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 10-10-2013, 10:59 PM #21
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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!
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Old 11-14-2013, 11:39 PM #22
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Default 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
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Old 11-16-2013, 01:57 AM #23
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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! No treatment works for everyone, but it sure worked for us, and I've heard it works for many.
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Old 11-17-2013, 12:13 PM #24
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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
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Old 11-17-2013, 09:31 PM #25
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Quote:
Originally Posted by Jo*mar View Post
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?
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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Old 11-17-2013, 09:38 PM #26
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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.

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 tried the tens machine .I cannot use it.it makes it worse.so be careful
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Old 11-18-2013, 06:30 AM #27
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Quote:
Originally Posted by tkayewade View Post
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
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.
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Old 11-18-2013, 06:32 AM #28
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Quote:
Originally Posted by moosey2me View Post


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
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.

Quote:
I have tried the tens machine .I cannot use it.it makes it worse.so be careful
We had tried a tens machine before, too. In our experience, it's very different in several significant ways.
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Old 12-31-2013, 12:09 AM #29
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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!
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Old 12-31-2013, 12:40 AM #30
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Wonderful news! Thank you for sharing your experiences. Your daughter is blessed to have such a strong parent by her side!
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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