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ALmost 3 weeks out now.

nursedina001nnursedina001 Posts: 235
edited 06/11/2012 - 8:43 AM in Spinal Cord Stimulation
Still not sure if I made the right decision. They are having problem finding the right combo for the stim. My target areas are my legs and my low back, I get a lot of stim in my stomach and left rib cage whenever I turn up the stim to a range where it covers my other pain. I called my rep today again and hopefully she can come out soon.

I probably have been over doing it at home and have had a hard time keeping to the "no bending" thing. My doc told me I could bend and reach , just to be slow and careful about it, and I have been trying to. I am going nuts laying in this bed though!! I get out and walk with the dog, and sit in the chair for awhile, but my back starts to ache and I can;t turn on the stim to cover it because of the stomach/rib cage thing.

The upper incision site is still sore but not too bad. More like a nerve pain. It is sensitive to the slightest touch, kind of like a sun burn. The hip incision gets stingy sometimes and can hurt form time to time, but nothing I can't live without.

Just still feeling a little down and thought I would come back and check out the board. I feel better after coming here cause I know there are people here who can understand. No one on the outside world can understand.

Today I bent over to grab a pot from a lower cupboard and felt a HUGE sharp pain on either side of my incision. I assume I pilled at the anchors. The pain is not very bad at all now, just a bit sore, but to be safe, I took a valium and a pain pill and am calling it a night and giving the muscles a chance to rest. This is the only place I can come to talk about that where people know what I mean when I say anchors...lol...

:) Thanks for listening to me. How is everyone else out there doing???


  • We're always ready to have a stimulating conversation with one of our own. Give it time, sometimes the programming takes a little effort. Walking is good. Don't be afraid to take something for the pain while you wait for everything to settle down.

  • Please correct me if I am wrong...but if the pulse width isn't right you can get that feeling in your ribs. I had that feeling and once they changed the width my ribs quit feeling like I was being kicked. I have found I really don't like feeling the beat..beat..beat...I prefer a more constant beat that is close together this stopped my rib pain. Don't be afraid to ask question or pose questions to your rep. I have even asked my rep if she thought X or Y might help. If she doesn't know she takes the time to test it out. Work with your rep and call them as often as you need to. Being only 3 weeks out means you probably still have a good amount of swelling and things might change by the day, week, or month. You will know when to call.
  • It all takes time, to see where it leads you.

    Pulling at the anchors by doing bending and or reaching will always let you know when you over did it.

    Most of us question our choices as hind site is usually clearer than foresight. You have to realize that if you had chose to not go forward with the SCS you would now probably be saying to yourself, "I should have had the SCS".

    We never really know where we are going till we have been there. The depressed feeling is all so easy to come by when we don't get what we hoped for. For those of us who have suffered with depression before our injuries, well, it's like icing on the cake.

    Me, as I approach 4 years of this "condition" I can only say, "I've been a whole lot better in my life than I am right now". I also try to remind myself I could be paralyzed or dead as a doornail too.

  • Thanks for the replies everyone.

    I also like the steady feeling rather than the thump - thump-thump. I did call my rep today and she is meeting me at my PM doc appt next Friday. So only a little more than a week to wait. I did turn down the stim on both feet and just used the one for my back and turned it waaay up. I enjoyed the sensation for a few minutes and thought of it as a nice massage :)

    I am sure it will take many more meetings with my rep to get things right. and I know she told me she will up my options to change things once we start heading down the path. She did not want to overwhelm me right away so I can only put the strength up and down and can't change anything else. I know in time I will be able to and I look forward to that since I have so many variations of pain. Some days it is my left foot that is burning and the next day it is my right butt cheek.lol...

    The aching in my bak is always constant and I am glad that they were able to get the stim up to my mid back and still reach all the way down to my toes. I love my surgeon for that! He said he was not sure if he could do it, but he did it!

    Its a new experience and I know it takes time to get used to. I have a bad habit of thinking of who I used to be versus who I am now. I need to acceot who I am now and move forward. I used to run 5 miles a day, and worked three jobs and LOVED my job as an ER nurse. I put my self worth and made ER nursing my life. Now I tend to feel worthless. but I am slowly learning that it is not my life.

    As I am worried about what I am missing, I am missing the life moments that are happening right now! Life is NOW! So I am trying to take time each day to appreciate the now! I am able to be here for my kids, I can eventually take care of my house better, I can get to walking a few miles day when I get to that point. I am going to try to appreciate the opportunities that I have that most people don;t have,

    My big problem is sitting and standing. I seem to be able to walk OK although I tire easily but sitting and standing are only about 10 minutes. I am 42 and I am facing the fact that I peobably will never go back to work. Its hard to realize that. But I am more than my job, and I have been reading lots of books by William Dyer, They have helped a lot with my moods.

    I try not to take the extra (prn) pain meds if I dont have to. of course I take my regular meds, but all the extra stuff tends to make me depressed and weepy. The valium really helps with the spasms but even at a minimal level it tends to make me depressed so I only take it at night occasionally to help me sleep.

    How do you all cope with your new "life" ??
  • How do you all cope with your new "life" ??

    I really haven't changed my life much through everything I've had done over the last several years. My legs continue to progressively get worse, so I find myself pulling back on an occasion when I think my activities may be to much. I want to live life as long as I can while I still can,

    Like I said in the other thread, you will learn to live with your stimulator.

  • My stimulator has brought life back. I am able to do many things I couldn't in the past. There are still many things I would like to be able to do...but I put those in the category of wishes. Like I would like to win the lotto but in reality...that will probably never happen. I count my blessings for what I have and don't dwell on those things I can't do.
  • I am curious why you are waiting until next Friday to get reprogrammed? When I text/call/email my rep, he's at my house or my office within 48 hours with a smile on his face. In fact, my reprogrammings have always been at my convenience and have never coincided with a pain management visit.

    How honest/sincere/direct have you been with your rep about the thumping, misplaced stim, and incomplete coverage? They are highly motivated to make sure the technology meets your needs.

    In pursuing good medical care, we teach our providers how to treat us. And in the wake of a $100k surgery, post-op pain, and a huge period of adjustment, I think you should be teaching your PM and rep to be promptly responsive to your concerns.

    Please consider calling your rep and getting that reprogramming moved up. Off the soap box now.
  • I agree...they will try to set it up at the time of a doctors visit...in my state all programming has to be done in a medical facility...but if I call and I am having trouble they will meet me in an ER somewhere. They have even met me on a Saturday or Sunday...I don't wait if I am having trouble. For instance...I was reprogrammed Wednesday...and it felt great until I went to bed that night. Now the thump is so irritating I waited until today to see if it would get better because it did feel good in the office that day...no...it is still on my nerves...oh that was a pun. Anyhow I called my rep and she is meeting me in 30 minutes. And because I won't be seeing the doctor the reporgramming is at no charge to me.
  • I hope the SCS works for you. One thing you mentioned that I can relate to is being an ER Nurse and how hard it is to adjust to possibly not being able to work again. For a long time you were a Nurse and all the good you did is quite an accomplishment in itself. Being there for your kids is an important job also. I hope you get the right pain relief with your SCS. Take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I never knew I had a choice. I told her that my stim is basically useless right now and she told me she would meet me at the appt next Friday - which is now in 6 days. Should I call her back and demand an earlier visit? She just took my info and said she would meet me at the next visit. I have never really met this rep before. I had my surgery in another city so the rep who saw me before, is not the rep I have bow that I home. I will call and ask her - thanks :)

  • Thanks Charry,

    This is all so new to me. A year and a half ago, I was fine and now less than 2 years later, I have had three back surgeries, spinal stim, and numerous digestive issues that they attribute to my pain meds. It is just a new life that happened so fast, that I didn't really have time to adjust to it yet. I'm not sure about work. I have a feeling it is over and done with. I am determined though, and I am hoping with physical therapy, I can strengthen my back muscles enough to be able to bear sitting and standing a little bit more so that I can return to work again in some form or fashion. Plus having to deal with workman;s comp is a nightmare. I feel like I am spinning it is all happening so fast.
  • I completely understand what you are going through. Walking and standing is an issue for me too as my pain is in my legs and feet also. I am living with it but will I ever get use to this new life....I do not know. Just coping with this constant savage pain takes up all my time now. I am never depressed...thank goodness. This pain AND depression would be to much I think.
    Hopefully your new rep will get things worked out for you. I had to have my SCS removed because it did not help my pain at all and my PM said it never would. I had a good trial but the permanent implant failed me.
    Because my experiance with the SCS was not good I will not attempt to offer advice. But I do hope the rep will help you and you will be pain free soon.
    Patsy W :H
  • SAw rep - she made the correct adjustments and it was all good. But I needed some additional stuff done and called her the other day and she can not meet me for like 2 weeks because she is either in surgery and then has a 4 day vacation. ugh! Its not an emergency and she did give me free reign over my stim now so I can make lots of adjustments. I just want to add groups and I need her for that.
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