Wow Jim, I never considered the DEA angle!

You have to be careful using the Spinal Cord Stimulator trial as a means to evaluate its effectiveness for CRPS. Thousands of CRPS patients have undergone a "successful trial" only to discover that upon permanent installation the unit either stops working very soon after installation or within months, causes painful stimulation that cannot be ameliorated, or ignites a new spread with a prime culprit being the incision sites (which become a new source of neuropathic pain.) This is frequently accompanied by lead migration and sufferers are many times convinced to undergo yet another surgery, (commonly referred to as "a revision surgery") which in a majority of cases does not help or worsens the CRPS. Any CRPS patient considering implantation should study up on the sanitized term "revision surgery." This surgery is even more painful than the original implantation, opening up scar area that has already been opened up twice, once for the trial and once for the installation. Hacking through that much scar tissue is not something to be taken lightly. I suggest reviewing copies of the physician's clinical manuals prepared by each SCS company, for a unsanitized version of this procedure.

Many CRPS folks are walking around with a failed SCS because they do not want to risk yet another maiming surgery to remove it.

Sadly the truth for many CRPS folks when their SCS ultimately fail is the perplexed comments from the doctor who can't understand why. Then it is basically, "sorry about your luck there is nothing more I can do for you."

There is not one shred of scientific evidence that Spinal Cord Stimulators are effective for CRPS beyond a relatively short period of time. The scientific evidence suggests that Spinal cord stimulators do nothing to slow the progression of the disease. Failed Spinal Cord Stimulators can negate the effects of future Ketamine infusions. Please see Elijennings journey as an example of this common occurence (RSDburningsacrifice).

I agree with you Jim about the financial incentive for doctors to blindly push installation of SCS for CRPS patients. When it comes to CRPS and Spinal Cord Stimulators, the scale is tipped in favor of the procedure being more beneficial to the doctors, who rake it in with trials, installations, revision surgeries, maintenance and the companies who push them (even though they know SCS have a high rate of failure among CRPS patients) than the patients who seek Spinal Cord Stimulator implantation in desperation.

I have become so outspoken because of the many CRPS patients with whom I have sounded the CRPS/Spinal Cord Stimulator alarm, only to be left following along in their route of post implantation misery and regret.

It is so hard to watch a child suffer. This procedure, however, is so potentially dangerous.

My suggestion to anyone considering this procedure for a minor would be to wait until the child is no longer a minor and can evaluate the risks and make the decision themselves. I can't imagine anything worse than suffering feelings of guilt for a decision that cannot be reversed, and a son or daughter who suffers life long permanent disability after a procedure documented to have little benefit and high risk.

I agree. The truth seems to be no real evidence SCS is truly beneficial to those with RSD, none! Short term relief for some, that is about it. Then it becomes one big headache. As far as the DEA, it seems they are deeply intrenched in doctor's decisions about your treatment if it involves narcotics. Especially those on long term care.

The reality is people that experience significant relief from the SCS return to their lives, and those that have a bad experience are going to be more vocal. Does the idea of spread from a SCS scare me? Yes. Very much so. But, I thought one of the previous arguments on the board about the efficacy of the SCS was that the data was untrustworthy because the trials were done with young adults and therefore their success rate won't be as high in adults.

Many docs, especially pain clinic docs, have an incentive to recommend certain treatments and medications due to their fear of Multiple law enforcement agencies.

For the OP--the more aggressive the treatment and the sooner you can get it for your daughter, the better. She has a good chance to go into remission with one of the inpatient children's programs. It might take more than round.

I had lidocaine infusion but not ketamine. I did not get any benefit from the lidocaine. After my pain was high but it could of been just a flare. I did not have the side effects stated. the nurse was there the whole time asking me though if I felt swelling or not ok.
I do agree from all the doctors I saw that starting with least invasive to more if it does not work is the way to go. I had in the start docs who wanted to do big procedures without trying less and I am glad I did not because some lesser ones sent me backwards as what was supposed to settle the pain increased mine.
I hope you can find what works for your daughter

Accox4, have you checked into Calmare?
 

Dear Accox4

I was looking for something else and found your story about your daughter by accident, but I have learned that there are really no coincidences.
I believe there is a reason I accidentally came across this. Our son has had RSD for over six years, but he's been in remission from pain since June 2010. Well, actually he's been in and out of pain remission because he doesn't get that he's different from other kids and he does things like getting on a trampoline and then gets re-injured. Then he gets a booster Calmare treatment, and thankfully responds well to it and goes into remission again. Please, please check out this non-invasive, non-painful treatment. We went to Dr. D'Amato in Providence, RI, and he is the best!

Good luck and God bless! I hope you see this! Blessings, Kim