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 01-03-2014, 04:34 PM #31
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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.
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Old 09-10-2014, 06:00 PM #32
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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!
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Old 09-11-2014, 05:59 AM #33
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Quote:
Originally Posted by Neurochic View Post
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.

snip

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 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.

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Old 09-12-2014, 01:00 AM #34
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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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Old 09-12-2014, 01:43 AM #35
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Originally Posted by eevo61 View Post
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 agree, and people's bodies react differently to different treatments.

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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
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.

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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 ?
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.

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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'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.

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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.
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.

Quote:
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.:group hug:
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.

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Gentle loving hugs with caring love Jesika .
And to you, too Thank you for your support! and best wishes and prayers for you to find treatments that work well for you!
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Old 09-13-2014, 03:25 AM #36
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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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Old 01-13-2015, 08:32 PM #37
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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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Old 03-25-2015, 10:53 PM #38
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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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Old 03-26-2015, 07:46 PM #39
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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.
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Old 03-26-2015, 09:53 PM #40
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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!

Last edited by SloRian; 03-26-2015 at 10:12 PM.
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