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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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08-21-2013, 04:52 PM | #1 | |||
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Do they stick e stim pads on you? Where on the body? Or what is actually done? How long does a session take etc?
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08-21-2013, 11:41 PM | #2 | |||
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oh, OK - here's some more info:
The first treatment cycle usually consists of 10 treatments over 2 weeks: you go Monday thru Friday, then take the weekend off, then go Monday thru Friday. Each treatment is about 35 to 45 minutes long. There are 5 pairs of pads hooked up to the machine for a total of 10 pads. They start by placing 5 pads around (not on) the original injury site, and 5 pads on the corresponding spot on the spine. For example, for my daughter, the doctor placed 5 pads around the injury site on her foot (again, not ON), and then 5 on her spine corresponding to where it was on her foot. Then he slowly turns up the the electricity on each pair of pads, one by one. He would slowly turn the dial, and then she would feel it either on her spine or on her foot, and then he would turn it a little more, and she would feel it on the other place. Then he would start with the next pair of pads, until she could feel all 10. What you feel is a kind of buzzing/popping/tingling type of feeling. It doesn't hurt - if it hurts, he'll turn it down. The signal varies constantly, so the feelings are constantly changing from nothing to the buzzing/popping/tingling. Within 5 minutes into the treatment, the patient usually has the pain go way down or even disappear. The doctor will adjust the dials halfway thru the treatment, usually a little higher. After the treatment, if it went well, the pain will be either way down or gone. The pain will come back sometime during that day, but usually comes back at a lower level. Each day, after each treatment, the pain relief lasts longer and comes back at a lower level. If the pain gets down to 0 and stays there, then the doctor will stop early - some people don't need 10 treatments. My daughter ended up needing 13, because half way through, she dropped a heavy bowl right on her affected leg and got a huge bruise, and it set her back a bit. Typically, patients will need "booster" treatments down the line. My daughter's remission lasted 3 months, then she needed 4 treatments to get her back into remission. The remissions follow the same pattern as the treatments - they typically last longer, and the pain comes back at a lower level. This treatment, like most treatments, doesn't work for everyone, but it is sure working well for many people. It's certainly an option that people should consider, IMO. Insurances are starting to pay for it, too - as I mentioned above, I wrote a 5-page letter to my insurance company explaining how it saved them thousands and thousands of dollars, and they decided to cover it. And that was HealthNet - a major insurance company. The doctor I saw was Dr. Cooney in New Jersey - very nice and very experienced, especially with RSD. Let me know if you have any more questions that I can answer. I know it's nice to hear from people that have actually gone through a procedure. |
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08-22-2013, 12:21 PM | #3 | ||
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I went through the treatment and for me it made things worse. I think it works better for patients when its localized where as mine and the 2 other patients that were going through it the same time all had the same result. For my full body he started by placing the pads on my stomach and he said he would work his way out. But being full body I would get out of a treatment and the pain from head to toe would just go full body and wouldnt go away. I do know a few friend where it has put them in remission and they are in college or going to school. Theirs was in either there leg or arm. Is there anyone thats had the treatment and have full body work? I went through 2 weeks of treatment and the surging of the pain back and forth just made the pain worse. But this is just me many have different experiences and we all respond differently.
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08-22-2013, 05:11 PM | #4 | ||
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The calmare equipment is a TENS machine so whatever the protocol and electrode placing being used by any given doctor or operator, it will function in exactly the way that a normal, multi-channel TENS machine does - electrode pads attached to the skin and an electric current run through the electrodes which is controlled and adjusted by the main unit. It contains pre-programmed cycles.
I'm not saying this to upset anyone or create any arguments about the nature of this particular treatment. I am very aware of how controversial it is and how many arguments there are about it. I am only relaying the absolute facts about the equipment being used. In front of me I have copies of their FDA 510(k) Medical Device Application and the corresponding FDA Approval Letter and it is absolutely a matter of indisputable fact that this device is a nothing more than a simple multi-channel TENS machine. That is what the manufacturers of the equipment have themselves said that it is. In fact, they have based their 510(k) application on "Predicate Devices" which are 2 specific, listed existing models of TENS machines already manufactured by other companies which were already on the market at the time of their application. This allows them to get their approval more easily - they apply on the basis that their device is equivalent in construction and effect to a device that is already on the market and already has FDA approval. The 510(k) makes it clear that the device is only designed to provide symptomatic relief of pain. That, as you will all know, is exactly what any simple multi-channel TENS machine which you can purchase from a high street chemist or on the internet, claims to be able to do. |
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"Thanks for this!" says: | AZ-Di (08-27-2013), Brambledog (08-22-2013), CRPSinCT (09-18-2018), daylilyfan (08-22-2013), Djhasty (08-24-2013), eevo61 (09-12-2014), mama mac (08-20-2015), moosey2me (11-17-2013), Nanc (08-22-2013) |
11-17-2013, 09:38 PM | #5 | |||
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"Thanks for this!" says: | eevo61 (09-12-2014) |
09-11-2014, 05:59 AM | #6 | ||
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I tried one of them around my ankle where the RDS orginated and I had no deep pain or in fact no deep sensation of any kind at all like I get elsewhere. I think it was due to edema? But I can mess with this some more if I'm using the right kind of tens machine. These are actually stronger and go deeper than a regular tens machine (Moderators, I hope this link is ok to post. If not please remove): http://www.amazon.com/AccuMeds-Inter...ferential+unit Any help appreciated. Denise |
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"Thanks for this!" says: | eevo61 (09-12-2014) |
09-12-2014, 01:00 AM | #7 | |||
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Thanks for sharing SloRian,
I know many times we all might not agree in Treatment s and opinions but the main reason for us to learn. I have scs and also had several months with tens us it's .always a question about calmare and many never answered me,instead they get attacking each others with things that to me was not the question and never got any response and at the end ,no answer I was looking for so my questions is : I saw e machine on the dr tv program and was wondering ,have you daughter tried TENS units ,work the same ? so similar ? Also I already have scs ,is there any way you ask your dr if a patients with spinal cord stimulator can receive calmare therapy ,please a. I will truly appreciate and I'm glad you stood up and what you believe is right for you daughters heaths also ,have she had ketamine infusions also wondering about it. Also,I'm so,sorry for all you are dealing with and hope soon a good break coms your way for you both.always keep in mind you are also a priority for now ,your daughter can't do better if emotionally she knows you are not ok,so,please take care of you as well,and hope the healing you both need and deserve comes your way soon. Gentle loving hugs with caring love Jesika .
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09-12-2014, 01:43 AM | #8 | |||||||
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Right from the start, my daughter has helped me. She offered to take me to all my chemo appointments (and they typically last 3 hours or more), and when my hair started falling out, she went with me to the hairdressers and we cut off our hair together - I got my head shaved, and she cut off her long hair to give it to a charity that makes wigs for kids with cancer. She has been an incredible support for me. Quote:
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"Thanks for this!" says: | eevo61 (09-13-2014) |
10-10-2013, 09:44 AM | #9 | ||
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11-17-2013, 09:31 PM | #10 | |||
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I agree I would like to know more too..like what is it?How to they apply?how long does it take?anything that would help us understand..thank you very much
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"Thanks for this!" says: | eevo61 (09-12-2014) |
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