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SCS on bad day

WramblerWWrambler Posts: 1,588
edited 06/11/2012 - 8:29 AM in Pain Management
As most of the regulars around here know I am on day 6 of an 8 day trial for a cervical SCS and have right shoulder pain.

About 2:00 pm this afternoon I headed off for a "bad" day :( So I know this is probably one of those things and with any luck it don't mean squat, but I started to feel "wrong" somewhat off kilter and my back was doing it's "campfire" burn. SCS was no help there. At 3:45 I wrapped up my work day and hit the SCS off and drove home.

Now It is about 5:00 pm and I have taken my evening Norco and still have the scs off. I'm sitting here frustrated and in tears...pansie. Mostly just utter frustration! I know the SCS is not magic and it ain't going to cover everything,, but I really thought it would let me ignore the pain meds and get off them. Not run home looking for them!

Hey, I will be OK. I still think the SCS is good. Just think it either needs a better tune or it's not going to be a cure all for the back! I mean if it does the shoulder it is still a godsend to me, just frustrating to know it may not do it all. I knew that going in. I just did not expect it to get waved in my frikkin face so bloody soon! :''(

I could delete this and I will be fine now. I know it is to be expected. But, I'm not going to. Maybe it help someone else go through the same thing, maybe not...

O.K. Suck it up here ya big baby.... L) :D



  • don't fret too much. Have you gone back in for a tweak during this trial? I went in twice during the trial, and then have gone 4 times since I got my permanent placement.

    If you have one lead, they have 8 nodes to work with, and 16 if you have 2 leads. Any number of combinations of those nodes may work, plus the changes in frequency, amplitude, etc.

    If you haven't had a tweak yet, I would go in TOMORROW and get one. That's the point of the trial - to tweak and play with it.

    And no, the point isn't to get off meds. Hopefully, there won't be an increase in meds as we all tend to see as we go along our chronic pain journey's, but getting off all meds is not the goal. 50% reduction in pain or more, IS the goal, but that may still leave some significant pain.

    It's funny how our minds work during these trials. With you having it turned off for several hours, you may notice a huge relief when you turn it back on. I hope so. And, right now, you could simply be dealing with the lead floating and out of the best position to help that certain pain you have right now. Once you have the permanent and it scars down, maybe won't be as likely to feel this.

    Edited to add: Regarding the pain level, for me, I was in such pain from the constant nerve burning that I was reclined 23 hours a day and STILL in horrid pain. I had no life, certainly wasn't able to work or have any other activities. Getting a shower was my big project each day. So for me to even have 50% reduction in pain is HUGE for me. Obviously everyone is different, but I wanted to explain so someone doesn't misread the intention.

    Hang in there,

  • Once the Norco kicked in everything calmed down. No I never went in to have anything tweaked. I know it is working and as good or better then the worst case scenario they look for or so it seems to me! I just figured it did not need a lot of tweaking as it is indeed working 90% of the time so why bother when they are going to yank it out soon!
    I probably should try and do that tomorrow, if I can track down the reps number :)

    I was just kind of upset as it hit kind of hard after going pretty decent most of the way through. I was kind of caught off guard, I forgot that I was really not as good as I sometimes pretend I am. I get into the, "OK we got this made now" mode. Nothing wrong with me... No..I'm good. then BAM, I get a rude reminder this really is a problem.

    Thanks for tips, I will try and get with him tomorrow and play with the settings some to see what else is in there! I still want one!
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  • Just remember that the lead is tacked to the skin only! Even right after the perm implant is put in, you will notice a significant difference in stability because the lead will be anchored most likely to the fascia, providing a far more secure mount.

  • That's part of why I have not been going trying to get it tuned better. I KNOW it does work! I believe it will be better when it is permanent! SO, I figure, why sweat the details now!

    Except it all caught up to me this afternoon so a had moment! It's all good now, the Norco is helping, the SCS is doing its job again! YAY!

    I am going to call my rep and see if he can tweak it. I have some questions I want to ask to, I figure I might get better time if I can talk to him before the leads are pulled.

    Maybe that will change anyway? I just saw in the local paper my PM's mother passed away and the funeral is Thursday morning. Since they said he wanted to be there to take it back out, I'm not sure if they may change the appt.
    It is a pain to try to get to him and actually Talk to him. I really would like for him to be there. If this all gets tossed into the netherworld of miscommunication again. I shall go insane.
  • Hi Wrambler...

    I'm sorry you're having a rough day. I know it's hard to avoid feeling a sense of disappointment when you have such a bad day, even with the temp. SCS. But..don't forget, your body is still prob. healing from the actual temp. procedure. Also, did your doctors tell you that you would get off your pain meds? My docs said, realistically, I'd still be on them but hopefully I can take less at some point. It's ok if you still have to take the pain meds...the point is to try to best manage your pain. If that means SCS + meds = good pain relief..then that is OK!!

    Also, I am curious...do you have one lead or two lead? I had my first trial with only one lead and decided to re-do it with 2 leads and was much happier with the 2 leads. I ended up having the 2 leads perm. implanted, as opposed to one.

    I hope you sleep well and that you feel better tomorrow. HUGS!!

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  • Wrambler has only one percutaneous lead. Even with two in the c-spine, for the trial it is really really positional.

  • I'm not sure if I have a valid reason for two leads? I need to discuss this stuff with my rep and PM. I was wondering today if a second lead would help gain better coverage on my back.

    My pain is like 99.9% in my right shoulder with stabs and various other things down to my fingertips on that hand.

    Everytime I get active or there is a full moon :) I get a back pain that feels like someone has set a fire deadcenter in my back. That is what I had today, Fun fact about it is that it is probably the one part of my pain that Norco seriously works on.

    I would hate to have to redo the trial, that must have been a hard choice to make? At end of day 6 I must say I have gotten quite use to the "buzz" I sometimes do not even notice it. I will be very sad when it is gone! I much prefer it to the pain and meds.

    No, they never promised me I could get off meds, my PCP hopes that. No one at the PM ever said that! I just wanted it :( If you know what I mean? I will hopefuly get a hold of my rep tomorrow and work some of this out with him.

    Thanks for the replies, it helps a lot!

  • For all the Medtronic users out there.

    Why does the handheld remote have a power button? Is it to confuse you? Or to help you with your finger skills?

    First off if you press the synch button while the unit is off it comes on.

    Second it shuts off automatically!

    Three it would be nice if the frikkin screen backlight actually came on when holding down the power button.

    Four none of this really matters, I was just bored! :D

    Edit: just thought of one more. Will the emf generated by the permanent unit cause me to develop super powers like G girl on "My super X girlfriend"? =))
  • You were bored!

    If the backlight doesn't come on when you press and hold down the power button, then it is broken or disabled.

    I find I don't even use the back light and yes you will become quite adept with your finger skills. I don't use the external antenna anymore to make adjustments, I can do them simply by "feel" I guess you'd call it. I have gotten so used to the buttons and functions of the patient programmer, it's like driving the car. Oh and my IPG is implanted in my backside.

    Hope you have a better day.

    Oh and I won't tell you about the super powers that develop over time. If I were to do that then I'd lose my secret identity!

  • I have a bit of OCD and it forces me to use that power button to turn off my remote when I'm done using it. It's funny how those sorts of OCD things work though, because I don't use the button to turn it on - just off. :))(
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