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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Old 05-28-2012, 08:00 PM #1
jasper27 jasper27 is offline
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Default Calmare Therapy (Positive or Negative personal stories)

I've seen a couple posts on here asking about Calmare so no intention to duplicate anything but wanted to see if anyone would post that's had the treatment themselves and had any "this is what it's like" or "here's what to expect" stories... how you liked the Doc? What city you did it in (and is there anything interesting to do there in the down time?)? ... then, the important part... did it work for you? or also want to hear if it didn't... thanks
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Old 05-30-2012, 05:44 AM #2
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My daughter had 7 treatments 2 yrs ago to no avail. I think if you do a search you willl find mine and others posts from awhile ago.
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Old 05-30-2012, 04:29 PM #3
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Default Calmere

No response... Rhode island..dr d'amato...very nice

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Old 07-28-2013, 06:32 PM #4
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Hi Jasper,

My daughter had excellent results - she went into remission after 12 treatments. The remission lasted for 3 months (within the typical range), then it started to come back and she needed 4 more treatments to get back into remission (also typical - we're hoping this remission will go 6 months or longer - that's the pattern). It's been almost a month now and she's going strong. We went to NJ, and the doc and his staff were professional and kind and very friendly.

I have a great update, too - I wrote a 5-page letter to my insurance company, trying to get them to cover the cost (I pointed out that my daughter was scheduled for a $60,000 SCS, and was put into remission for under $3000 with Calmare, which is quite a savings for the insurance company). I just got a letter from our insurance company yesterday, and they paid 80% of the costs of the Calmare treatment! This is great news - part of the reason why this treatment isn't well-known is that it isn't covered by many insurance companies yet. Insurance companies won't pay for things out of the goodness of their hearts, but they might pay if they see it saves them money. Anyway, I hope they will start paying for more people to try this. Like most treatments, it won't work for everyone - but it sure worked for my daughter, and it's non-invasive and painless. I'm very grateful we tried it.
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Old 08-21-2013, 01:26 PM #5
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Update - my daughter has been in remission now for almost 2 months after her booster treatment, and this remission is going better - she's definitely getting stronger, although she's still very fragile. I sure hope we get at least 6 months this time!!!

It looks like I need a booster treatment though, too - I realized the other day that my pain levels from the fibromyalgia have come back to almost what they were before I got the treatments. We just switched insurance companies, though, so I need to see if this new company will cover the treatments, because I don't think we can afford them right now otherwise Hopefully my husband will get a good bonus soon, and I can get better again, too.
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Old 08-21-2013, 04:52 PM #6
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Quote:
Originally Posted by jasper27 View Post
I've seen a couple posts on here asking about Calmare so no intention to duplicate anything but wanted to see if anyone would post that's had the treatment themselves and had any "this is what it's like" or "here's what to expect" stories... how you liked the Doc? What city you did it in (and is there anything interesting to do there in the down time?)? ... then, the important part... did it work for you? or also want to hear if it didn't... thanks
I think this person would like an overview of what actually happens during the treatment..

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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Old 08-21-2013, 11:41 PM #7
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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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Old 08-22-2013, 12:21 PM #8
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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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Old 08-22-2013, 05:11 PM #9
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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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Old 09-10-2013, 11:52 PM #10
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Default I have had 15 treatments of Scrambler therapy

I only have about 6 hours with no pain from the RSD, sadly though it comes back and when I mean it comes back it goes right back up the pain scale. I was wondering if anyone out there is having the similar issue of not working has you hoped it would have. (This doctor that worker's comp is paying for, is not buying that I know the difference of the RSD pain and other pain. I worked in health care for over 8 years, I know this is the RSD pain. I worked on a broken foot for two whole months at the hospital, I know what pain is. I cannot find a job due to the fact that the medications cause bad side effects like becoming dizzy. Then I cannot wear shoes nor socks. I cannot stand or sit for a long time. Then in my arms, I have RSD from the finger up to back of my neck. He also complains that I need to focus on what I want to do, well when I get the resources on what I need to do, I will go back to school to learn to do something that will provide me a job. Sorry, I got off subject.)
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