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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!
  • 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!!

  • 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. :))(
  • It was a trial unit, and it came out this am, about 2 hrs ago. :''(

    I miss my leetle friend! :''(

    I also hate living in this town right now :( I read about the wonderful reps and fast service etc, etc, I call my rep and he calls me back after the trial is over! The PM clinic tells me they make all the adjustments not a rep as Medtronic is short handed? WTF they could not tell me that at the trial start is beyond me X(

    The PM that handles the SCS units talked to me today. He says I have to be able to not take narcotics once the SCS is in! :O So then I told him I thought I can do that :^o
    I honestly think that is possible, but it is not something I would bet any money on at this point.
    The other thing that I thought is, How in the world can they enforce that at the PM clinic? They won't write the scripts for my meds any bleeping way! If it does not work and I end up worse or still in need what are they going to do? hold me down and take it back out? Stupid planet...

    I think it will work. I just hate the idea of being forced into that position. I intend to do that anyway. at least I will try. One of the things I liked about the SCS is it worked on the pains the Norco did not touch! Since I have worked down from 6 a day to 4 I intend to keep working down. I'd like to be off of them before the permanent SCS goes in!

    Yes, they are working to get it approved. The lady that does approvals said she may have an answer as early as today! Well probably not as we asked for some idea on how much this was going to cost us. Not that it will stop us, but with one son in college it would be nice to know before the bills hit the mailbox!

    <:P :H
  • BotzBotz Central FloridaPosts: 223

    Sorry you had a difficult time with your SCS trial. I think that the PM Dr. would have been responsible for adjusting the leads. And the Medtronic Rep would adjust the programs.

    So far my ANS rep has been very attentive. She actually called me today (Saturday) to check on my status. So far so good! She told me to call her tomorrow if I had any questions or concerns.

    Nobody has mentioned anything about getting off all meds! :jawdrop: I can only hope with time. :))) No breakthrough meds for me today! Yippee!!!! I see my Primary PM (the PM I have been seeing for years that is responsible for all of my medications) on Wednesday. The day after my Trial ends. So I’ll see what happens then.

    Take care B)
  • I sent you a PM too. I basically told my PM what they want to hear. I am down from 6 Norco a day to 4 and want to go to 3 on Tuesday. I do not know if I will be able to, so I'm also go to ask my PCP if I can try moving to Tramadol to see if that will help me get to the surgery day.

    I have not heard from my PM about the permanent yet. I do not know how long I should wait before reminding them I want this taken care of! If they expect me to to stop taking pain meds the least they can do is hold up their end of the bargain!

    Also, it is not the usual for them to force people off pain meds when getting an SCS. It is however the ideal situation. I am going to go for it, painful as it may be.
    My thoughts are, if I fail, what is my PM going to do?
    He does not write my Pain med scripts anyway! If he refuses treatment because I am on pain meds at least the SCS will allready be in place.

    I really feel like venting about the whole situation anyway. I feel like I am totally trapped here. Going to a PM I do not like for surgery none-the-less! He has good records and does not push treatments. He does not do pain meds though and the additional push that the SCS "will not work with narcotics and you must not take them" statement has me near to furious. Only because of what it really would mean to me and my treatment kept me from telling him he was full of ****! I guess there is not a reason at all to not let him do it. Like I said once it is in, I will do what I need to do to be as normal as possible
  • The SCS works just fine with narcotics.. speaking from direct experience. ;)
  • I easily went from 6 to 4 Norco a day on the SCS. Now, it is gone and I am having a very difficult time maintaining that level... Very difficult.

    I really want to not be on them at surgery day, but, I have many things inbetween now and April 20. I am struggling to decide how I can get there. I do not even have a firm commitment on the date. My youngest son is playing high school lacrosse. I have not gone to a game :(
    It is too cold, I hurt. I barely make it through a day now.
  • BotzBotz Central FloridaPosts: 223
    [quote=] I really want to not be on them at surgery day, but, I have many things in between now and April 20. I am struggling to decide how I can get there. I do not even have a firm commitment on the date.

    Why? I don't think the permanent surgery will be much worse then the trail. And a PM that demands you be off them sounds crazy to me!

    I can't possibly see getting off all narcotics any time soon. Even after the permanent surgery there is a possibility that I will need some form of pain relief. I hope I don’t need them the rest of my life but I’ll have to see.
  • The permanent one takes actual surgery. Not as severe as most, but still surgery.
    Trial for me was precutaneous lead inserted between my shoulder blades and run up to the C-spine. Then a couple of stiches to tack it in place and hold it down.

    Permanent one will be two leads to allow better coverage. They place the leads much the same and make sure you have coverage. That part is much the same as the trial.
    Once they have the leads placed. They increase the sedatives till you fall asleep, not an actual general anesthesia. They then make a 2-4" incision so they can work. They also make a similar incision on your back, buttocks of stomach for the controller/battery. They then make a tunnnel between those two incisions. I assume they use something resembling a lipsuction attachement? Not sure, but this is to run wiring between the controller and the lead. Once it is all done they sew you up, wake you up and send you home! In my case anyway it is same day surgery done on an outpatient basis.

    Paddle or surgical leads require a laminectomy to allow them to be place and a couple of stitches hold them in place. often those leads and that surgery requires longer hospital stays.

    As for the narcotics, that is coming from my PM and is not the general view. Most say that an SCS is part of a treatment plan, not a cure. My PM is one of the guys that does not write scripts for anything. He does injections, SCS, etc, I am simply going along to get along. Sad huh?
    My insurance provider is an HMO, to find another place to be treated I am looking at 2.5 hours drive for in network coverage and 2 hrs for out of network. It has proven to be difficult for me to get approval to go out of network. If it was not for my PCP fighting for me, I do not know if I would have ever gotten approval to get me second opinion! I would either be not getting care at all and living on what pain meds I could beg scripts for. My local PM wanted to resume injections on me. The second opinion doctor in Pittsburgh, Pa was the one that took the time to fully evealuate my MRIs, cat scans, and the full extent of my treatments and recoment that I persue an SCS trial. Once he did that, I then had to get my PCP to appy pressure to my local PM. My PM then relented and said perhaps that is the best choice! So that is where I am now and why I am agreeing to the narcotics reduction and possibly stopping them. Not that it is generally considered needed but rather because I want to go along and get this implanted.

    If I need narcotics or something else once the SCS is in, I will fight that battle when it becomes needed.

    Don't feel like this will happen to you, most generally it is not considered needed. Most generally it is not even suggested since they don't want people to get their hopes to high and have them crushed when they still need meds.
    My PM is more of a PIA...:)

  • When I was finishing up my psych eval, the psychologist wanted to make sure that I understood the following: 1. implanting the permanent stimulator required surgery 2. I would need to have the battery replaced every so many years and 3. I probably would still have to take narcotic pain medication. He was emphatic that I be aware of these things before proceeding so I don't know why you are not getting the same information as the rest of us. Susan.
    p.s. Wish me luck. Tomorrow is my trial. My heart is pounding in anticipation.
  • I know why, my PM is a (bleeping expletive). :)
    However I am either going to play nice and get what I need or start over. I do believe we know what that is like.

    My Psych eval was done by MY psychologist because my PM would not bother to schedule one! My PCP on my behalf arranged for him to do it. My Psych and PCP tried to get my PM to send over information on what they needed my Psyc to do! The PMs office never sent anything! So my Psych did a general exam disscussed with me what I knew about the device and sent the results of that to the PM. They accepted it. I have done all my own teaching to myself!

    My PM never even had me in to talk to me before the trial start! Not at all! I got a call and was told they wanted me in at 9:00am to do the trial, asked me to be aware of that told me what to stop taking a week before the date and mailed me scripts for labs.

    That was the extent of my being informed of what is going on by the PM.

    I feel like I live in a vast wasteland of pain. This place is unbelievable. I dare not say BOO at this point or I will be driving many hours to start anew.

    Susan, I will try and remember to keep you in my thougts tomorrow. I hope you get the best I know you have been a long time getting here!
  • BotzBotz Central FloridaPosts: 223
    Too much to have to deal with! I'm sorry that your PM is an @ss. Now I understand. Go with the flow and don't rock the boat. I too have a new HMO that is giving me fits. I would have loved nothing more then to stay wit my old insurance execpt they increased my premium from $42.00 per week to $122 per week. I had no choice but to change.

    I will se my SCS PM tomorrow to remove my trial. Then my Primary PM for med refills on Wednesday. I'll see how well things go! I don't expect any problems.

    Best of luck with your trial! I will have you in my thoughts and prayers!
  • I hope it works well for you!! DB
  • great, now I am waiting for the PM from H#!! to write a letter to my insurance company about my trial and what it did for me to see if they will approve the permanent version.

    When I asked the Office patient coordinator how long that would take she told me it was hard to tell, A week to a week and a half ~X(

    Now, I have to wait, these people are the same ones that FORGOT me when I needed the first ESI done. They just never called to schedule it! I called and they would not return calls etc, I finally went to administration level to get them to do the ESI. They did not work, but at least we tried.

    I'm really hoping this will not be one of those same situations. I do believe I will go insane or sumpin, sumpin if they drop the ball again!

    Welcome to my world... <:P

    In actuality it is probably nothing at all, I was just hoping it would move a little faster. I've been trying to stay at 4 Norco a day and it ain't easy without my leetle friend!
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