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finding new limits-

MackenzieMMackenzie Posts: 76
edited 06/11/2012 - 8:43 AM in Spinal Cord Stimulation
I am 3 months post-SCS implant with 3 leads at T-8 for lumbosacral neuritis, right sacroiliitis, and a host of degenerative vertebral/disc issues. Some days I feel like I could ride off into the sunset, and others like a few recently, I feel chained to a fence.

I have traveled since my implant and done well. I tried camping last weekend and my spine locked up twice. I began a walking routine and have now injured my right ankle from overuse and gotten grounded for two weeks.

And Friday, I was diagnosed with fibromyalgia and given lab orders for umpteen tests and a dozen x-rays to rule out inflammatory arthritis (my mom has RA).

Did anyone else feel like getting the implant was supposed to be closing a door on the chronic pain chapter of your life only to find footnote after footnote being added to the text?



  • i had SCS implant in Jul 09. I was diagnosed with RA years ago. Thought it was going in remission since my neuropathy pain was intense. But now the neuropathy pain is much less but the RA is again painfully. I think the neuropathy pain was hiding the other.
  • Yes, I understand exactly what you're talking about. I hoped that through a small miracle that I would be like the people on the DVD you get from the doctor's office. Actually, the one I saw was for pain pumps and I've had it only a few months now. I know it's totally different but you get the feeling that you should be leaping through the valley and doing cartwheels LOL.

    I also understood that these implants are not a cure all and they don't make you totally painfree. I am still in a titration process so it's not over for me. I've also been sidelined with a fibromyalgia diagnosis and I'm trying to get over this disease flare. My labs are done and I have to wait til my rheumatology appt to see what it all means.

    I hope you get relief soon but remember to take things easy and one day at a time. Take care
  • 1 day at a time is the only way t otake things
  • We most all hope the scs is the end of the road, sort of a merge lane onto the highway of life. Hmmmmpf,
    More like it is going from a potholed graveled lane to a two way highway, lined with traffic lights and mandatory brake check stations.
    It beats the potholes and the gravel, but you got to be careful of the traffic lights, and don't even think of ignoring the speed traps!

    Finding the new limits can be a brutal process in and of itself. Unless you are carefully guided by an occupational therapist or similar, it is learn as you go. Being stubborn and male, I take mental notes of what/when I need to stop. Then something comes along that I simply can't ignore, so I trudge in and do it anyway.

    My current bad stretch is self inflicted, I knew from day one I should not pick up my 100lb dog, but after almost 12 years, I would have done darn near anything for him, which we did.

    anyway, finding your limits is the first step. Learning to stay withing their bounds is number two and for me is the hardest to follow. My intellectual mind screams stop. My emotional mind just tells it to shut up. So I end up saying ouch.
  • Good analogy. I think if you take a snapshot of just about any implant patient's life post implant, there will be a time when they feel they have the world by the tail once more. Then someone turns the page.

    Don't get discouraged. I have found that as time goes on, I am able to do more things simply because I found a way to fit them into the limits that as Wrambler so nicely pointed out, I found ... the hard way. 2 back to back revisions are a good indicator that I was doing something I shouldn't. So I had to stop and modify things.

    The back locking up and ankle injury while they stink, are a sign that your SCS has allowed you to get out and start living life again. It's expected that as we become more active after a period of inactivity and surgery, that we have to build up to better and better things. I work at it every day. Some days are more successful than others.

    I think that with having an SCS, especially in the first year or so, we become very in tune with everything in our bodies. Since we are bombarded with the stimulation up to 24 hours a day, we either tune in on the stimulation, or tune it out. If we tune it out, then our focus can shift and suddenly stuff we hadn't felt before because we hurt so bad, comes to the forefront.

    It is definitely a lifestyle change having an implant. Hopefully yours can be for the better as time goes along.

  • Thanks for the analogy. Always knew I had a lead foot, you just confirmed it.

  • My take on all this. My life before SCS was a road ending in a deep canyon...I choose to take a u-turn and find anything that could give me some part of a life back. This U-turn came with it's own set of problems, but along the way I found doctors wanting to help find relief for me. In the most unlikely spot I found a doctor so passionate about treating his patients and a desire to help me where everyone else had failed. My doctor searched out this technology for several of his patients and it took 2 years to find a competent PM doctor that he would refer to. First PM he sent patients to was a quack on every level, but that is a different story. Once I was navigated to the right road...there was gravel and potholes...but at least I had a way to work around them...it wasn't the canyon I had faced before. At the present time I am on a straight and smooth road...I expect the bumps along the way...but with all the advances in technology...I am certain there will be something new, down the road...at the right time for me. So to answer you question...yes...I think the SCS takes care of so much of the pain that undetected pain is uncovered. I don't think chronic pain is from one source...I believe it is a combination...and our bodies deal with it in different ways. Once one source of pain is dealt with the others may...and I say may surface. I believe that is why my stimulation points have changed...to cover that prior hidden pain. Just my own thought...no scientific proof.
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