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Considering SCS

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:22 AM in Pain Management
Hello everyone,
I am considering SCS due to scar tissue around my S-1 nerve root (back surg 4/02 at L5/S1) I have been in pain for 6 years and have tried a bucket full of meds with no help. I have had a Bier block(danger, danger, danger) and more recently an epidural injection and nothing will even touch the pain. My PM doctor (2nd one) is now recommending SCS and my neurologist (I also have MS) agrees that I should try it. I have been reading so much lately that I think that my brain is dead #o but I really want to try to make a well-informed decision about this. At this point I think that I will probably go for it but the logistics have to be worked out. All of the restrictions during the recovery time will be difficult but the worst is the "no driving" part since I have a 12 year old. I would appreciate input to help me with my decision.
Thank You,
Saima :)))
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Comments

  • Thanks for writing.
    I had the Bier Block in my left lower leg, and I must agree with the archaic term. Needless to say I have a new PM doc.
    It involves using a tourniquet like they use in surgery, cutting off the blood supply then injecting lidocaine and a steroid into the foot and leaving it that way for 45 min. When they let the tourniquet up they had to do it a little at a time and boy what a trip, it had me really worried then that I had made a very bad decision.
    Thanks, Saima
  • Well I think it's great that you are being offered the opportunity to consider an SCS. Mine has done just like they show you in those dorky video's ..."changed my life". So I think anyone who has doctors resommending one, should at least consider the trial, and if they don't like it, well then no harm no foul.

    The issue with driving with an SCS is all about liability. The companies don't want to be held liable for you causing an accident. I believe you will see the thought process on this change a bit as understanding SCS stimulation advances.

    One thing with an SCS, is body position changes the stimulation amplitude (causes it to ramp up or "zap" you). So the concern is that while driving, if you turn or move just right, ramp up the stimulation, cause your arms or legs to jerk and create an accident.

    I have grown quite accustom to the stimulation level and patterns and have it adjusted to a point where I won't get "zapped" to a point it causes me to jerk.

    I need to drive with the SCS on, because that is one activity that creates a tremendous amount of pain and discomfort for me. With the SCS shut off, I wouldn't go very many places and would be quite miserable.

    If you give the trial a shot, at least you'll know.

    Good luck!

    "C"
  • "Mine has done just like they show you in those dorky video's ..."changed my life"."

    I'm so glad you said that! When I tell people about my SCS, I always feel like I'm turning into that annoying Austrialian guy on the late night infomercials! :))(

  • I watched those videos and of course you see some well dressed individual, in an immaculate home, speaking to the camera saying "... has changed my life".

    I wanted to stop the video and say okay now show me your scars so maybe I'll believe you actually have one (to the TV of course)

    Now the more I listen to myself when I talk to family and friends and docs about it, I hear myself saying "a life-saver", "changed my life", "gave me my life back" ... I sounds like you said, just like a late night infomercial. =))

    When we can find the humor in chronic pain, that's a good thing!

    "C"
  • I'm right there with you but waiting for the full effect yet. Waiting to be turned on. LMAO

    Keep me laughing, best medicine even though it hurts. LOL

    Saima, seriously - DO THE TRIAL. If you find that this is what will give you a lot of pain relief the other stuff will all into place. You can PM me too.

    C has been great at answering my questions, Thank You and all my other Spiney friends.

    O-
  • I think I have really found something here that will be extremely helpful for me. You seem to have "been there, done that" and boy do I know how it feels. After living with Multiple Sclerosis for 19 years I have talked to newly diagnosed people who have tons of ?'s and it helps ALOT to talk to someone who knows what you are talking about.
    I am still trying to wrap my brain aroun all of the things that will need to happen for this to be possible for me and reading you experiences has raised many new ?'s that I need my dr. to answer. I haven't been given any videos to watch yet but I expect that they will. I guess they are really like those infomercials on TV, and I hate commercials anyway :P I already get "shocked" with nerve pain sometimes when I am driving but manage to be OK with it at least the pain is in my left foot so that may explain why it does't intefere with driving. With MS I have lost many abilities through the years but I keep doing all that I can to remain mobile, and driving is one way that I can keep up with other people, as a matter of fact I have caught myself many times wanting to go faster just because I am able in the car. You are absolutely right about the humor, it gets me through each day, sometimes only laughing at myself :D
    Any more suggestions? Bring them on!
    Saima
  • Here's a link to some more info and a video.

    http://www.medtronic.com/neuro/ttp/

    It's called Tame The Pain

    The cool thing about the feeling of the SCS, is it isn't the electrical jolt you are used to feeling from the nerves. It's not the cattle prod to the body or the tazer to the back. It's more like being in physical therapy and having the PT turn the e-stim up way too high and causing your body to lift up because the muscles just got grabbed.

    Initially I found it to be an uncomfortable feeling that I was wary of. Then once I learned it wasn't going to actually hurt me, I was able to turn the unit up higher for better coverage. Then once I discovered all the movements that would ramp up the amplitude I learned to anticipate them and can set the stim level to where I won't cause myself to be jerked out of control, yet high enough to stay comfortable.

    I really find the stim to be very comforting. Different times of the day I use different levels. Also when I am sick, I find I have to turn it down. Just like on different day, we feel pain differently, well on those days the stim feels different. It's not that it changed, it's that my body feels it differently that day.

    Okay now I'm really spinning your head. Ask any questions you need to and myself and the others will do our best to help answer them.

    "C"
  • I am projecting forward and assuming that the stimulator will work for me but I want to know about the permanant placement. I think that I would want mine in my abdomen because I have to take IM injections once a week and I have to use my hips which would be in close proximity if the implant is in my butt. I do have injection site reactions and I think that there would be a greater risk for infection. I also think that in the abdomen charging would be easier and also recovery since I do sit alot and sleep on my back. My dr. said that he would definately take this into consideration but that his usual placement is in the buttock. Can I get some input on this subject?
    Saima
  • I'm sure your doctor will take all your medical conditions to account when deciding placement of your perm implant. I know it's hard trying to imagine what it will be like and how it will effect everything you have going on, but try to relax and know that your doctor has your best interest at heart.
    I'm really excited for you and how it will help you... Good luck! <:P
  • Hi Saima,

    One of the reasons why the location is on the upper buttock is because of running the leads to the abdominal placement.

    I would ask your doctor how this affects the way the Leeds are anchored and is this a higher chance for leed migration.

    I just got my implant and won't be turned on until 8/25. Even though i am not healed from surgery and can feel the pack in my upper buttock it is not uncomfortable for sitting or laying down. I'm mostly in pain (besides my normal nerve pain) in the thoracic area where the Leeds have been sutured.
    O-
  • I'm kinda surprised that you are experiencing so much pain post placement. I had discomfort after the placement, but I wouldn't have called it painful. I know that each person feels different, but I hate that you are feeling so much pain, especially since you aren't receiving the benefit of the stimulator yet. I don't think I ever heard why they had to wait to turn your implant on...
    I hope you are feeling better soon!
  • My surgeon told me ahead of time my stimulator wouldn't be turned on right away. I have underlying conditions and I am not a normal patient. LOL

    NS wants the swelling and bruising to go down from implant surgery before turning stimulator on. I have issues with thoracic bulging discs, scar tissue and lesions/cysts on spine where NS was placing paddle leeds. PM and NS worked together on "trial" and conferred regarding all the extra manipulation it took to put leeds in, placement and if I should wait until other issues were taken care of first.

    Counting down the days till I get some relief, I know it will be worth it.

    Saima and others, please do not let this deter you from going for the trial. I was told by doctors I'm not a normal case and it would be difficult for me because of other issues.

    O
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