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Old 05-31-2011, 06:09 AM
ballerina ballerina is offline
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Join Date: Feb 2011
Posts: 393
10 yr Member
ballerina ballerina is offline
Member
 
Join Date: Feb 2011
Posts: 393
10 yr Member
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Quote:
Originally Posted by Rachel4444 View Post
Hi, I am new to the forum and was wondering if there was anyone who could advise me? I am due to have a trial spinal cord stimulator this summer. I have had nerve damage and CRPS in my left foot for eighteen years now and have tried numerous treatments but to no avail. I'm currently on a mixture of morphine, ketamine and zopiclone to name a few!
I was just wondering if anyone has had the trial or even the full operation and could tell me how they found it, did it work? What does it feel like? I would be really grateful if anyone could help
Thanks, Rachel
Hi Rachel,

In the past there was a thoroughly researched post regarding the effectiveness of spinal cord stimulators and CRPS from a lang standing NT member (fmichael). When I saw your post I tried for two hours last night to find it without success.

I did, however, come across an abundance of posts regarding the horror stories of CRPS spreads caused by implantation of SCS, failure of leads and batteries, migrations of leads and batteries, new sources of CRPS at the incision site, and spread of CRPS due to failed SCS.

The most important section of fmichale's post was that in addition to the above mentioned issues, there was no research to demonstrate that SCS had any effect on slowing the progression of CRPS or long term benefits as regards pain relief.

I will continue to search for his post to bump it up.

I know that because of fmichael's post I challenged my pain management physician to provide me with research citations demonstrating the effectiveness of SCS for CRPS. Although I have reminded him at numerous appointments he has failed to produce them. I spent weeks reviewing research myself (although unfortunately I did not save any of it) before refusing to have a SCS implanted.

Twenty five years ago a dear friend had a treatment for CRPS that was, like the SCS today, very much in vogue, sympathectomy. The sympathectomy ignited a spread to the other side of his body, similar to the effect of sympathectomy on thousands of other CRPS patients. It took twenty years for the research to clearly demonstrate that sympathectomy was to CRPS what the Dodge Aspen was to Ralph Nadar.

At the risk of setting myself up for severe criticism I must caution you to do your own extensive research prior to making your decision.

I am guessing that the SCS sales reps that frequent my pain management doctor's office bearing staff lunches, fruit baskets, etc. is repeated throughout the country. I wonder how many of those reps bring solid research along with the plastic models of spinal cords for physicians to share with patients. Obviously my doctor only got the food and the plastic spinal cord.

The frightening thing about spinal cord stimulators and CRPS is that you are playing Russian Roulette.

If nothing else spend a few hours going back to the very first post on Neurotalk and just move forward and review any thread containing the word spinal cord stimulator.


Although a bit dated you could also touch base with my very first research site in my own journey, a doctor named Hooshmand who dedicated his life to treating CRPS patients. In addition to SCS info you will find other useful CRPS material.

Take care!!!!
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gramE (06-05-2011), SandyRI (06-09-2011)