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Medtronics rep just dropped me from further adjustments

First, I have the leads not the paddle. That was the decision of Medtronics. The choice of the surgeon who was not a NS but a PM, was also that of Medtronics. Right out of surgery I was told "you will always have pain!" I was told, "there is no use in programming for the first 2 months because it has to scar in" "None of my people go off their pain medication" Before surgery the unit could do "just as much as the paddle" now after surgery "there is only so much this can do" For some reason I did not get great results until the last day of my trial. I have constant muscle spasm in shoulders and upper back. During the last day of the trial, I was pain free the whole day till the wires came out about 4 PM.. No one knows how to duplicate those results. So, she wouldnt program till I scared in and she will only program every three weeks. I have been unwilling to give up. The stim has helped the pain I get in upper back that I think is nerve. It does not reach the shoulders or neck. I am so close but so far away. The last programing she said "I just cant spend anymore time with you" "I cant keep seeing you every two weeks" I request help every 4- 5 weeks as we program 1 hour at a time. I just keep trying to find the nerve that made the muscles relax on the trial. So this last session, she gave me the option to program myself just as she would. Apparently, this unit only goes up or down the lead and amplitude is either high or low. And thats it! No programing for movement (sitting, bending, etc) I asked my PM BEFORE surgery if I could try Boston Sci trial with the paddle. He said he only uses Medtronic. I took several months to have the perm surgery (actually I had about 6 months of unexpected dental work). My gut said get a consult with a neuro. Im now in PT. It's time to get a job. Im giving myself a while and then going to talk to Boston Sci. If I have to change PM's I will. This thing really can work!!!! I just regret the shortcut AND the reps attitude before and after. I will say there is no way I would let them take it out. BUT, I asked all the right questions and just feel that presurgery was a good sales job. AND, there is not another rep who programs anyway! I just need to get this off my chest. I will learn the system somehow and keep trying to move that stim up about 3 inches. Im 3 inches short! Go figure.... Thanks everyone. There were no promises....however, Ive met people with pain in the exact same place as myself and they have great coverage with the paddle. Just saying.....


  • RickilalasRRickilalas Posts: 559
    edited 02/08/2014 - 8:59 PM
    This was hard to read. I can't believe some of the stuff said to you.
    Your doctor should have been more involved. A PM can do a trial and some do the implant with perc leads to keep the money in house. The better PMs do the trial and send you out to your surgeon or one they work with. Perc leads can and will work. A paddle has advantages but it's harder to place.
    I would be asking for another experienced rep to program you a few times. My God I have six medtronics reps I can call and already have two BS reps who I can call.
    It is true that the first two months or so isn't real good to reprogram but it can be made better. I would ask for a supervisor to program you this is just crazy.
    Some reps have little to no medical backgrounds. This is to important for a person like this making decisions on your treatment.
    This is just so wrong Terri don't sit back and let it go.
    My second unit was just days before Thanksgiving and I have seen the surgeon three times already just for follow up. It's working great. He isn't happy with paddle placement but I have coverage and it works. He will move the paddle if we need to. Scar tissue made a simple 45 min procedure into 3.5 hours and they had to pull out and settle for what we had. That's another long story.
    My PM saw me on Jan. 1st because I needed him. Maybe I am just lucky with my medical help but there are doctors out there that do care and follow through.
    Well make them get with it and get you another rep or two.
    You should be happy now not being cut off. I was told unlimited reprogramings for the life of the unit. If you have 16 contacts on your leads, they have about 44,000,000 combinations she can do. I bet it's her and not the leads even. You have perc leads your PM can even move them and reposition if he is any good. This is just unreal.

    Good Luck
  • pandqmamappandqmama Posts: 175
    edited 02/16/2014 - 4:52 PM
    You should be able to address the spasms without having g to rely on the stimulator. I struggle with spasms due to scar tissue from the surgery prob made worse. I'm giving pyhical therapy and massage another shot.
  • these muscles have been in chronic spasm for 6 years and are disabling. This the the reason for the scs implant to begin with. Hoping to find the nerve(s) that inflame the muscle to cause the spams. The stim appears to have the nerve that made me homebound due to spam in my mid back. I cant get the stim to reach the traps in the upper shoulder. I had NO pain the last day of trial. So Im frustrated! The PT sends the nerve thru the roof....but I'll keep at it.
  • Hi
    I'm sorry to hear you suffer with chronic muscle spasms. I too have suffered with these for years but the intensity varies from month to month. I have had three major failed back surgeries and have been in constant pain since 1998 and starting Boston S trial for SCS next month for full implant the month after we don't have the same insurance issues in the UK.
    I have permanent micro twitches in the muscles all the way down my legs. These then build into vey severe muscle cramps. Over the years what I have found helps is:
    - ST Johns wort ( started these as alternative to a kind of anti seizure drug which left me like a different person mentally and I mean literally!)
    - high doses of potassium and magnesium supplements I mean 2000% of the RDA
    - mineral water with high potassium and magnesium content (in the UK Volvic is great) if not I find things get VERY bad in hot weather or after exercise ie after sweating a lot

    Hope this helps...
  • This is the first time in 2 car accidents and 6 herniated disc, the SCS, the medication and the PT has me in a decent place. Still pain, but in the background for much of the day. It's been years. This makes me feel I have my life almost back. I really wish I would have gone with the Bost Sci SCS...What would my pain management do if I had????
  • Having both a medtronics unit and a Boston unit I find little difference in performance. Boston programs faster but both work about the same for me. Medtronics gives you replacement remotes. Boston sells you one for about $1200.
    Implanted right and programmed right you can't go wrong with either of these two units.
  • I got the leads, the BS paddle would have given me proper coverage.
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