changing programs or levels

Hi Provolish,

I've had a spinal cord simulator implanted for nearly 2 years, and I think I can help explain what is happening and what you should do because I've had similar issues. A couple of things to understand first:

(1) The three programs on your remote control are not fixed or permanent programs. They are whatever your rep initially programmed into your stimulator - and they can be changed. The rep has dozens (actually hundreds) of programs to choose from. The way it is supposed to work is that your rep gives you three programs to start with (after initial implantation), and each program has seven power levels (the power lights on your remote). You are supposed to try each power level and each program and keep a log of how your body reacts - whether (and where) it reduces your pain, as well as whether (or where) it causes "over-stimulation" (more on that below). Based on your feedback, your rep will choose new programs to install into your stimulator (literally he waves a wand over the implant site and it installs the new programs via radio signal). Then the whole process of testing and evaluation begins anew. You keep doing this until you either find the optimal program (and power level) or you (hopefully not) discover there is no good program for you.

(2) I mentioned "over-stimulation" above. This happens when the program you are using is either set to too high a power level or it is "lighting up" overly sensitive sections of your spinal cord. The stimulator company calls that "over-stimulation" (the excessive stimulation of your stimulated nerve fibers) but I tend to think of it as "phantom pain," because it usually manifests as either pain in an area where you've never tended to feel pain before, or it amplifies the pain in areas where you typically feel pain. I've had MANY instances of over-stimulation and I can tell you from experience (and I've confirmed this with the company reps), the rib cage is the most common area for you to feel the over-stimulation. I've felt it there many times. I don't often feel it as a burning sensation (more of a crampy feeling), but I've been told that burning sensations are not uncommon. I think the odds are VERY good that your rib cage discomfort, and also the generalized sense of pain on your right side, are the result of over-stimulation from having the stimulator either turned up too high and/or on the wrong program.

(3) The solution to the over-stimulation problem is generally to turn the power level down for a while, or in some cases to turn it off for a while. The amount of time you need to turn it down is usually proportional to how long you have let the over-stimulation build up - the longer it has built up, the longer you need to turn down the stimulator. I've sometimes had to turn it off for 3-4 days when the over-stimulation pain was really bad (which in most cases was my fault, I shouldn't have let the over-stimulation built up for as long as I did).

(4) Only your local rep can give you new programs. The people who answer the helpline can be sympathetic (they will often advise you to turn your power level down) but they can't give you new programs. And ultimately the stimulator will only work well for you if you go back and forth, IN PERSON, with your rep, trying new programs.

(5) Sometimes the rep won't have to completely change your program to help you avoid over-stimulation. He has two other tools in his toolkit that can reduce the risk of you experiencing over-stimulation. First, he can change the amount of electrical power that each of your seven power levels sends out. He can cut each power light's power level in half, for example. Or alternatively (and this is often the better choice), he can change your "pulse rate." Every time your stimulator sends an electrical signal to your spine, the power is on for a while and then off for a while. It might be on for 20 seconds and off for a minute. He can change it to be off for two minutes, which can reduce the risk (or amount) of over-stimulation. The downside to these changes, of course, is that it may reduce the degree to which the stimulator controls your actual (organic) pain. So as I said before, it's a trade-off, and a question of monitoring yourself. Sometimes the over-stimulation only happens occasionally, and you can just turn it down for a few hours and the over-stimulation will go away, after which you can turn it back up and get the pain relief again.

Your rep should have explained all this to you during your trial period, or just after the implantation. Now that you know and understand this, go back to him and insist he work with you to find your optimal program and power setting... Good luck!!!

Hi, it sounds as though you have the intensity turned up too high. Is is a Nevro? The thee programmes are probably just different ones for you to try to see which is the best one. They will all be for the same area. Turn it off for a few hours, then when you turn it back on, try only setting it at a one, for a few hours then a two, and see if you get any relief, and if the burning has gone. Do this with all the three programmes and see if any help the pain. If not, get the rep to reprogramme it for you.

HELLO PROVALISH,

ALL YOU HAVE TO DO IS TURN DOWN THE LEVELS ON YOUR REMOTE, TO A LEVEL THAT IS COMFORTABLE FOR YOU ON EACH PROGRAM. TRY IT AND ALSO CALL YOUR REP AGAIN, UNTIL YOU GET HELP. I SOME TIME GO TO SLEEP WITH MINE ON, HOWEVER I DON'T WANT TO, AND IT MAY NOT BE ADVISE, BUT I HAVE NOT BEEN TOLD WEATHER IT'S A GOOD OR BAD THING TO DO SO. I REALLY DON'T BE THAT CONCERNED, JUST ASK YOUR REP OKAY. SOME TIME YOUR REP CAN ASSIST YOU OVER THE PHONE, AND SOME TIME YOU MIGHT HAVE TO SEE THEM IN PERSON. DON'T WORRY, IT CAN BE ADJUSTED. GOOD LUCK 😃

Hi Provolish! I had an HF-10 implanted 1 year ago. It has provided great relief - at times - but there has been a lot of fluctuation in the process.

I work closely with my Nevro Rep (who is awesome) yet still the last year has been kinda of a rollercoaster of pain relief, pain and adjustments.

Just had my third adjustment this week for what I am being told in overstimulation. Currently set for 3 seconds on and playing with different off times ranging from 5 up to 40 minutes off.

Would you please share your experience?

At times, I've had 90%+ pain relief, others it seems like old pain is back or that the stimulation aggravates things. It seems that is somewhat common to go through several rounds of adjustments and I take that with time less stimulation is needed hence the need for adjustments.

The pain in interesting, on the side around rib - not crazy pain but def tightness to the point that it does not feel normal, sciatica, low back and cramps. The cramps have been in both legs - my "bad side - left" and "good side - right" which is what has led me to believe there may be something about this overstimulation.

Very interested in your and @seafarer123 - figured to get somewhere with this I have to get info from folks that have gone down this path.

The pain is so frustrating and depressing and unpredictable and it is most definitively interfering with my life. As I mentioned, I have had periods, though short lived, of incredible relief. But always short lived.

Thank you for anything you can share and your time!