Seems like everything I've tried has ALMOST worked, worked a little or had complications.

There's been pain management program - some of it was helpful, but unreasonable moron Dr was ready to accuse me of addiction over 20 mg Oxycontin (with dx's of TOS and RSD!) ; TOS surgery - helped some, made RSD worse; pec minor surgery, ditto; IV lidocaine infusion - I couldn't tolerate the higher doseages necessary; IV ketamine infusion - worked very well for a while, then wore off, insurance co refused to pay for.

Now I'm running out of options - there's really nothing else to try to moderate my condition, or put the RSD into remission, not that I'm willing
to try. The SCS seems my best answer for pain relief. I want a better quality of life than I presently have, if there is any reasonable way to achieve it.

The trial SCS was awesome. NO pain in my arms for the first time in 3 1/2 years!! 3 nights of GOOD, refreshing sleep - I felt almost like myself, my old self again! I had energy! My overall pain level was so much lower, it was easy to forget about pain for long periods of time, or just notice it distantly.

Here's the rub: On Sunday, I had to move my head about to find the right position to get stimulation. Driving, I had to sit forward and lift my head up to get any stimulation at all - my neck didn't like this at all! It was sort of hit and miss all day, but I could always find a position where the stim worked. And it worked fine when I went to bed.

Monday it didn't work. At all. In any position.

I saw my Dr Monday afternoon so he could remove it. He said it was a plus that I got such good coverage, and he knows just where to place the leads for the permanent SCS. But he isn't happy that the SCS stopped working - he says the electrode moved down, out of the space he placed it. And if he enters at the same cervical level when he implants the permanent one, chances are the same thing will happen.

So when he does the permanent SCS surgery he plans to enter one level lower, I think C8-T1, that's where he said he preferred. He tried to go in there already on the left, but couldn't, due to scar tissue or adhesions. I don't remember ever getting an epidural or any block or anything at this level that would cause scar tissue?? He said sometimes we're born with adhesions.

So his plan is to go in from the right at this level, BUT he has no way of knowing for sure til he goes in if he can get in there. I'll be totally out for this surgery (I had to be awake for parts of the trial, so I could tell them where I felt the stimulation), so I won't know if they can get in there successfully or not til I wake up.

He's told me I have to decide, and tell him in writing, in the next few days, if I want him to go ahead and place the leads in the higher site if he can't get into the lower right site that he prefers. Knowing that if he does put them there, they could move out of place and give me no stimulation, and the whole surgery, including implanting the battery in my butt, would be for
nothing.

Or tell him if he can't get into that right side, to go ahead and scrap the whole surgery, call it a failure, knowing I have hardly any options left, and having had that brief taste of blessed relief and wonderful sleep.

X-rays won't help. No way to tell til he goes in.

This is so hard!!

What would you do?

beth