into remission for about 16 days following a series of injections but it just returned, worse than ever. thank you

This seems to be the one treatment that new posters come and create new accounts for, sing the praises about, and then disappear forever after...

There have been accounts that some of the hype has been generated by employees of a few docs that provide the treatment. Considering it'll cost several thousand dollars, anyone considering it should spend lots of time googling others feedback.

Hi Lit Love,

All I can say is that for us, it was wonderful. It was so wonderful that I swore that I would dedicate an hour every week to put the word out on message boards, because I lived through this horrible thing with my daughter, and my sister only found out about it by accident after probably several hundreds of hours of internet research (she was scouring message boards in addition to research papers, and came across a sentence asking if anyone had heard of the Calmare treatment). It really concerned me that it was so hard for her (and she's an excellent researcher!) to find out about this treatment - if she had decided to go to bed a little earlier that night, she might not have stumbled across that one line, and she wouldn't have researched it and found out that major players like Mayo are working with it, and we wouldn't have gone to New Jersey and had such fabulous results, and my daughter would have been living with a spinal stimulator trial setup right now. Instead, my daughter is walking. WALKING! She isn't pain-free, because she's so messed up from 9 months in a surgery boot, but the RSD pain component is gone, and she is improving daily.

I joined 2 boards, and have since found out that there have been some suspect posts about Calmare. One admin (not here) was pretty snippy about it. I think any kind of deception is abhorrent, and it's a real shame that (apparently) there was some deception going on with this. However, you guys don't know me, and for all you know I could be deceiving, too. All I can do is continue to post here and share our lives with you all, since we all have this awful disease in common and can be a help and a comfort to one another, and hope that you can see that this is not a deception.

There will be three (I think) major studies coming out in the next couple of months, so hopefully insurances will start covering it, especially since it's a lot cheaper than any other treatment. I'm hoping that it will be the new first-line defense against RSD, because it's certainly less invasive and painful than any other treatment.

And frankly, possibly another reason that people post and then disappear is that it works - they feel that they don't have it anymore, so they don't need to post. God willing, my daughter will stay in remission long-term. When we first got home, I almost felt guilty posting with people with active RSD, when my daughter was doing so well. But then I realized that we just never know, and she still has so many side-effects from the treatments and the disease, so it would be OK to join and post and share with others about the many side-issues that we still face. And I can share about her experience with the spinal blocks and the Bier blocks and the meds and pt and all sorts of things, and also learn from other people (the hyperbaric oxygen whatever thing was new to me - I hope my daughter doesn't need it, but she might - who knows?)

So all I can do is post and share my personal experience and answer questions and read about other people's experiences and give and receive hugs and help, and hope that people believe me. This is not a disease that gets "cured" - the best case is that it goes into life-long remission - so I will continue to post, at least until my daughter is in remission so long that it really isn't helpful anymore and Calmare gets more well-known than it is now.

I'd love to talk to you and give you any information I have and answer questions about our personal experience with it - do you want to try talking here on this thread a bit first?

Also you can talk to Dr. Cooney in New Jersey personally - we can't share links, but a Google search will get you the info. We found that it's strongly operator-dependent, and as we shared, this doctor stays with you for every treatment and is always twiddling with the settings and placements, instead of just setting it up once and then handing it to a tech - I think that's why he gets such good results. If you decide to go, his staff can help you with housing arrangements if you need it. They used to just have a nearby hotel they recommended that gave his patients a good rate, but my sister has some medical conditions where she has to have a specialized diet, and she found a long-term residence hotel with full kitchen facilities (full-size fridge, microwave, stove, dishwasher, plates and utensils) which we liked a lot. We talked to the manager there and explained the situation and said we could set up a win-win situation between them and Dr. Cooney's office, because the patients would be getting a discount, and the hotel would be getting 2-week stays from people that are going to be getting medical treatment and would be nice and quiet because it makes you tired! :D Both sides thought it was a good idea, so Dr. Cooney's staff can give you the name of that hotel, too.

God willing you will be as helped as we were!!!! :grouphug: If you go, whichever way it goes, please be sure to share with us :)

possible reason why calmare posters sometimes disappear
 

Hi Lit Love,

I have to say that I agree with my sister's thought about why people post about Calmare and then disappear (pls see end of post). I was Soooo excited when my niece's crps pain went away after 9 months of living with it. Since the treatment was non-invasive, and didn't have side-effects (that we have heard of), I was all charged up and on a mission to make sure that every crps/rsd sufferer knew about it so that they could look into it and decide if they wanted to try it!! It definitely is expensive, (around a few thousand dollars) but we were told that you can usually tell if it might be helpful in one or two treatments (out of the usual ten), which also seemed like a plus.

So after charging in, and being extremely excited about it, I learned that many people are suspicious because some unethical people lied and posed as people who had been helped. That makes me so sad, because when people (like me) are happily sharing something that was wonderful for us and others, now readers have to try and figure out if we are lying or telling the truth :-(

I know that this is not a "cure", and that it does not help everyone (as other posters have been kind enough to share their experience). However, it does help many people, and it deserves to become well enough known so that each person can look into it for themselves and make their own decision. After haunting crps/rsd websites, boards and you tubes for hundreds of hours, I only saw Calmare mentioned a few times. I finally decided to investigate it, though.

As for posting and then disappearing, it makes total sense to me. If I was living in pain, and then had a treatment that made the pain go away, I would want to share that happy and potentially helpful news with others in my situation, and then move on. I would not want to keep hearing about things that reminded me of all that pain, so I probably would "disappear" as I worked at getting on with my new life. I can see how that would not lend credence to the good reports, but I can also totally understand why people report and disappear. My niece doesn't even like talking about it at all, which is why her mom and I are the ones posting.

Anyway, I just wanted to have you consider one possibility for the "join, sing praises about and disappear" thing. In my naivety, I was planning on doing just that for as many sites as I could find. I didn't realize the complexity of the situation, and how that might make the "praises" seem faked. Frankly, in the small bits that I found posted about Calmare in various sites, it always seemed that the posters were almost afraid to say much about it, which made me think that it hadn't really been a big change for them. I can see now that they were being careful, so that people would be able to take them seriously, instead of being exuberant and therefore assumed to be lying for the company....... Sigh....

So, thank you for bring up the issue, Lit Love, and I hope that I may have shed some light on a explanation for something that may have seemed suspicious to you and others.

I'm sorry this is an awfully hard SELL. Now there are two users needed for this?

How old is the daughter/niece?

Hi everyone,
I am locking this thread now before it turns into a dispute. We can never really be 100% sure that things are exactly as they are represented on the Internet, but I really don't want past experience with some who may have been deceptive to result in everyone who speaks of this treatment being treated suspiciously.

I think it may be wise to simply say that members should do their own research and decide for themselves if a treatment is worth pursuing, always of course after consultation with their own physicians.

One thing is sure...different people react differently to different treatments...what works wonderfully for some may have adverse or zero results for others and vv.
We are always thankful to hear of someone finding relief from pain so that is a good thing.