O.K. so I'm all over the place on deciding whether or not to get the permanent SCS. I had the trial removed on July 11th. After that I was not ready to decide ANYTHING!
I went for a consultation about "Calmare" therapy and I was leaning that way. I presented the info. to my pain Dr. (she wants perm. SCS) and she was not impressed. Of course they are in different camps and neither bellieves in what the other is doing.
Anyway, now I suspect the CRPS is spreadiing.
Does anyone have experience with either treatment helping to prevent the spread?
I posted this in the SCS subforum as well.
Many thanks to SloRian for the info. on the Calmare clinic (I went to the Scottsdale AZ location). I found them and was impressed.

There is absolutley no way to prevent spreads it does in 77% of us and can be from the slightest Trauma as for SCS's some top specialists in America have stopped using them, a paper was published stating that they cause CRPS at the incision sites in 60% of operations, however some sufferers said they were still better off than before, others had to have them taken out again

Agreed. Nothing I did helped shop mine spread to all 4 limbs in the first 5 months. I thought it was my fault but my physio has put my mind at ease. Probably the stress was making it worse. lol. We now work on keeping my body in a state where I can cope with the progressionand keep my limbs useable. It will do what it wants, its up to us to deal with it best way possilbe.

Do you know the name of the research paper thay was published? I would be very interested in reading it. Thanks mandi

Me too! I would be interested in a link to that paper. I know there's a good one published by a Dr. Hooshmand (he's retired now) but an expert on RSD/CRPS. Do you remember if this was it?

I have not heard of anything that prevents spread. However...I have heard of people who were able to get areas of spread to go into remission or the symptoms to lessen significantly by aggressively treating those areas at the first sign on spread (with the sorts of treatments that we all wish we could have gotten with an early diagnosis that most of us never get). Things like desensitization, physical therapy, lidocaine creams or patches, blocks, etc. That's not MY experience...but I have no reason to doubt those who have told me their first hand experience with it.

Dr Hooshmands paper is one of hundrerds I've read I have over 100 papers downlad, if I remember rightly the one stating 60% was somewhere here
http://www.thblack.com/links/RSD/index.html best US site for Papers but theres a lot to go through

I've had an appendectomy and a hernia repair (opposite side) since my onset of CRPS. I now have periodic intense deep, burning pain at times regionally now that was never realized before. Thankfully it is not very often but when it occurs, stops me in my tracks and doubles me over....