Hi Guys! Just wondering if anyone else has experienced this...does your stimulation happen even when your SCS is turned off? As many of you know, I have two SCS's (cervical & thoracic). I have not been able to use them much lately because of an issue with my lower back, they increase pain and pressure there Anyway, I haven't had them on in a few days but feel stimulation in my legs...bizarre! I usually only feel this when I am laying down, but now it is all the time. And yes, they are definitely shut off...I checked

Thanks -
Nanc

My surgeon has spoken to me of the effect continuing beyond power down and has urged me to shut mine off completely because he says patients of his report it still has effect for a time once powered down.

I have not been courageous enough to power it off for fear it might not "want" to power up later. I have been experimenting with very low freq usage for many weeks now, realizing I have been doing OK and have not had more than the one spike. But power down? Nah. Not me. Not now.

Yup,

Hi Nanc,
I asked that same question a while back although I cannot find the thread. There is actually a word for it…starts with a “P” and I am sure someone will pop in and spell it for us….
My rep said it is not possible…yeah right…I get it often. The first time I noticed it was when I had a very bad chest cold…I awoke coughing my lungs out …that sent shock waves all along my pathways…it really hurt and the SCS was OFF. I often feel it just slightly when it is on off.

Now when it is on and I cough…I do feel an increase spurt then it goes right back into rhythm.
My stim is located at L4 L5 so it is right behind/between my lungs.
All my best
Johanna

My doctor and rep said this was normal, set up cycle programs because of it. So, yes.

The P stands for parasthesia something or other. It's strange that you feel it constantly several days after shutdown.
Perhaps this is a good thing? since your unit isn't on, you don't feel that pain and pressure in your back?
I'm in the same boat with that issue (pressure in lower back), Nanc, and spasms kick in to boot!

When will the madness cease!?

Mark, I am so glad to hear you are doing well with your unit as you experiment with using lower frequencies. I bet this will give you longer battery life as well.

Rae

Me hopeful too.

Thanks for the replies guys!

I asked my rep about it a while back, when it only happened when I laid down. She said that she has heard of it happening from some of her other patients...some didn't have it completely off, it was just set very low. I haven't discussed this sensation that has been happening constantly with her yet. I only had the stims on for about an hour on Sunday and the stimulation is still here. I don't see how that can be so normal. I had x-rays taken last week, still waiting to hear from dr about them.

Rae - turning them off eases that pain/pressure in my back, but it doesn't go away completely now Sorry you are having such problems with your back!