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Update on my two SCS implants.

mcarr36mmcarr36 Posts: 73
edited 06/11/2012 - 8:35 AM in Chronic Pain
Hi friends,
Tomorrow is my last doctor's appointment before returning to work. I have not had the best results from the SCS for my head pain. I do not have the coverage that I would like. I do get partial coverage so I am just a little better off than before. I guess I should be happy about that. I have had 4 sessions of reprogramming since the implant surgery (June) and I will continue to try again in the future. I had an x-ray last week and tomorrow I will know if the wires have migrated. I had lead migration happen a year after my 1st implant (for shoulder and arm pain) and I had to have the entire SCS replaced. I hope everything is where it should be! I am having problems with both of my SCS's running at the same time. I get stimulation going into my left leg and I do not have pain there. It is annoying. The programmers can't seem to fix it. Ugg!


  • Hope u get the tweeks out... Good luck!
  • Thanks, I am not going to give up hope! I have had 5 years of chronic pain and close to 20 procedures. I am willing to endure anything in the effort to feel better. The SCS is not perfect but for me it helps. Might not be as much as I had hoped for but a little is better than nothing. My first SCS was done about 4 years ago. It was working pretty well until I had my new one placed in June. Having two SCS's with the leads so close together makes it a bit tricky to program. My batteries are placed one on each side, against my ribs. I am very thin so they stick out quite a bit but are not too uncomfortable. My leads are placed in my neck and also in the back of my head. Both of my trials went very well. I had good coverage and high expectations. Unfortunately, the permanent implants do not function as well. Having said that, I do want to mention that I am still happy to have the implants. I am glad to have some relief, no matter how small.
  • I can only imagine the challenge of programming 2 stims that are that close together - and of trying to find the best balance on a daily basis. The only person I know with 2 stims has one cervical and one lumbar, so it's quite different from your situation. Hopefully as you continue to heal, you can get the 2 of them to work with each other. :)
  • It is quite common for a c-spine SCS to stimulate the legs and feet. I was informed of this by the doc and rep on separate occasions when I told each of them that mine was doing that. I actually find it to be quite a nice extra benefit. Since I have two leads, I get both legs stimulated simultaneously and I think that's what makes it a lot more comfortable. It's too bad that they couldn't get good enough coverage with your c-spine SCS to cover the occipital pain as well. I think I mentioned before, how my rep said that they are getting away from occipital SCS placements because they are getting good results covering it with a c-spine SCS now. I think you have scar tissue keeping your lead placement from being high enough or something like that. (at least I think I recall you mentioning that)

    Oh and Michael, just FYI, the company does bill for every time you meet with a rep for reprogramming. That is why they will always meet you at the clinic or hospital.

  • The national average for an outpatient or office visit for reprogramming per first hour is

    $55 for minimal complexity
    $162 for high complexity

    Hey if my tax dollars will help you, me and the others out, then I will gladly continue to pay them!

  • On oprah the other day I seen a lady with somekind of scs device that the two boxes were real small implanted in shoulder area and leads threaded to the front of her brain for weightloss.... Amazing... What will they come up with next??
    Isn't that wild??
  • I am so happy to hear from you. Have been worried. I knew that you were having problems gwtting your new stimulator adjusted just right.
    You said something I found very interesting. Your trial went very well but the permanent implants do not function as well.
    That is the same problem i have had but thought it was just in my mind.
    My trial went really well but my permanent implant is not working as well as it did during the trial. I thought it was because I was on strong pain meds during my trial and after my permanent implant my meds were reduced.
    But no...it just is not the same. I had a CT scan to make sure nothing moved and nothing has.
    I was told they use x rays to make sure they get the leads in the same spot. Yet it is not the same as during the trial.
    I am like you....I had very high expectations after my trial but the permanent implant failed to give me the same relief in my feet no matter what they did..I had it reprogramed twice, tried all the different sensations the rep had up his sleeve and nothing worked.
    I would love to figure this out. Why was my trial so good and my permanent implant so bad??? Are the leads the same in both the trial and the actual implant??
    Something is definitely different.....but what??
    I am so happy you do get a little relief. Some is better than nothing.
    Your batteries are on your ribs and not all the way down to your waist? That is also interesting. Someone else had their battery at their waist and they tunneled all the way to her neck to place the leads. That's a lot of tunneling up the spine isn't it?
    Best of luck to you. I do hope you get things worked out and you get the relief you hoped for.
    Patsy W
  • IIRC mcarr allowed her rep to reprogram her original SCS at the same time the new occipital SCS was programmed and she did not keep the original programming and the new programming isn't as good of coverage. During her trial for the occipital SCS she was still running her original programming.

    So the issue is not completely the same as having a successful trial and then the permanent implant not covering well. There's the issue of getting things reprogrammed and not saving the one that worked prior to that and being unable to recapture that coverage.

    Basically there are multiple issues going on here.

    For that reason, my rep always saves the previous programming and I can always revert back to that if I feel the new programming isn't sufficient. It is paramount to keep a good baseline with regards to your SCS programming.

  • The programming too. Last time they rewrote my program they took out the 'good" program and left the "not good" program and the new program. I quickly spoke up and said, "Huh, I liked the one you replaced".
    He said "no problem" and put it back in exactly as it had been!

    Like "C" I have coverage clear to my toes from a C-spine, and I only have a single lead!

    I do need to meet with my "real" rep soon. Just have some other issues to 'deal" with first.
  • Did not mean to duplicate your reply. I guess I need to read all replies before speaking (typing) my thoughts.

    (don't hate me because I am beautiful...)
  • Those are my exact charges (private pay, so I know these things) except it's for 30-minute increments instead of hourly increments.

    Gee gosh willies.. I never thought I'd find myself wishing I was average. =))
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