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 :)

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.

Calmere
 

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

Debbie

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.

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.

I think this person would like an overview of what actually happens during the treatment..

Do they stick e stim pads on you? :confused:
Where on the body?
Or what is actually done?
How long does a session take etc?

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.

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.

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.

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.)

I've also read that they are just glorified Tens machines. Had one of those didn't work

We went through that this last time my daughter came out of remission. We tried a provider closer to home, but you could tell that they just weren't as experienced, plus for some reason they changed the pads to a normal TENS pad, and although she "zeroed out" during treatment, the pain came back about 6 hours later, like you, and after 4 treatments, the pain came back completely over the weekend. The next week, we went back to the provider that we went to last time, and it worked really well, and she's back in remission.

I'll give some more details in my next post, but I wanted to reply specifically to your post since we went through what you were asking about.

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.

Please keep posting your story, thoughts and experience with this and any other therapy you may try. Yes, many people make things into more of an argument about what works and what doesn't, what is right and what is wrong but truth be told there is NO TREATMENT for RSD/CRPS/CRPS II/CAUSALGIA or any other name it falls under. The goals of treatment are different for everyone and if there was anything that "treated" everyone with positive results then there would essentially be a cure.. until that time, I personally would like to see what everyone has to say controversial or not that way - I can make my own decision about what options to pursue that will help me reach my goals.

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!!

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.

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 :eek: 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!

So here's the details about the Calmare treatment that did NOT work well for my daughter:

The one in New Jersey worked really, really well. We went there, all the way across the country, because that dr. was the one that had the most experience with RSD. That treatment put my daughter in remission for 3 months. She was not very strong, but ALL of the RSD symptoms went away, and she went completely off of Vicodin (she had to go down slowly and under dr's care).

When she started coming out of remission, we decided to try the clinic here in Arizona that had the most experience. If it didn't work, we would go back to NJ. Well, thank God it worked really well, and she entered her second remission. This remission was a lot stronger, and she even went surfing once! (not in Arizona :D it was when we visited my family in California). This remission lasted 3 months.

When she started coming out, we decided to try the other clinic in Arizona that didn't have as much experience, but was a lot closer (20 minutes away, instead of an hour, which is a big difference because I have trouble driving and she's tired after the treatment). This one started off differently right off the bat - for one thing, they used the type of pad that was used when we got TENS treatments at PT. With the normal pads, you can overlap them and put the signal right where you want it, but with these TENS pads, you couldn't overlap them, so they ended up in a different pattern on her back (I didn't realize this, or I would have said something sooner). I don't know WHY they didn't see this as a problem! I mean, the whole point is to get to certain specific points on the spine that are typically close, and these TENS pads won't let you do that!

Anyway, when they turned on the machine, instead of feeling really good, it hurt her - it felt like giant bee stings on her back, plus it itched badly. She did finally "zero out" during treatment, but the pain came back sooner, and the biggest thing is that instead of being at a zero after 4 treatments, she was still at a 5 - and she came in at a 4! IOW, she ended up getting a little worse. Finally we tried switching to the normal Calmare pads, but it was just too late and it just wasn't working, so we just decided to write it off and go back to the other place.

We went back to the other place the next week, where they followed the standard Calmare protocol, and it worked great. She is now in remission again after 4 treatments, and is getting stronger and stronger and starting to catch up on her schoolwork.

So anyway, I wanted to share that with you all (thanks for asking for my experiences, zookester :) ) because I'm interested in sharing everything with people, whether it's good or bad, so that they have as much info as possible to make their own decisions.

I just traveled from CA to RI for Calmar Tx with my 15 yo daughter who has had severe CRPS for 3 years. It worked! If you log on to the website or you tube you can see exactly what they do. They use the electrodes and put them on you, based on your affected pain area....check it out. CALMARE it awesome!!!
;):D

CALMARE is not by any means TENS.
 

I just want to make sure that everyone is aware that the Calmare therapy is nothing like TENS, it does not operate like the TENS, it does not target the same nerve fibers as the TENS.

I just wanted to clarify.

Here's to painfree days!

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.

Momofrsd, I'm SO glad to hear that your daughter responded well to the tx! Please keep us informed of any updates. My daughter's first remission took 15 treatments and lasted 3 months, then she needed 4 booster treatments and the second remission lasted another 3 months (I think it could have been longer, but we had a series of very physical/emotional stressful events and I think it knocked her out of the remission). We're several weeks into her third remission. I'd be interested to hear how your daughter gets on :) I hope it lasts really long!

advice on calmare
 

I would really love your advice. My 17 year old daughter has had RND/ RSD /CRPS ( the beast by many names, I say) for 5 years now. We have been to about 40 Drs/therapists including 3 weeks of treatment in Pennsylvania - but have had no pain relief. I am desperate to allow her to finish her senior year and go on with her life and her HUGE dreams - she has already battled through so much and lost so much - we CANT give up now!
I am just now hearing of Calmare and your results are giving us hope again despite the lack of clinical trials.

I really want to try this - my question is this: There is a certified clinic here in MT - about 8 hrs away ( A miracle - up til now I hadn't heard of another living soul in MT with this or anyone who knew ANYTHING about it) -- but there are not even anecdotal reports of success there which I have found ( and actually one really negative report). The NJ clinic seems to have at least anecdotal successes -- and many!
Would you try here in MT first , or seek elsewhere? There is a clinic in Utah with success stories... and of course there is NJ....
What would you do? Please help- totally at the end our rope

PS -- FYI her pain is not localized

Hello, mtgoats!

I'm so sorry to hear about your daughter :( There seems to be a trend with teenage girls, like yours and mine. It's SO hard to watch them in such pain :(

I can't give medical advice because I'm not a doctor, but I can certainly share my experience and what I think I would do in your situation. I took a quick look at the Calmare site, but I don't see the "Calmare certified" mark by the Montana site, so I'm not sure which one you're talking about. Personally, if at all possible, I would recommend going to NJ. The dr and staff are wonderful, and they are specializing in RSD/CRPS. The stakes are so high that we decided to do whatever had to be done to get our daughter there, because our research showed that he had by far the most experience with RSD, and hers had spread body-wide. He won't charge you for the first few treatments if it doesn't work, either.

My daughter has had to have 2 booster treatments. There are 2 places in AZ, and first we tried the one that was farther away because it was certified, and it worked really well. The next time she came out of remission, we decided to try the closer one, which was NOT certified, and it actually made her worse, so we had to go back to the other one.

If you decide to go to NJ, they can tell you about which hotels to stay at (we helped negotiate a good rate at one hotel that has a kitchen area, which was great for saving money on food).

Best wishes and prayers for your daughter, and please let us know whatever you decide to do. It's helpful to share information with others. And please feel free to join in the other threads, because it's really helpful to talk to people that understand! :grouphug: No treatment works for everyone, but it sure worked for us, and I've heard it works for many.

I'm so glad it worked for your daughter. I'm sure it's awful to watch your child go through this terrible pain. I would assume it wouldn't work on me due to mine being full body. Although I've considered it, but now adding more complications. It might be worth a try. Nothing else is.

I wish y'all continued success!

TK

thanks
 

:confused: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:confused:

tens machine
 

I have tried the tens machine .I cannot use it.it makes it worse.so be careful:(

Thank you, TK! Yes, it's pretty awful watching a young girl dealing with this :( But full-body doesn't matter - my daughter's was full-body, too. They start at the point of the initial injury, though. They have also dealt with people that have had it for years.

Personally, I think it's worth a try, especially now that many places don't charge for the first few treatments if it doesn't work. I'd recommend only going to the certified ones, though - we had a bad experience going to one that wasn't certified but was a lot closer. It just wasn't the same.

I think I described it earlier in this thread - go back and take a look :) But if you have more questions, I'd be glad to share our experience.

We had tried a tens machine before, too. In our experience, it's very different in several significant ways.

An update for those that said they are interested :)

Christmas was special this year, because if we made it to Christmas without my daughter coming out of remission, it would be her longest remission (she's in her 3rd remission) ...

Anndddd ....

She made it - and is going strong!!!!

I thought she was going to lose it a few weeks ago, but she turned a corner, and is now in her longest remission and going very strong!

Wonderful news! Thank you for sharing your experiences. Your daughter is blessed to have such a strong parent by her side!

Thank you! Yes, I've done a LOT for her - unfortunately, I've let my own health issues slide. I'm now trying to catch up and deal with them and get healthier, which will be good for everyone.

Another good update - for the first time since she came down with RSD, this one spot on her shin where she got hit with a softball really hard and has always had this nerve buzzing thing has now gone away completely! That has NEVER happened before in any of the remissions. I'm praying that that signals a very long remission.

Hi guys! I'm back with an update. The ironic thing is that in my last post (see above) I mentioned letting my own health issues slide and that I was trying to catch up with things. Well, I started catching up - got a pap and a mammogram in January - then in February, my daughter started having some severe TMJ issues. Finally got that cleared up (luckily it was muscular, so after a lot of PT and relaxants she got better) then back on track catching up with my endocrinologist, who found some suspicious symptoms and got me into an OB/GYN 2 days later, and she found ... ovarian cancer. She got me into a gynocologic oncologist the next day (I've never seen doctors work so fast!) who confirmed it and scheduled surgery for 3 days later because the tumor was so large (one of the symptoms was that my waistline had been increasing in size really fast, and finally I was unable to bend over to tie my shoes).

The good news is that even though the tumor was the size of a 4-month pregnancy, it was still intact, and they evaluated me at level 1C, which has about a 90% survival rate. I still needed to go thru chemo, though, and that's been a rough road. I had to get hospitalized twice. Anyway, my last chemo treatment is next week, and I'm feeling better than I have in 5 months and was working on my laptop and saw the link to this site and thought I'd come back and visit and give a Calmare update for those that had wanted the info.

I think my daughter's previous remission lasted a bit longer than 6 months but I'm not sure because I don't have last year's calendar with me. She came out of remission right before the doctors found my tumor, and she got some treatments - I think it was about 5 treatments (it's usually 10 treatments the first time, then it's typically fewer when you're treating coming out of remission). She's now at 5 months in remission and going very strong - the strongest remission yet. That buzzy spot on her left shin has completely gone away again.

Anyway, that's my update, and it's been nice to browse around here again and see some familiar faces. Best wishes for everyone to find the treatment/treatments that work for them!

I have two IF4000 interferential tens machines that I've used for back pain for years. Can you tell me exactly which ones they use?

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

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.:grouphug:
Gentle loving hugs with caring love Jesika .:grouphug:

I agree, and people's bodies react differently to different treatments.

I don't understand why this particular treatment is so controversial, but it is. All I know is my personal experience, which was very positive, so I wanted to put it out there so others can read it and make up their own minds. I know that some people have had a negative experience with it, and for some people, it hasn't done anything either positive or negative. But for a disease as awful as RSD, I think it's good to research many things.

Yes, she has had TENS machine treatments, and it's different from Calmare in several very significant ways. The machine is different (different number of control knobs, different number of pads that stick on your skin, different kind of pads, VERY different placement of pads), and it feels different feeling during treatment, and the treatment protocol is different, to name a few. It's similar in that it's an electronic treatment.

I'm so sorry, I don't remember. I'll try to call her doctor and get back to you, but I'm still pretty weak from chemo so I can't promise anything. I know that you can look up Calmare treatment places on the internet and call yourself and find out. We've been to three different Calmare treatment places so far (look back a page or so for a longer post of mine that gives a lot more details) and I like the one in New Jersey best so far, so I'd say maybe give them a call if you'd like.

We were trying to decide between ketamine and a SCS when we came across a mention of Calmare on the internet, and my sister did some research and we decided to give it a try first because it was less invasive. The treatments that she had before were 4 or so lumbar blocks and then 5 or so Bier blocks. They all worked for a little bit then wore off.

That's so true - thanks for the good reminder and the hugs! After all we went through with RSD, getting a cancer diagnosis was quite a shock. They caught it while the tumor was still intact, though, so my prognosis is good. I'm so glad that I finally pushed myself to catch up taking care of myself! The thought of my kids being without their mom is awful - I'm so close to my mom, even now. She's been a huge support to me during these difficult times, and I'll fight with everything I have to be there for my kids.

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.

And to you, too :grouphug: Thank you for your support! and best wishes and prayers for you to find treatments that work well for you!

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 .:grouphug:
Gentle loving and caring hugs ,Jesika .:grouphug:
Is a bless have each other to support and comfort yourselves In this difficult moments but sure ,you are both bless .

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.

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!! :grouphug: I'll continue posting updates whenever I get more news.

So glad to hear your daughter did well with Calamare. I have seen Dr. D'Amato in RI. It was very helpful for me. Not a complete remission, but my quality of life has greatly improved.

As far as insurance coverage, just keep trying. I am on workman's comp. My insurance had never payed for Calamare before. With the help of a great lawyer, pain specialist, and Dr. D'Amato I was eventually able to get it fully covered (including paying for my hotel stay while I was there). I even spoke to the CEO of the insurance company on several occasions. Once it was finally approved the CEO sent five senior insurance executives to visit the facility and speak to me during a treatment. Someone has to be the first to get a new treatment covered. I'm glad I was able to pave the way for someone else.

I'm very glad to hear that you had a significant improvement!! and also that the insurance company looked into the treatment with such senior employees. I'm SO glad to hear of anyone with RSD having an improvement with any treatment!

That's so encouraging to hear of your success with the insurance company. I picked up the papers I needed to start the claim today, and am going to start the fight!

Some more info I found out today - I checked back on the clinical trials webpage, and three trials have now been completed. Most of them are for chemo-induced peripheral neuropathy (which I have now after going thru my cancer treatments :( ) but there is also one for back pain and one for shingles. It's really encouraging to see the studies starting to branch out into different areas. That will help with insurance company battles, too. You can look at the studies by going to clinicaltrials.gov and searching for "scrambler".

The back pain trial had great results. It was a double blind study. The Calmare patients had an approximately 40% reduction in pain, while the sham treatment patients didn't have any improvement. That's pretty significant! The sample size was small, but at least we're making some progress in getting studies done, and it should keep building. I think it's a great idea to do testing for shingles treatment - I hope that works!

Two chemo-induced peripheral neuropathy studies had results, too, but I don't understand how to read the results. I have a degree in computers/math, not medicine, and I just don't understand the format they used to show the results. The back pain study was really clear, but these studies just didn't give enough info for me to make sense of the results. I think I'll call the Mayo clinic (one of the sponsors) to see if they can explain it to me, or maybe someone here can read the studies and explain it to us.

When I get some time off from my daughter's medical issues, I think I'll try Calmare for my chemo-induced peripheral neuropathy, especially if I succeed in getting Calmare covered for my daughter.

No treatment works for everyone, but this one sure worked well for my daughter, and I'm glad to hear it helped you!