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

I have full body, but it cannot be linked to my scs(plural) I have none in my neck, where the last one was planted, but my back is a train wreck. I have it in my eyes, and experienced no trauma there. I also was dxed this week with peripheral neuropathy and small nerve fiber neuropathy. Basically, my entire nervous system has gone insane I guess. Nerve diseases are a bucket of fun. I will say this. My scs's keep my leg and arm pain very minimal and I'm hoping with some tweaking this week we can cover the back spread. I have two. Surely the leads have contacts that will hit some of it. I had suspected back spread for awhile. After all this time, we finally have confirmation.

Praying you are......., well, doing well despite those things I just read....

Hey, can you see me waving??

I am, uh..... in the Dallas metroplex where I will be this coming week as I work through the bar exam...... again. Well, some people think I am doing a youthful person activity at my silver age.....

Anyway, figured I should give you a howdy do