Originally Posted by ballerina

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!!!!

Originally Posted by daniella

I too was suggested the scs. I then went for a couple more opinions. I chose for myself not to do it. One of my pain doctors though it may actually increase my pain. I also feared the spread to the area where it is implanted. I hate to say anything negative to you because I do know someone who did benefit from it.
Can you go for another opinion? I would also ask the doctor about if you got worse or this spread what would be done?
Did you do the ketamine infusions? Or is it oral you are taking? If you do the scs I too hope you get relief. It sounds like you have been through a lot and I can understand the point you are at cause I am in similar place of needing to do something more.

Originally Posted by Rachel4444

Hi Daniella,
I have only had ketamine orally, I haven't had the infusions, to be honest I hadn't heard of them until now. I have heard of ketamine comas, which I believe they do in Germany. I will keep your post in mind, and will research around a bit before I have it done

Thanks!

Originally Posted by ballerina

I am very concerned that you believe that your doctor "knows his stuff" but has not even offered ketamine infusions prior to suggesting SCS. Please educate yourself on alternative non-invasive treatments. Have you tried graded motor imagery, mirror therapy or tDCS?

Your best weapon against CRPS is to be your own advocate!

Please give us an update on how you are doing!