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Are you more active now with the SCS?

NPainNNPain Posts: 10
edited 06/11/2012 - 8:43 AM in Spinal Cord Stimulation
Just curious about how much more active you are now that you have the SCS than you were before you had it done?

The reason I ask is that my Quality of Life really sucks w/o it and I have my hopes set to be able to start being more mobile and active again. Has the SCS really done this for you?



  • Kathy-
    I am 3 1/2 months post-permanent SCS with 3 leads at T8 for low back, hip, and thigh pain. And I can definitely do more than before my stim. Before, I would do my best to get through my work day then go home and get flat and stay that way.

    Since my stim, I have begun walking most days, went to the zoo with my family, camped in a tent and survived, was deployed to Haiti for 10 days, etc.

    I am learning new limits, some days the hard way. Like yesterday when after a full day of work I had to accompany my husband to a business dinner and presentation. I had rested up before the big day but forgotten how little control I would have over chairs of all things. By the end of the evening, I was in great pain and had to go get flat.

    I wouldn't trade this for the world! If one becomes necessary for what's wrong in my neck too, I'll go that route.

    Best of luck to you-
  • Yes I am much more active with my SCS. You have to put things into perspective though. There are many things I could do before my SCS that I can't do now, but that is also based on the type of injury and medications. I am far better off today with my SCS than without it. Of course if I had my druthers I wouldn't have a need for it in the first place.

  • I know that while I had my trial I felt better overall, and was able to walk to my mailbox and back that was a first in 8 years for me. I can barely walk around my own house and have days that I need help dressing and have to stay either in bed or resting in chairs all the time... I am really hating being so inactive. It's like the trial gave me a piece of freedom and then boom it was gone.

    I guess I have been in pain for so long that I am just scared that the SCS will let me down like the surgery did. All I got for my troubles with the surgery was even more pain, I just can't take more pain than I already have now.

    I am a little nervous about the implant, afraid to get my hopes up that my body won't reject it at some point, have any of you ever heard of this happening? I know of people who have had broken bones with plates and screws and later their bodies rejecting it, I don't want something so great to come along and then something like that happen.

    I just want to be able to walk again, take Madi out to play at the park, go shopping w/o using a cart, and be able to see my family that lives 300 miles away. I just want to be me again...

    Again thanks for being here and answering all my questions.

  • I too was very concerned about the "what ifs". What I had to do though was focus myself and become content with the fact that even if the SCS were to fail, I would know that I had tried. I figured that not trying and not knowing was far worse than trying and not getting optimum results. (I hope that makes sense). So I basically went forward with the attitude of "what do I have to lose". Basically there's not much to lose and so much to gain.

    The possibility of rejection with an SCS, is very minuscule. Medical device manufacturers spend a lot of money having research labs do bicompatibility tests on all materials used. These tests check for short term exposure as well as long term implantation. They take into consideration specific use, location and surrounding tissue, even looking for stuff as far out as genetic mutation.

    We can choose to either "go with the flow" and see what happens. Or we can choose to worry ourselves into mentally rejecting something and wind up causing our bodies to reject it as well. Kind of like a self fulfilling prophecy.

    I'm glad that your trial went so well and that you were able to see some relief from the trial stimulator. For me, the "real deal" is much much nicer and I "don't leave home without it".

  • Your current state of mind is typical of what everyone goes through. You, unfortunately have a bad case of the what ifs. Set the concerns aside for now and think positively about all the new found freedom you're going to have.

    To answer your question, no I am not more active with my SCS. Don't let that scare you. The condition (Adhesive Arachnoiditis) I have is progressive. My implant has helped to level everything off. I am finally stable or at least feel stable. I pretty much do whatever I want to, always have, regardless of how I felt. I do however measure what I'm going to do so as to not do any harm to my implant.

    Your going to be fine. Happy SCS Birthday tomorrow!!!!!

  • See this as an 'exciting' time.... this is your opportunity to have a better quality of life!
    And don't expect too much too soon....if ya know what i mean :)
    Take it slow. You WILL be sore for a few days, so don't get discouraged!
    I'm 2 months with my implant and what I have found as a bit 'challenging' is that the post op restrictions rendered my back muscles becoming pretty weak, so now that i can start getting active again, I have to deal with a 'new' pain (muscle pain) as they slowly get toned back up.....but i just do little things at a time and remind myself that this is temporary as i recover from the surgery.

    I'm tapering way down on the meds, thinking more clearly, not tired all the time, but it's a process.
    I was VERY tired alot during recovery. Just listen to your body and don't let doubt and fear creep in to your 'new' chapter in life....

    Best Wishes Kathy!
    Everyone here has been absolutely wonderful....every step of the way!
  • My life wasn't a life before...I worked (because I am a single mom) and came home would lounge around until bed time...now I do things with my kids like sit at ball games, sit outside while they play with the neighbor kids...I can clean my house in one day instead of a little ever day. I can now sit in a car to ride to my parents house...and best of all...I have been dancing (C&W) twice. Can't stay on the dance floor for long...but can make it through one song rest and get out there again. It it wasn't for this device...I would probably be flat on my back most of the time. I enjoy life now. I wish this would work for everyone...but I know it doesn't...just wish I had the power to make everyone's pain go away. God bless everyone...take care and I pray for better days for everyone.
  • I've had pain in my hips for more than 20 years, so I had no idea what to expect from a 'normal' life. After running the gamut at the pain clinic, though, when they mentioned the SCS I jumped at it.

    I'm so glad I did - the trial was a huge success (90-100% pain relief, which is practically unheard of).

    Within 48 hours the insurance company had approved the final implant and I was talking to scheduling with my neurosurgeon.

    I had the surgery April 21st, and spent 4 days in the hospital - they expected it to be overnight, but I never meet expectations when it comes to hospital stays.

    So now it's been a couple of weeks since the surgery. I'm not doing much, at all, but I'm not in pain, either. I drove today, and it was the first time in ages that I've been able to do so without pain.

    On top of that, I've gone off of the fentanyl completely, and I'm taking maybe 2 10mg/325mg hydrocodone and a flexeril a day.

    I went out for a walk with my dog this morning (my mom held the leash, in case he tried to pull), and although the walk around the apartment complex wore me out a bit, I didn't have any pain from it.

    I don't want to get your hopes up, because nobody at the pain clinic can believe how well I'm doing, and my Medtronic Rep that I've had since the trial is completely shocked by all of it. But I am seriously experiencing the world as I've never before seen it, and I still have stitches and steri-strips! I can't wait to see what happens when I've healed up and don't tire quite as easily.
  • Chile - you are a poster child for spinal cord stimulation. What a wonderful success story already! I'm 5 months out and I cannot give nearly the outstanding review that you can. I think you have had a stellar attitude through this whole process too. I hope that you will continue down this good path to full recuperation.

    NPain, I hope your surgery is successful!
  • I have been amazed by how well everything has turned out. I've been able to do a lot more walking, which is unbelievable. My back gets extremely tired, but I'm doing a lot better than I have been in years.

    My mom and I went to IKEA today, which was pretty close to overdoing it (I had to sit and rest a fair few times) but my hips never came out of place and I didn't have anything but back pain. It was a first - yet another.

    It's really funny how positional I am though - if you watch I'll be leaning a bit this way or that or, in one case, raising my right arm! I don't ask why it works, I honestly don't care. It does, and that's all that matters!
  • Well I had my SCS put in last Thur. 4/29/2010 I can't believe the differson. Before the SCS I couldn't walk sit or stand for over 15 min at a time. Walking I was lucky to walk 1/2 block. Now iam walking 8 block in just a week and no pain.

  • Wow, Jim!!! If you're already feeling this good, imagine how you will feel when you're totally healed. Congratulations and best wishes to you.
  • I am sitting in a hotel room in NC after being able to travel with hubby and I'm so happy. I did an experiment - I tried sitting up front like a big girl to see how long I could do it. (My S1 nerve is the bad one and even with the SCS, I can't sit straight up for long. I have a van where all the seats fold flat in the back and we literally take our recliner with us and I sit in the recliner while driving down the highway. Yikes! But comfy. lol)

    I made it 9 hours up front! I was in shock! We got stuck in the Nashville flooding and had to detour to Alabama and spent 2 full days driving. The second day, I was in the recliner, but I was still so excited I made it one full day in the front seat. Shotgun for Cheri!! lol

    I can do almost anything I want - eating out, walking, malls, etc. Life prior was 23+ hours a day reclined fully with only trips to the bathroom. Now? I must be careful not to bend lift or twist EVER, but other than that, the world is open to me.

    Last night, I walked up and in and out of 21 motorhomes and last night was not pretty. I felt completely ran over and maxed my meds. Not sure what it is about stairs that is so hard for me (there are only a few stairs just to get in the diesel pushers, but nevertheless, I did way too much. lol) We are considering becoming full-time RV'ers and were checking out options.

    So yes, I am MUCH more active since my SCS. I'm like an entirely new woman, wife and mother!

    Good luck to all!

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