[krank]

I know it's been awhile and I apologize to this amazing group but Krank has been through some life changing events in the last year and a half so I would hope you would cut the Krankster some slack...I think the last time I was on was in December of 2011? Has it been that long oh my G. Well I was off to walk my beautiful daughter down the sandy aisle in Key West when we flipped our SUV 4 times on the way to the wedding..Kranky didn't come out so well..I took one huge one for the fam. I ended up breaking my neck into so many pieces and dragged my head down the freeway at 70 mph, leaving a nice little 5 in round scalp job down to the bone and ended up in a coma for about a week...Needless to say we didn't make it to the wedding. The rest of the fam did ok except for the PTSD symptoms everyone is going through. Anyway...I ended up with a smash neck and wide open scalp, a TBI and now..PNES..I feel like the alphabet man...So it's been one surgery after another and just mending up and slowly getting rid of contraptions that help in aiding skin growth on my scalp. As far as the RSD it has actually stayed put throughout this ordeal...Still in both legs but hasn't spread any further thank God. I have been looking into this Calmare treatment and I'm wondering what the real statistics are on this new procedure..I would like real life, this happened to me, type statistics. All these other standard statistics from pain management or the hospitals can be skewed so thats why I am coming here, back home to the place where I've always received the most honest and up to date information..Thanks....krank

[Ccm47]

Wow, you've been through a lot. Welcome back. I'm new to the forum so I don't know you from before, and can't help you with your question, but I guess I'm glad to hear your RSD didn't spread despite all that you went through. Given what happen to you can't say you we're lucky but at least it is something.

[alt1268]

Krank,

Welcome back. You certainly have been through a lot and it sounds so very painful. Sorry you missed the wedding.

As far as calmare therapy, I do know there is a thread about it so do a search.

Good luck and keep us posted.

[finz]

The words "Key West" jumped out at me and I was jealous until I read the rest ! Holy Cow !

Welcome back.

[oscarlonzo]

Originally Posted by krank

Is Calmare treatment and I'm wondering what the real statistics are on this new procedure..I would like real life, this happened to me, type statistics. ...Thanks....krank

Dr. Campbell presented an abstract at the ASCO meeting of a blinded, randomized, and controlled study comparing the calmare (aka MC-5A) with a "sham" device.

He compared seven experimental patients with seven sham patients -- all suffering from chemotherapy induced neuropathic pain.

The result was he found the calmare had essentially zero effect on the pain and its effect could not be distinguished from the effect of a "nontherapeutic" sham.

The abstract is available online as well as in the "Journal of Clinical Oncology 31 2013(suppl: abstr 9635)."

[Chemar]

I just want to mention that citing a study on chemotherapy induced neuropathic pain is not exactly in the same category as the pain from RSD, which is what I think the OP was specifically asking about related to this treatment.

Hopefully this thread will stay on topic as per the OP's first post.

[SloRian]

Hello krank!

Wow, you certainly have an excuse to be kranky! That was some accident! And on the way to your daughter’s wedding?! Well, it sounds like you’re slowly recovering - I hope things are going better.

I would be glad to share my personal experience with you. I know what you mean about personal experience vs. just statistics from people without the condition. I think both are valuable and good to hear.

I actually have 2 experiences to share - mine and my daughter’s. My daughter’s is the one you would be more interested in, though, so I’ll start with that.

My 16-year-old daughter developed RSD a year ago after a stress fracture in her left foot. Since she was young and we caught it early, we moved pretty aggressively into treatments to try to get it into remission, or at least keep it from spreading. She went through 3 spinal blocks and 5 Bier blocks, but it kept coming back and was spreading - it was all over her left side and starting on the right. It is so horrible to watch your young child suffer through this awful disease and go from active and vibrant to unable to even go to school more than half of the time, let alone do track or go out with friends We were starting to schedule a SCS when my sister, who had been doing research for us, told us that she had found a procedure called Calmare, and that prestigious medical institutions like the Mayo Clinic and Walter Reed Military Medical Center were trying it out. We decided to give it a try, and decided that the doctor with the most experience was in New Jersey, so we flew there for a last-ditch shot at avoiding a SCS. We didn’t think it would work; it sounded too good to be true.

Well, it DID work - it worked really, really well, and she is in remission! I can’t even describe how happy I was to see her pain-free for several hours after the first treatment, and to see the pain-free periods grow longer and longer after each treatment, and the returning pain get less and less. After about the 4th treatment, we were walking down the hallway in our hotel, and she was so happy that she did a cartwheel down the hall! I was thrilled to see that, but lectured her to not do it again because you DO have to be careful at first to not re-injure yourself. Ironically, she managed to do it anyway - we were playing a fierce game of tabletop pingpong in our hotel room and she fell over trying to reach the ball and fell on a heavy bowl, bruising her leg in two places. We ended up having to stay over for an extra 3 treatments, because it brought the pain level back up a bit, but we left NJ with a pain level of 0 (she came in with a pain level of 8).

It’s been over two months now, and she is still in remission, and she took her last dose of Vicodin 3 days ago - she is now completely drug-free. After the first week of treatment, she cut down her drug use by half just naturally and on her own - she just didn’t need them as much because the pain was so much less. Since we got home, she worked off slowly (as her pain doc advised) and is now completely off drugs.

We may need to go back for “boosters” - that’s typical - but you get your booster when the pain is just starting up, so you only need a few treatments to get it back to 0.

As far as me - my RSD has been in remission for years (it also started in the left foot, but went into spontaneous remission when I tore my right shoulder up) but I have fibromyalgia. I thought that I might as well give it a try, since I was going to be there anyway. I ended up with about a 40% reduction in my pain, which I’ve had for over 30 years. I’ve maintained that reduction now for over 2 months, and I’ve also gone down on my drug use.

I know the treatment doesn’t work for everyone - nothing does - but it sure worked for my daughter and for me. I’m glad that it works better for RSD than for fibro, because RSD is such a horrible thing and takes such a toll on people. Fibro stinks, but it’s nothing compared to RSD.

Anyway, let me know if you have any more questions that I can answer about my experience, and I hope you continue to get better!

[SloRian]

I forgot to say that the treatment doesn't hurt, and there are no needles!! You just feel a little buzzy/shocky feeling. Also, at least two of the centers (NJ and Mesa, AZ) won't charge at all for the first couple of treatments if it doesn't work, so you don't lose anything but time if you decide to try it.