Hi lit love,

There is not one shred of scientific evidence that SCS are safe and effective for CRPS. I have done extensive research with the two companies that my PM doc uses, Boston Scientific and St. Jude. Both companies used the same research study to gain FDA approval for their SCS. Not only did that study fail to demonstrate that SCS were safe and effective for CRPS, after weeks of written and verbal correspondence with Boston Scientific, thier technical department finally admitted that I was correct when I reviewed all of the research they "summarize" for physicians as well as their own physician's clinical manual which clearly indicates that the unit is safe and effective for failed back syndrome. When I asked why my pain management doctor suggested a SCS for me I was told, "each physician decided how to use our units."

It was amusing when the director of their technical department quoted studies that were outdated, lacking in solid research methodology, not longitudinal in nature, and in some cases outright misquoted the conclusions. Having a doctorate and a background in research methodology comes in handy every now and again!

Basically ditto for St. Jude. St. Jude was particularly defensive when I challenged their interpretation of specific studies they quoted. When I asked for a copy of their physician's clinical manual I was told that the manual is "proprietary material." St. Jude did however offer to send me more "current research". What I received, however, was not current research, but a brochure and DVD propaganda. I was invited to talk to a "mentor" who could explain the benefits of SCS. That aroused my curiosity so I called and asked for a "mentor" with a diagnosis of CRPS. The "mentor" who called me
claimed she was a volunteer (curiously the number on my caller ID was the St. Jude number) The "Mentor" immediately sang the praises of her SCS and told me my life would change and I might experience a remission. When I asked her if she had a diagnosis of CRPS she indicated that she was not permitted to discuss her diagnosis. When I asked her why she replied, "for legal reasons."

BTW Praeger is SCS happy. Just ask him what percentage of his revenue comes from SCS implantation. Praeger has a lit review on the RSDA website which is frightening. This lit review references studies that are not longitudinal, outdated, and some have flawed research methodology.

It is always interesting to ask a doctor how much revenue is generated by one implantation. The blood will quickly drain out of his or her face, followed by something like "that depends on how many leads."

I think I remember one of your prior posts suggesting that you physician had addressed your concerns about SCS. I am curious to know what he said to ease your fears. I have found no research to support any remission from CRPS as a result of SCS.

If your doctor refers you to any clinical trials or studies demonstrating the long term benefits of SCS feel free to let me know and I will be glad to give you my take on the research methodology.

BTW my pm doc no longer does SCS for CRPS. When I asked him why he would even consider it he indicated that the companies pushed them for CRPS. I believe him because when I interviewed both company sales reps I was encouraged to have the implantation and assured that SCS are safe effective for CRPS.

Since I have an appointment with Dr. S coming up next summer I contacted his office inquiring if I should have a SCS implanted. I was cautioned against the procedure for the following reasons.
1) Risk of new source of neuropathic pain at the incision sites
2) Risk from surgical revisions which are common
3) High failure rate necessitating removal thus posing more risk of CRPS spread
4) Risk of full body spread.

When Mike and I pm each other regarding SCS my favorite comment to him is "lambs to the slaughter."

Please, please do your homework before considering this. It is, at best, Russian Roulette.

Have you considered non invasive treatments that address cortical reorganization such as tCDS? (No side effects, you do not build up a tolerance build up a tolerance to the treatment, it is painless and very effective for neuropathic pain)

Wish I could provide you with more tonight but I am not in good shape this weekend.

Please, Please Lit Love do your homework before considering this. I am so frustrated because I have sent private messages to several CRPS folks who politely thanked me but assured me that their doctors had put them at ease. Sadly, after implantation their conditions worsened. Please see prior posts of SCS failures. Might I suggest that you read ellijennings experience. She has shared her SCS experience on her blog which I believe is rsdburningsacrifice.com

Please take care and sending gentle many gentle hugs your way!!!!!!