I got great coverage of my arms with the trial SCS, and 3 BLESSED nights of sleep. I want this to work so badly - only fellow RSDer's could understand just HOW badly I want some relief!

Here's the snag: For the trial, Dr tried to go in at C8-T1, on the left, to insert a lead (for the right arm). He couldn't get in due to scar tissue or possibly adhesions, he said. So he went up one level and was able to insert leads left and right side fine. But because he had to go up, even though I got great coverage, the electrode placement wasn't the best, and by day 3 I wasn't getting any stimulation at all. When he took out the trial stim, he said it looked like it had barely moved, the problem was contact was being made at the very bottom of the electrode, if it moved much at ALL, I lost everything.

So he is really reluctant to go ahead with that placement, for fear it would quit working before the leads would scar in, no matter how careful I am with restricting movement. He wants to instead try inserting both leads from the right at C8-T1. He says it will be more difficult to get them both from one side, but he's pretty sure he can do it. (He's implanted 130 of these and has 85% or better success rate, so I do have confidence in him, that's not the problem at all.)

Since we discussed this a friend on the TOS board reminded me I'd had EMG ulnar nerve root studies of the C8 across the brachial plexus, a TOS dx study. I've had 3 on the right, explaining the scar matter there - funny how I could forget those But I've also had one done on the LEFT!

I don't know how much scar material one EMG can cause - or if ANY scar matter will make it impossible to insert the leads at that site If that's the case, it seems more likely than not I won't be getting an SCS after all

I could tell the Dr I want to go ahead and try placing the leads in the higher sites if he can't get into the lower one, he's leaving it up to me. But it's a lot of surgery (implanting the leads, making a tunnel down my back to hide the wires and an incision in my upper butt for the battery pack) to go through when the odds are not in my favor.

And I haven't told him yet about the EMGs at C8, that was just brought up yesterday. I REALLY dread calling and telling him!!

And yet, the 2 days and 3 nights that the trial SCS DID work, were SO wonderful!! My arms didn't HURT, or pain was so low it didn't register I slept like a dream, even laid on my "bad" arm and was fine. I woke up relaxed and had energy, felt almost like my "old" self, pre-injury. Couldn't stop smiling!! DH and my kids loved it too. I'd try almost anything for a chance at long-term relief like that, even if it quit after a year or two that would be precious time gained with my husband and growing daughters.

Question: anyone have a clue how much scar matter an EMG can leave behind, and whether it might still be possible to insert the SCS leads anyway?? Xrays won't help, no way to see if or how much scar matter til he goes in there, and I have to let him know soon if I want him to go to the upper sites if he can't get into C8 rt side.

TIA, beth