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Need Info on SCS



  • Bionic Woman,
    A good post to think about. I love that I am not in as much pain and have a sense of my life back. I feel very lucky to have found the SCS system to work for me and would not want to give it up.
    Your point is very valid and why it is so important to go through the psych evaluation and SCS trial. These steps help us evaluate if we can live with utilizing and maintaining a permanent implant. We also learn from these steps that SCS is not a cure but a implanted device that has to become part of us to help us.
  • This thread is so full of information that noone would ever get just reading the brochures or talking to the docs. Bionic Woman, you sound like a poet when you talk of missing the stillness. And yet, if the surgery didn't work, you can't tolerate the drugs, what other choice is there? I, for one, resisted the idea of the SCS when it was first presented to me. I had just gone through an unsuccessful surgery, was feeling cynical and, I guess, just hadn't SUFFERED enough. Now, I am ready. I most especially am looking forward to being able to do some activities again. That reminds me, noone had said anything about what types of activities will be taboo. will I be able to play tennis?
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  • Stockbroker,

    You asked about playing tennis. Of course it will be up to your doctor after the implant and everything settles in. Yes, life after SCS improves dramatically. Every day I'm getting stronger and will be back to work soon (UGH-another thread needed).

    During the Trial and weeks after the Implant you will need to be careful for the process. After the implant has healed in, I have talked to people who have regained the ability to do many activities. These people now can go diving, rock-climbing, race car driving etc. are an inspiration.

    I am still feeling the newness and learning each day what my body can do while my pain signals are being masked. (hard to explain). Each of us needs to find our limitations that won't hurt us now that we are excited we can get out of bed. LOL

    Maybe someone who is totally healed and has had the SCS longer can give you a better description of their life changes.

    Take care,

  • Well I've had mine for just nearly 5 months now and have resumed the majority of activities I used to do. Some have had to be modified which is difficult for me since my eagerness to do them is hard to keep in check. For instance, I love to go to the gym and stretch and workout. I also love to do some basic yoga. Unfortunately my extension wires don't quite make up for the amount of flexibility I have and so I have to put my own mental stoppers on myself for how far I can stretch. Also my IPG is located in an area where lying on my back, in certain movements, I am lying on or rolling over the IPG. Of course this can be painful, if not right away, the inflammation it causes later is uncomfortable.

    Now diving is my passion and I have been able to resume that as well. Now there are restrictions there due to the SCS. The unit is limited in the depth it can handle. I can no longer do many of the types of dives that I so love to do, but being able to dive again is awesome. So I have learned to compensate. The other restrictions I have with wearing my gear are due to my physical condition and not the SCS. However, I have learned ways to compensate.

    BionicWoman is right, it is very different waking up in the morning or middle of the night to the SCS. For a while I was turning mine off when I went to bed, only to find the pain was waking me up more than the SCS. So I turn the SCS down at night enough to allow me to fall to sleep, but also enough to manage the pain that wakes me up.

    When I'm not feeling well, I become more sensitized to the stimulation and have to change the pattern and intensity. Otherwise it drives me nuts and I just want to shut it off. Very similar to becoming more sensitized to pain when I don't feel well.

    I did return to working full time about 30 days post op. I worked for a couple weeks and then gave up working due to my physical condition, not due to the SCS. I have muscles atrophied in my neck and shoulders, with cervical dystonia and couldn't handle the stress. The SCS doesn't help with muscle spasms, so the stress of the job made it too painful to continue. However now I do the domestic engineer thing and also volunteer at two different Physical Therapy clinics 1 or 2 days a week. So I am very active with the SCS.

    I average working out at the gym or at home 3 to 5 times a week now and it is awesome.

    In 2007 I was offered a trial on an occipital SCS. Since I was already slated for surgery to correct the problem the SCS would have been there for, I turned it down. I was all about a permanent fix.

    Now I have an SCS to help with the "fallout" from that surgery and other cervical issues.

    I hope this info helps.

  • Has anyone ever had problems with the trial. I did ok for the first 4 days the pain relief was great but then one of the leads some how moved and was scraping my spinal cord and swelled the cord I was is so much pain and could not walk. they pulled the leads and then put me on antibotics and left me in intense pain for 5 days till the swelling went down. Checked for infection which thank god was clean... and now here I am Do I go ahead with this thing or not they say this was a freak thing! the final things are put in different and wont move like that.... Does any one have any insite????? I really enjoyed the pain relief the when it went bad it was really bad..... and not worth the pain again
    What do I do? Jeanette
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  • Jeanette,

    I can tell you that the leads are anchored incredibly well when they place the permanent ones as compared to the trial leads. The trial leads are only anchored to the skin and the permanent leads are anchored internally. I have done stuff that has pulled all the slack out of my extension wires and yanked hard on the anchor points of my leads, and thankfully the leads have stayed in place and not moved.

    Freak things happen. If the docs feel that you are still a good candidate for a permanent implant, then they must have a lot of confidence that you wont have any issues with the permanent SCS.

  • Jeanette,

    I had swelling in my spinal cord toward the end of my trial too, but not to the extent you did. My doctor ordered an MRI as soon as my leads were pulled and that showed the swelling.

    I chose to go forward with the permanent implant, because I had an incredible amount of pain relief from the trial, and haven't had any problems at all.
  • Thank you to all who take the time to post such important information on this forum. It's so great to have a source and not feel so alone. I plan on making some friends here as my fiance and I get more acquianted with our options. Thanks again from the bottom of our hearts.
  • I am so happy I found this site! All of you have been such a help to me.
    I too, suffer from chronic pain thanks to a build up of scar tissue from rods placed at L4 & L5 in 1995. My pain has gradually increased over the years until it is about an 8. The pain in both feet is so bad it's hard to walk or even wear shoes.
    On my first visit to a pain clinic the pain Doc recommended a SCS implant. I go back April 13th. and let hem if i have decided to go ahead with the trial. Thank you for helping me make up my mind.
    Right now i am taking Oxycodone 40mg. twice a day. It takes the edge off some of the pain if I stay off my feet as much as possible.It is the only thing I have found that really helps me. I can't take Lyrica or anything like it. I had a very bad reaction to it. I really thought i was going to die!!
    I wish i could take away everyones pain.
    I fall down..
    I get up with a cracked rib!!
    I fall again... I get up with another cracked rib!! ~X(
    And so it goes.
    A very gentle hug to everyone.

  • So happy to have you here and welcome I'm not a moderator or anything just someone who once said the same thing..."so happy to have found this site!"

    I hope you're trial goes well I have done one too and am awaiting reinsertion of my permanent SCS(long story) and it was truely wonderful for me! I could picture less pain/nerve medication in my future which was more hope I had in a long time.

    As I'm waiting or even before the SCS I can't imagine not having Lyrica, my ankle & foot would be stiff and the pain is impossible, I tried not to take it at one point and couldn't stand myself! So God bless you! I think you will truelly be amazed & what's there to lose? You can always take it out and find another option if it's not for you!!
    Hugs back >:D< >:D< and thx for sending yours!!
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