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Going through SCS Trial

Dale002DDale002 Posts: 16
edited 06/11/2012 - 8:30 AM in Pain Management
I wanted to let you guys know of my experience with the SCS trial.
I had the Meditronic install on Monday.
So far I have received some relief,However The system is limited to the area that it cover. I have issues from my neck to my lower back so my pain is tipicaly from my head to my toes.
This stimulator requires constant adjusting in order to move the cover area around. It also has a tendency to go into runaway mode. One minute it's Ok and the next it's so intense that I can't handle it.
My option and we all know what options are. Is that this system would do great for some one that may have pain in only one area.
If you have pain in different areas of your body this System will require you to move from program to program.
I only have coverage from lower back to my feet.
I have to decide which part hurt the most and set the stimulator to help that area.
Once I have releive there, I switch the program to cover the other area. This goes on back and forth all day.
The only meds that I have been able to stop taking are the ones for break-thru pain. That's because I crank the stimulator up to cover that area when the pain hits.
I have my turn on all day. As soon as I turn it off or change from one area to another the pain returns quickly.
Is you guys have any ideas that I can try please feel free to post or pm me.
I really want this to work but,I know that I will not get the perm. Unless I receive 50% pain relief.
Right now I'm not getting that.


  • Have you spoken to your medtronic rep or programmer?
    The trial is not as "good" as the permanent version. I had many concerns like you to. Thankfully we only had to cover my right shoulder.

    The leads that are placed for trial never have time to scar or stick in place and the sensation varies. A lot! Once the permanent one is in, I am told after 6-8 weeks it becomes much more stable!

    I did an 8 day trial and it was a long time for me to get used to it. Once I did, I was very sorry to see it go.
    I had my preop visit today and the permanent SCS on May 4th.
    I have been miserable since the trial came out, MISERABLE.

    No, it's not a perfect world, but I guess we have to decide for ourselves if it is good enough?

    Give the others a few days, I suspect they will chime in soon!

    Run a search and read!
    Ask questions, I am at work, once I get home and get my daytime pain calmed down I can answer more stuff!
  • I have very complex pain patterns that my Medtronic SCS is covering quite well. What the doc did was place two percutaneous leads and one is somewhat lower than the other to allow coverage of the pain in a larger area. There are areas that are covered perfectly by the stimulation and there are other areas that are marginally covered. Depending on the activity I engage in, I will modify which area I cover stronger.

    One of the things that the Medtronic rep can do is change the way the contacts on the leads are firing. Typically they start out with a very sharply focused output, however the contacts can be made to spread the stimulation out further at the sacrifice of driving it deeper. For the first 10 months I had mine set very focused and just recently I had it reprogrammed to spread the stimulation field. It made a world of difference!

    As Wrambler said, use the trial to the fullest and keep in mind that it is in no way as stable as the permanent one is.

    Good luck to you!

  • Glad to hear you got it adjusted. I know we want perfection. I sure did! As I got used to it I realized that what we want and what we need often do not match up!

    Try turning the scs off from time to time. It lets you know what it is doing! I got the best lesson in the that once it was gone. My pain was all refreshed for about 3 weeks. It finally calmed down, some.

    Being able to reduce or stop breakthrough meds in and of itself my be reason enough to go forward. You have to make the final choice though! If you read and I guess you said you have you know that most everyone says they do not intend or promise that we will be able to get off pain meds.

    Funny thing, I just realized not once today did my new PM doc never said I would have to stop pain meds once the SCS was in place. I hope my condition allows me to, but we will see.

    No need to worry to much about how your pain compares to others. All of our pain is personal, none of it is comfortable. We all deserve to get as good as we can!
  • I just came back from a visit with the Medtronic Rep.
    She was much nicer than the one I seen afer placement of the trial unit.
    She was able to get the stimulation to come up almost to my waist.
    Right now I feel better than earlier today.
    I also took 40mg of Oxy. However I have been able to stay of the break-out pain med.
    I hate that one.
    It gives me more of a high than pain relief.

    I have been reading alot on this forum and I'm very familiar with a bunch of you guys pain issues.
    Some here have it much worse than me.
    I hurt but,I've been lucky that my insurance company has been taking care of business.
    Some here have the pain of there injuries and the one of having to deal with insurance companies as well.

    Right now with pain med. and stimulator my lower leg pain it's about a 3, 5 to 6 after walking or on my feet for more than 20 minutes.
    The rest of my back is at base which is 6 at idle and 7 to 8 when walking,sitting or standing.
    This got to be better than nothing. (I know it is ).

    I guess I will have to take it one step at a time.

    For those that are worry about the trial SCS hurting when installed. Do not give it any though. It's almost painless.

  • Well said Wrambler.
    I do Agree.
    No one has mention anything about comming off the med.
    It was just me thinking ang hoping.
    In reality that would be the least of my concerns.
  • I have a SCS with a paddle lead at T11-T12 for lumbar problems & neuropathic pain in my legs & pelvis.

    I am very pleased with the result & would do it all again if I had too. I feel there is a problem with the SCS & expectation of what it will actually do & I have had issues in coming to terms with the fact it is not a cure.(I know I was told this, but there was a little secret part of me that hoped it would be a cure & every now & again I wish it had been!!) - psyc evals don't allow for that little secret bit of you!!! Anyway - my pain is about 60-80% better so I can't complain. I have reduced my meds by a 3rd & feel loads better for this. I am reminded if I do too much that the pain is still there but I am adapting to it.
    One thing I would say is be very careful where you have the IPG placed - mine is a pain & I am having it resited - it sticks out, it hard to charge & hits my ribs when I sit against it. As it is here to stay I want it to be right. I wish I had thought about it before.
    I hope the trial gives you the outcome you need - it can be great when it works. I have had mine reprogrammed three times & I now have 3 different programs. One of them gives me 4 areas covered at the same time! Drains the battery though!!!Mine is on 24/7 & my controller is always with me!
    Good luck with it
  • Well I'm working it.
    I went to the pm today and instead of taking it out, decided to reprogram it and try it thru the weaken. I'll take it on a full test run during the next two day.
    I'm not ready to give up.

    I get no stimulation in my lower back unless I crank the unit up to where my legs are no longer being stimulated but in pain.

    My pm said that this may be as good as it gets.
    When I was in the waiting roon as spoke with another patien that had the trial during the same time as me and was there as well for removal and he said he has the same issues as i.

    I'm now wondering on this pm. His been recomended by many as being one of the best in the area in the installation of this units.
  • Keep in mind that neurostimulation is primarily for radicular pain. By the simple design of it, that's what it targets and anything else is just gravy.

  • Indeed, I find my coverage "reversed".

    That is why I was glad I kept it so long in the trial. When I started the trial I also had to get over my back pain from getting the lead "right". It seems when I fractured T3,T4,T5 and they healed I ended up with a flattening or even a reverse dip in the area the PM wanted to place the lead through to my cervical area. So the firts time he tried he could not even come close to placement. So, new hole and try again. It took him while on hole two and finally he got in the proper place, or so he thought. They hooked me up to the stim and activated it. Nope, all I got was muscle contractions. they fooled around with placement, still not luck. He pulled the lead and went for hole three! Finally on hole three he got the correct stimulation.

    I just got through writing the above and have no real idea why I did? I'm going to leave it for detail, but not sure why?

    Anyway, what I found is/was that I get really stronge coverage in my hand and up my arm. It gets less intense as it gets to mey shoulder and my back. Ideally what I would like is the reverse! My pain lives in my right shoulder, shoulder blade and upper arm. Bummer. For the first few days of the trial I was in back pain from placement, thats why I wrote that! Once I got through the back pain from placement I was concerned and not sure I liked the strong coverage on a hand that does not really hurt. But, as the days passed I learned for me that the coverage I was getting did indeed help a lot! I found that one a bad day I could increase the strength and get coverage over the shoulder. Again, not ideal. but, better than a pill or so it seems. I could actually get all the pain blocked though the strongest settings leave me with poor use of my hand. Only till I turn it back down.

    I have talked to my PM and he wants me to remind them on implant day and we will try to get more back coverage. No promises but hey I have come to realize we are not wired to allow us a perfect fix with the SCS.

    Sometimes we have to take what we can get.
    I'm glad to see the extended trial is possible, for me it made all the difference! I'm really sure I'm doing what is right for me right now!
  • Before you totally give up on coverage to your lower back, talk to your rep (or a Medtronic tech supervisor) and your doctor about using their Specify 5-6-5 paddle lead and/or a transverse tripolar configuration.

    My doctor told me at the outset that using that arrangement was the only way I'd get good coverage of my lower back/hip/butt problems and he was absolutely right. My trial didn't touch my back at all, but my permanent implant can wipe out anything from my bra line to the bottoms of my feet.

    There are several articles recently published (in the last 2-5 years) about the benefits of transverse tripolar stimulation for people who have both low back pain and leg pain.

    I can't seem to locate my whole file of articles, but I had one bookmarked on this computer. It's a case study, so only one woman involved, but it does a pretty decent job of explaining TTS and how it's different from standard arrangements.


    One other note about that article and most others - since it takes so long to go from study to publication. The article was actually written before the approval of tripolar paddle leads, but published after. Medtronic has the Specify 5-6-5 tripolar paddle and ANS has the Lamitrode Tripole 8, 8C, and 16C, which are all tripolar leads.

    In the article they accomplish tripolar stimulation pattern using 3 percutaneous leads, but now most doctors just use a paddle lead with the electrodes arranged already, so it's not quite as complicated as it looks. :O

  • Is possible with the percutaneous leads. In order to accomplish this with greater success, two leads are set to fire in conjunction with each other. I get good stimulation in both shoulders, arms, hands and fingers with two percutaneous leads. If I isolate the leads then I get primarily stimulation of my arms and hands and my scapulas are left out. Another trick the rep can use to get better coverage of the shoulder area, is to spread the stimulation out along the leads instead of using a more focused stimulation. This won't drive the stimulation as deep, but will spread it out for a greater amount of coverage. Then by simply increasing the amplitude of the signal the coverage becomes very comfortable over a very large area.

    So if your rep/doc can't dial it in on the first few tries, don't give up on the fact that it can be done.

  • Thanks, that is why I am going forward. I have faith we will find what I need with some time spent tuning. As it has been many, many poor, painfull days in a row now, even half a glass of stimulation will do.

    7 days to go, pray for clear weather and now storm fronts.
  • Trial ends today. I have very mix feeling about the scs.
    Where I got stimulation, I got relief.
    So the system does work.
    After 4 visit with the medtronic rep he has fail to be able to cover my lower back,butt and hip area.
    I think that going into a perm. would be a gamble as to what pain relief I will get.
    I'm very upset in a way.
    I was hoping that this would at least relief some of the pain. I knew that it would not removed most of it but,the doctors never said that coverage would be an issue.
    Anyway I kind of now thinking about the pain pump as I been told it can cover a more general area.
    As I had said i have pain from my neck to my feet, maybe something like the pain pump may give me better coverage.
  • It is really important to not have serious reservations as to whether or not the SCS is a good option for you. Please discuss it with your doc if you haven't already and make sure that you keep your eyes wide open. Maybe he can hook you up with a pain pump trial to use as a comparison. Either way, I sure hope that you are able to get some decent relief soon!

  • I discussed it in detail with my Doctor.
    We all thought that it was something to try before going to the pain pump. He told me up front that the chances of getting stimulation in all my pain areas would be a challange.The only way to know was to go thru the trial.

    I just more than double my pain med from 40mg of oxy to 120mg last month.
    I'm having a really bad time dealing with this med.
    So they will not increase them any more.
    Next stop would be paim pump trial.

  • My pain is almost exclusively in my legs and it is neuropathic. I do get pain in my low back when I go shopping or cook one of my fabulous gormet meals (hence do a lot of standing--no meals recently) but I never would have gone to the doc to complain about back pain. It was the leg pain that bothered me. When I had my trial, the first couple of days, I wasn't sure I cared for the "pins and needles" feeling. It was almost more irritating than soothing. I called the ANS rep and he reprogrammed some stuff. I find the slower frequency (Am I getting that right?) was more soothing and massage-like. I also knew that a 50% reduction in pain (which is typically considered a success) would not be good enough for me to proceed. I had a number of problems where my "gizmo" didn't work and, as time went by, realized it, indeed, was helping. A lot. Now I have my permanent stimulator and I have my life back. I can tell you that the permanent is better than the trial and some of what you decribe--those sudden surges--are due to the "positionality" of the device when everything isn't scarred into place. As wonderful as my stim is for me, I would be reluctant to go ahead had I not been confident this was really going to help me. Who needs another disappointment. I'm sorry you did not have better results. Susan. p.s. Feel free to PM me any time if I can be of help. I got my permanent stimulator (paddle leads) on 4/08/09.
  • They pulled the wires for my ANS SCS trial one week ago. :''( The reason I weep is because I just had a small taste of how great life with the stimulator will be and then they took it away!! X( How cruel is that!!
    I guess I am lucky (if you can call being in chronic pain lucky) My worse pain is in both my feet and legs below my knees. Like stockbroker, I too have pain in my lower back if I am on my feet to long but I can live with it. My pain was easy to target with the stimulator. I had 5 setting but one was all i needed to use and I also knew instantly that I wanted this device. I did try all the settings but kept returning to the one that targeted my feet and legs.
    Gone were the sharp stones I have been walking on for years!! Gone was the burning, stabbing pain from a pinched nerve in my thigh. My knee pain was also gone!!
    The pinched nerve and knee have nothing to do with the leg pain.
    The pain in my legs is caused by scar tissue around the nerve root of L4 & L5 where I have rods and screws.
    Now i must wait 2 weeks for the place on my spine to heal before I can get the permanent implant, My Doctor said waiting would lessen the chances of infection setting in.
    I want the permanent implant NOW but wait I must. It is not easy and the time drags!!
    Good luck to everyone and thank all of you for your wonderful support and advice.
    Hugssssssssss >:D<
    Patsy W
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