*edit*

I'm S's Aunt's sister, and it's my daughter that she is talking about. The three of us went together to see Dr. Cooney in New Jersey. I'm so grateful that my sister did all that research and found this particular doctor, because the more I learn about it, the more I think that it is HIGHLY operator-dependent because it is relatively new. What we really liked about this doctor was that he, personally, did every treatment. For each 35-minute treatment, he was in the room probably at least 80% of the time, and often more. He would do adjustments on the fly as new sensations came up. Also, he didn't just take a history and leave it at that - he kept looking at all different angles as the treatment went on, and adjusting the position of the electrode pads accordingly. I think it's really critical that the doctor stays in the room with the patient for all the treatment sessions, because they're the nerve expert, and they will notice things that a tech just won't.

Anyway, as my sister said, we had really great results with the treatment. The RSD/CRPS pain is gone, but she is still very fatigued and weak and has muscle/tendon pain from not having walked for 9 months outside of a surgery boot. We've been home for just over a week now, and she is improving daily. This week will be the most that she's been able to attend school all year.

I'm going to keep working on my insurance company to cover this treatment, because then it will become more common and doctors will be able to share with each other more about what works and what doesn't work.

is there any way my daughter can talk with you about this treatment. She has had CRPS for nearly 2.5 years but it is still isolated to her knee. She went into remission for about 16 days following a series of injections but it just returned, worse than ever. thank you

This seems to be the one treatment that new posters come and create new accounts for, sing the praises about, and then disappear forever after...

There have been accounts that some of the hype has been generated by employees of a few docs that provide the treatment. Considering it'll cost several thousand dollars, anyone considering it should spend lots of time googling others feedback.

Hi Lit Love,

All I can say is that for us, it was wonderful. It was so wonderful that I swore that I would dedicate an hour every week to put the word out on message boards, because I lived through this horrible thing with my daughter, and my sister only found out about it by accident after probably several hundreds of hours of internet research (she was scouring message boards in addition to research papers, and came across a sentence asking if anyone had heard of the Calmare treatment). It really concerned me that it was so hard for her (and she's an excellent researcher!) to find out about this treatment - if she had decided to go to bed a little earlier that night, she might not have stumbled across that one line, and she wouldn't have researched it and found out that major players like Mayo are working with it, and we wouldn't have gone to New Jersey and had such fabulous results, and my daughter would have been living with a spinal stimulator trial setup right now. Instead, my daughter is walking. WALKING! She isn't pain-free, because she's so messed up from 9 months in a surgery boot, but the RSD pain component is gone, and she is improving daily.

I joined 2 boards, and have since found out that there have been some suspect posts about Calmare. One admin (not here) was pretty snippy about it. I think any kind of deception is abhorrent, and it's a real shame that (apparently) there was some deception going on with this. However, you guys don't know me, and for all you know I could be deceiving, too. All I can do is continue to post here and share our lives with you all, since we all have this awful disease in common and can be a help and a comfort to one another, and hope that you can see that this is not a deception.

There will be three (I think) major studies coming out in the next couple of months, so hopefully insurances will start covering it, especially since it's a lot cheaper than any other treatment. I'm hoping that it will be the new first-line defense against RSD, because it's certainly less invasive and painful than any other treatment.

And frankly, possibly another reason that people post and then disappear is that it works - they feel that they don't have it anymore, so they don't need to post. God willing, my daughter will stay in remission long-term. When we first got home, I almost felt guilty posting with people with active RSD, when my daughter was doing so well. But then I realized that we just never know, and she still has so many side-effects from the treatments and the disease, so it would be OK to join and post and share with others about the many side-issues that we still face. And I can share about her experience with the spinal blocks and the Bier blocks and the meds and pt and all sorts of things, and also learn from other people (the hyperbaric oxygen whatever thing was new to me - I hope my daughter doesn't need it, but she might - who knows?)

So all I can do is post and share my personal experience and answer questions and read about other people's experiences and give and receive hugs and help, and hope that people believe me. This is not a disease that gets "cured" - the best case is that it goes into life-long remission - so I will continue to post, at least until my daughter is in remission so long that it really isn't helpful anymore and Calmare gets more well-known than it is now.

I'd love to talk to you and give you any information I have and answer questions about our personal experience with it - do you want to try talking here on this thread a bit first?

Also you can talk to Dr. Cooney in New Jersey personally - we can't share links, but a Google search will get you the info. We found that it's strongly operator-dependent, and as we shared, this doctor stays with you for every treatment and is always twiddling with the settings and placements, instead of just setting it up once and then handing it to a tech - I think that's why he gets such good results. If you decide to go, his staff can help you with housing arrangements if you need it. They used to just have a nearby hotel they recommended that gave his patients a good rate, but my sister has some medical conditions where she has to have a specialized diet, and she found a long-term residence hotel with full kitchen facilities (full-size fridge, microwave, stove, dishwasher, plates and utensils) which we liked a lot. We talked to the manager there and explained the situation and said we could set up a win-win situation between them and Dr. Cooney's office, because the patients would be getting a discount, and the hotel would be getting 2-week stays from people that are going to be getting medical treatment and would be nice and quiet because it makes you tired! Both sides thought it was a good idea, so Dr. Cooney's staff can give you the name of that hotel, too.

God willing you will be as helped as we were!!!! If you go, whichever way it goes, please be sure to share with us

Hi Lit Love,

I have to say that I agree with my sister's thought about why people post about Calmare and then disappear (pls see end of post). I was Soooo excited when my niece's crps pain went away after 9 months of living with it. Since the treatment was non-invasive, and didn't have side-effects (that we have heard of), I was all charged up and on a mission to make sure that every crps/rsd sufferer knew about it so that they could look into it and decide if they wanted to try it!! It definitely is expensive, (around a few thousand dollars) but we were told that you can usually tell if it might be helpful in one or two treatments (out of the usual ten), which also seemed like a plus.

So after charging in, and being extremely excited about it, I learned that many people are suspicious because some unethical people lied and posed as people who had been helped. That makes me so sad, because when people (like me) are happily sharing something that was wonderful for us and others, now readers have to try and figure out if we are lying or telling the truth :-(

I know that this is not a "cure", and that it does not help everyone (as other posters have been kind enough to share their experience). However, it does help many people, and it deserves to become well enough known so that each person can look into it for themselves and make their own decision. After haunting crps/rsd websites, boards and you tubes for hundreds of hours, I only saw Calmare mentioned a few times. I finally decided to investigate it, though.

As for posting and then disappearing, it makes total sense to me. If I was living in pain, and then had a treatment that made the pain go away, I would want to share that happy and potentially helpful news with others in my situation, and then move on. I would not want to keep hearing about things that reminded me of all that pain, so I probably would "disappear" as I worked at getting on with my new life. I can see how that would not lend credence to the good reports, but I can also totally understand why people report and disappear. My niece doesn't even like talking about it at all, which is why her mom and I are the ones posting.

Anyway, I just wanted to have you consider one possibility for the "join, sing praises about and disappear" thing. In my naivety, I was planning on doing just that for as many sites as I could find. I didn't realize the complexity of the situation, and how that might make the "praises" seem faked. Frankly, in the small bits that I found posted about Calmare in various sites, it always seemed that the posters were almost afraid to say much about it, which made me think that it hadn't really been a big change for them. I can see now that they were being careful, so that people would be able to take them seriously, instead of being exuberant and therefore assumed to be lying for the company....... Sigh....

So, thank you for bring up the issue, Lit Love, and I hope that I may have shed some light on a explanation for something that may have seemed suspicious to you and others.

I'm sorry this is an awfully hard SELL. Now there are two users needed for this?

How old is the daughter/niece?

http://neurotalk.psychcentral.com/sh...hlight=Calmare

Hi everyone,
I am locking this thread now before it turns into a dispute. We can never really be 100% sure that things are exactly as they are represented on the Internet, but I really don't want past experience with some who may have been deceptive to result in everyone who speaks of this treatment being treated suspiciously.

I think it may be wise to simply say that members should do their own research and decide for themselves if a treatment is worth pursuing, always of course after consultation with their own physicians.

One thing is sure...different people react differently to different treatments...what works wonderfully for some may have adverse or zero results for others and vv.
We are always thankful to hear of someone finding relief from pain so that is a good thing.