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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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09-30-2013, 07:32 PM | #1 | |||
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It’s taken me a long time to post again on this thread, because it is a very controversial topic, as well as a very emotional and painful topic for me, so I needed to have some time and space to think how best to respond. Then we went through a death in the family, and I had to travel across the country to deal with that. Then my daughter came out of remission, and we had to go through two cycles of Calmare treatments to get her back into remission (the first one was with a provider a lot closer to home, but they didn’t have the experience, and it wasn’t working well, so we went back to the other provider and it worked great and she’s back in remission).
The thread starter asked for "this is what it's like" or "here's what to expect" personal experience stories, so I’ll share some more details now. As far as personal experience, my daughter and I have personal experience with both a TENS machine and the Calmare machine. We've both had many, many treatments with a TENS machine because of surgeries and RSD, but we just didn't know that was its name until a month or so ago when I finally realized that the electrical thingy that they were hooking us up to at PT was a TENS machine (and my PT confirmed this). So here is one big difference that I, as a patient, saw between the two : they are hooked up VERY differently. TENS machine pads go right on the sore area or close around it, but Calmare pads are just the opposite - they do NOT go on the worst area at all - in fact, they specifically stay away from it. Half of the pads go around it, and the other half go on the spine. So when my daughter was treated with a TENS machine at PT, the pads all went on her foot, close to the sorest areas. However, when she was treated with the Calmare machine, half of the pads circled around the original injury site area but stayed away from it, and the other half went on her spine. We never had that setup with a TENS machine, in all of our many treatments with it. Also, the feeling that we get is very different. As far as some helpful facts to add to the collection : the Calmare machine has its own separate, unique U.S. patent - number 8,380,317 - which was granted on February 19, 2013. Here is the link to the U.S. patent office showing the Calmare patent: here. The criteria for getting a U.S. patent is that it has to be something that is “NEW and useful” (link - here). IOW, the Calmare machine, although in the general category of TENS (and there are a lot of TENS machines out there!) has something that is so new and different that it has received its own unique patent. I think that says a lot about how different it is from a regular TENS machine. Also, highly prestigious medical institutions like the Mayo Clinic and the National Cancer Institute clearly think it's different than a regular TENS machine, because they are conducting official government tests with it. If you go to http://clinicaltrials.gov, an official U.S. government website, and search for "Scrambler", you can check out these studies. I just don't see why they would do this with something that is only another TENS machine. Anyway, I hope the facts and experiences that people are sharing will help members to know a little more about this treatment. |
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09-30-2013, 07:54 PM | #2 | |||
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I have an SCS that many people told me not to get or I read horror stories about and if I had listened I would not be able to walk more than 10-15 steps.. the SCS isn't perfect by any stretch BUT it has allowed me to walk without the excruciating pain I had prior to turning the unit on. I even tested its effectiveness by turning it off .. YOUCH it went right back on and has been running 24/7 since. Again, it doesn't work for everyone but for some it makes all the difference in the world. Keep sharing.. everyone's experience is important!! |
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10-01-2013, 03:27 PM | #3 | ||
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A very balanced and well thought out response SloRian
I've been skeptical myself about Calmare, and yours is the first post that's made me consider that there might, just might, be something in it after all.... Thanks, Bram. Quote:
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . |
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10-03-2013, 06:07 PM | #4 | |||
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Thank you so much, zookester and Bram! Your posts meant a lot to me. I had no idea about the controversy when I started posting It's very painful to be an honest person posting honestly and then have people think you're one of the shills I don't know why this treatment is so controversial, but I know it's not just a TENS machine because I've experienced both, and if it even helps a small percentage of people, then it's worth having a thread on, IMO.
Interestingly enough, we just had a bad experience with it, which I wanted to share, too, to add to the information pot. We decided to try a provider that was closer to us but didn't have as much experience. When they hooked my daughter up, they used regular TENS pads instead of the other kind that they normally use in Calmare treatments, and my daughter had a really bad reaction to the treatment - the pad sites got really, really red (bright red) and terribly itchy, and it was very painful on her back, which should NOT happen. Now we were still getting her to "zero out" on the RSD pain during treatment, but she was also GETTING a lot of pain on her back. This is NOT normal; it should NOT happen this way. But the doctor thought that since she was zeroing out, it would be OK. To make a long story shorter, even after switching to the regular Calmare pads, it just wasn't working - after 4 treatments, she was still at a 5 (when she comes out of remission, it doesn't jump right to an 8 or 9; it starts smaller). So we went back to the place that we went to before but was twice the distance, and it worked well, and she's back in remission. Anyway, thanks again for your encouragement! It meant a great deal to me. And I'm SO glad that your SCS is working so well, zookester! |
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"Thanks for this!" says: | eevo61 (09-12-2014) |
10-10-2013, 09:50 AM | #5 | ||
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I just wanted to clarify. Here's to painfree days! |
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"Thanks for this!" says: | eevo61 (09-12-2014) |
10-10-2013, 10:37 AM | #6 | ||
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Hi. I've never had calmare therapy but wish you luck if you decide to do it. My warm thoughts are with you. Take care.
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"Thanks for this!" says: | eevo61 (09-12-2014) |
12-25-2017, 10:58 PM | #7 | ||
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Can you say which clinic you went to in Phoenix that gave your daughter the good result? I want to try Calmare and don't want to go anywhere that might not be beneficial. Thank you so much G |
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09-13-2014, 03:25 AM | #8 | |||
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Thanks so much for your help,and hope you both feel much better real soon.
Being here is also a source of relief ,stress free and also a source of real valueble Information, as you know ,internet can say many things ,but real people getting and experienced treatments is a totally different picture. Hope the best for you both, my thoughts and prayers are also with you and hope,soon ,we all get the relief we desperate need . Gentle loving and caring hugs ,Jesika . Is a bless have each other to support and comfort yourselves In this difficult moments but sure ,you are both bless .
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01-13-2015, 08:32 PM | #9 | |||
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Newest update - my daughter's remissions are still staying at about 6 months. They had started at 3 months, then increased slowly to 6 months, but have stayed at 6 months the last few times. But we'll take 6 months, for sure!!
She came out of remission right on schedule (I was just thinking "hasn't it been about 6 months yet?" and looked at my calendar, and it was just 6 months) and crazily enough, BOTH machines in Arizona were getting serviced, so we had to drive to Utah. We asked our original (and the best, IMHO) doctor, the one in NJ, to fax the pad placements over to the Utah guy, and he did, so they used the same pad placements and she responded nicely and got back into remission after 5 treatments. I'm done with the cancer treatments now and everything was clear in my post-chemo visit, and I'm due for my 3-month check-up in a couple of weeks. I got my blood test done, and they'll tell me the results (God willing, I'll be clear!!). I developed post-chemo neuropathy in my feet, and I think I will try out Calmare on my feet (that's what it was originally developed for, IIRC). Anyway, she's back in remission and starting on her last semester of high school, still drug-free and out of pain during her remissions. That's my latest update, and hopefully the next remission will be longer than these last ones. Also, I have the energy now to start the insurance fight and try to get our new insurance to cover the Calmare treatments. I'll just use the same 3-page letter I wrote to our last insurance company, and hope it works, too. I was very encouraged that our last insurance company agreed to cover the treatments, and I'm seeing some other companies have started covering it here and there too. |
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03-25-2015, 10:53 PM | #10 | |||
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Update for those interested - my daughter is getting the Calmare treatments again. This last remission lasted about 5 1/2 months again. We were hoping for longer this time, but we'll take what we can get! and 5 1/2 months without pain or drugs is just so wonderful.
We were able to get in for treatments really quickly this time, so she might only need 3 "booster" treatments this time around, instead of 4. Thank goodness, the machines have finished being serviced and are back in Arizona, so we only need to drive an hour for the treatments instead of going all the way to Utah! (whoops - she just came in and said there was a little pain starting, so it looks like we'll need that fourth treatment) Anyway, the treatment is continuing to work very well for her, and thank goodness, the dr. is planning on keeping the machine because he's been very happy with it. Her last 3 remissions have lasted about 5 1/2 months (the first few lasted about 3 months). I think I'll start the fight with my insurance company to get it covered. I actually won the fight with Blue Cross, but a month later, we changed insurance companies! So now I'll have to start the fight with Aetna. I guess I'll just start with the same 4-page letter and go from there! Gentle hugs, prayers and good wishes for those fighting this disease!! I'll continue posting updates whenever I get more news. |
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