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?

Hi there! I can understand your difficulty in making your decision, been there! As you may already know, I had two SCS's implanted at the same time in June 2011. SCS will not prevent spread, it is only to help manage your pain. Some folks had spread because of the implant surgery, I am not one of them. I have had spread since my SCS's, but the SCS's had nothing to do with it. Spread was from new injuries, etc.

I cannot say anything about Calmare Therapy, I have not experienced it and have read mixed reviews on it.

I wish you the best of luck in your decision making, it is tough!
Nanc

Agreeing with Nanc regarding the CRPS spread issue. I sure hope this is NOT happening to you
Spreading of CRPS due to SCS is discussed a lot at the RSD forum, as it is certainly a possibility. Glad to see you posted this question over there also.

One thing I might interject is that after having the trial leads removed, the pain can come back full-force in a lot of cases, and waiting for the permanent implant can seem like an eternity. I hope the doctor who did the trial will address the pain to try and determine if it might be spreading.
Do keep a journal. It's a great reference.

How well (if any) did the trial work as far as covering over the original pain? I know how difficult it can be trying to figure out which pain is what.
My heart goes out to you as you wade thru the pros and cons.

Rae

Knowing the onslaught of pain after Trial was over and remembering it well, I feel for you in this difficult time of weighing options. A tough decision..... that.

Hoping in your final analysis, the last therapy standing is The Therapy which helps you and helps you in a good way.

Pulling for you,

Scs does not prevent spread. Although there have been many anecdotes of spread following scs implant, there has never been proof of causation. IMHO, just keep moving / keep doing what you can. That's the only "proven" treatment. No drug has proven efficacious for this. Therefore, i take none.

My rec is get it if your trial is great. Mine was and my perm is good, but not trial level. Crps isn't like other pain conditions - it's whack a mole. The pain moves- you need great coverage to justify implanting it.

Well, a little humor sure helps! LOL, "whack a mole"! How accurate is that?
I appreciate the support and even if treatments do not work the same across the board it still helps so much to share experiences!

Thanks for the reminder to keep a journal and thanks for the sharing and the support!

I digress. Ketamine. Only quality trial showed very good effect in 25% of crps1 pts. Crps2 not studied. Anecdotally not useful in crps2. I can make. A "testimony" on that! Made me throw up for a couple days. Will never try that again.

AZ-Di - pardon my little side track.

MD- do you have any idea why they have not studied the effects of Ketamine for CRPS 2? I am assuming it doesn't work well with CRPS 2 due to the severity of the nerve injury that caused it to begin with? I was told in my case the nerve(s) that were damaged will not heal and that due to the location of damage that this will be continually irritated therefor it has been said that remission from the CRPS isn't likely. I am still optimistic but curious if you have any thoughts. Sorry the Ketamine caused such nasty effects and didn't work out for you.

Dear friends

With everything going on
THE MOST IMPORTANT THING YOU
CAN DO FOR YOURSELF IS LOG EVERYTHING
DOWN IT WILL BE YOUR SAVING OF ANY TURD
THAT MANY DO THROW BACK TO THE PATIENT
Log "ALL"

Someone who cares