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Grand Magnate
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Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
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Grand Magnate
Join Date: Nov 2009
Location: i thought it was in my left pocket
Posts: 4,117
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Nan 
I'm so sorry things have taken such a drastic turn since you first started your trial. First off, take a deep breath  Anxiety, confusion, panic, etc all play a roll in tensing our muscles and pain flares avail.
The fact that you did seem to respond favorably those first 2 days is a good thing. Your first couple of posts reflected how impressed and hopeful you were. The SCS is wonderful for leg pain and sometimes they can program the stim to your lower back, so try not to lose hope ok?
99 times out of a 100 your leads will move, even slightly, during a trial run. They aren't connected very well at all during the trial. This might be what has happened, like Pam mentioned.
I'm sorry your Rep didn't seem to comprehend you when you explained your concern over your level of pain. He seemed to kinda write off your concern and made it sound like a positive thing that your pain score went down a half a point  wow.
No wonder you are left feeling like this.
So, are you not getting the stimulation at all at this point? Or, are you feeling it in a different area? Maybe the stim is actually causing more pain?
questions questions 
Have you tried adjusting the pulse/width? The higher the pulse, the more 'buzz' you will get. Sometimes that high of a buzz actually works against me and I feel like I'm crawling out of my skin. So, I turn it way down so that it is more of a 'tap tap tap' rather than a constant bzzzzzzzzz. Other times when I get breakthru pain, I crank it up high.
You mentioned that your controller is getting a work out, so you probably have tried all that I've said.
When is trial going to be over? When you go for the appointment it would be good to have someone with you in case your medical team doesn't seem to be able to 'hear' you very well. If you have someone with you they will be able to help 're-direct' the issues that are most important to you.
Sometimes doctors do tend to make light of a situation in favor of what *they* want to hear, thus a more positive report goes into your file. why? because it makes them look good. Hopefully the contrary is true in your case and you have a very understanding/good listener doctor who will do their best to get to the bottom of this.
Again, don't lose hope just yet. Let's see what your doctor has to say.
I'm not too impressed with your rep from what you've shared.
It would have been great if he could've tweaked you back to where you were at the beginning.
Please keep us posted.
I am praying for your situation.....
Rae
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