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SCS Trial

davedave Posts: 860
edited 06/11/2012 - 7:37 AM in Pain Management
Got my trial Medtronic SCS this morning. So far it's providing a little relief. I'm taking it slow so I can get used to the feeling. I'm able to control the amplitude separately for each leg or together. I watched the video they gave me, so now I'm a little disappointed. I only have control over the amplitude and not the pulse width and rate. So far the stimulation is from my butt to my toes. I don't really like the stim in my butt right now. I will say, this thing is really positional, so if you go for a trial, be prepared for some tweaking as you change positions.

The lead placement this morning smarted a little, but I survived. Now my back feels like someone kicked the crap out of me.

I'll be more than happy to answer questions for any anyone planning on doing a trial and I'm not too proud to accept words of wisdom from those that have already been down this path.

Dave
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1

Comments

  • That is great news. =D> I hope it provides the relief you need.
    Yes....it changes every time you turn your head but the permanent implant is not as bad.
    "C" can provide you with great information about the stimulator.

    The rep can tweak it and put the stimulation just where you want it. Give it a work out and try to do the things you normally do.
    Best of luck!!
    Cheers :H
    Patsy W
  • I'm taking it real slow today. Kinda of dealing with having the crap beat out of my back. Guess Michael was in the room this morning and was getting after me for my comment in another thread. :)
  • They installed 2 leads.

    Dave
  • And Raise H#!!, Tell them you want more control so you can see what that thing will really do!

    Being sore for the first day or two seems like a pretty normal thing.

    I can't imagine having the butt stimulated....
    Well yeah I can.

    One of my first programs stimulated parts that while it sounds like fun, well...not so much!

    Seriously, give them a call about getting more control.
  • I hope your back feels better soon so you can get the full feel for the stimulator. Don't be afraid to call their office. My Dr.'s office also told me that they can potentially extend my 5 day trial if I need more time to feel it out, maybe this will be an option for you also if you need it.

    Please keep us up to date on how you are doing. Right now I am a go for 8 am tomorrow.
  • I have every intention of calling tomorrow. The butt stimulation is a little disconcerting. I've been running the stimulator on a real low setting. I've managed to extend the time between my doses for my drugs from 4 to 6 hours today. Not great success, but its a learning process.

    Dave

    P.S. There are some other areas that are being stimulated, just thought it wasn't pertinent.
  • dilaurodilauro ConnecticutPosts: 10,040
    at this time can envision it...
    But it sounds like good news from you with the SCS trial. I sure hope it continues for you.

    Think of it as a Redskins 15-3 season and heading off to the Super Bowl
    And for now, I wont even mention the NY Giants
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • My trial is for 7 days. I do not see me extending it any longer than that. Anything stuck to my skin drives me nuts. There's a lot of tape back there and I find it very uncomfortable. Hell, I don't even like to wear bandaides. The back soreness is just a minor nuisance and doesn't even compare to what my legs feel like all the time. The Rep is planning to call me tomorrow.

    Dave
  • That's just mean. Like pouring salt on someones wound. It's gonna be a long season for me. At least I can turn up my legs and butt and other stuff this Sunday and maybe enjoy myself.

    Dave
  • Well, I survived the night. Got a little Princess and the Pea thing going on this morning (slept on the external unit). I did leave the stimulator on all night at a very low setting. My left leg was real good (no pain) this morning but my right leg hurts like the dickens (this might be because of the pea).

    I'm at work right now and naturally not working cause I'm making a post. The plan today is get the Rep to give me a little more control over this thing and see if we can get the stimulation out of my butt.

    Question for you vets: What exactly does your stimulation feel like? When I have it set low, it's like a tingle sort of, but if I move wrong, the stimulation feels like I just stuck my finger in a light socket. I really want this to work so any advice is truly appreciated.

    Dave
  • Dave, the trial is a zillion times more positional than the permenent product. Actually, the permanent stim will be somewhat positional at the outset but after everything scars in, you won't have much of an ssue with positionality. The program I like is very much of a soothing, vibrating (some folks have called it in internal massage). Then, there is the feeling like someone has let loose with a nail gun in my legs. The difference has everything to do with the pulse width. C had made a suggestion to me when I was complaining that I wasn't happy with how my stim felt. I just printed her suggestion and showed it to the rep. Pulse width, though, seems to be key. Susan
  • Thanks for the tip. I definitely need to talk to the Rep this morning. I think the right lead has moved cause I can't get any stimulation in the part of my right leg that really hurts. It seems like the stim is just going around that area, kinda a strange.

    Dave
  • I'm curious, also, as to how the stimulation should feel. I had a trial a couple of months ago and the stimulation was painful. No matter how low or high, etc, or how many programs I tried, I couldn't get it to help my pain. I tried a tens unit at pt, which didn't help at all with the pain, but the stimulation was so nice and relaxing. Is the SCS supposed to have the same feeling? I, also, am curious about the "pulse width", which was never mentioned to me during my tial.

    Dave, keep us informed and we all hope you get this thing working.
  • I shut off the lead for my right leg. I just can't deal with the stim in my butt. The left lead seems to have better placement because it only stimulates below the knee. This is my worst leg and I am getting some relief there. According to the video, its possible to adjust the pulse width and rate also, so I'm gonna ask for the capability today.

    Dave
  • Talked to the Rep and we're gonna adjust some things this afternoon. I asked for the ability to adjust the pulse width and rate so I can fine tune this thing.

    Dave
  • Happy to hear the rep is coming to work with you. I am sure he/she can get everything worked out to your satifaction.
    Do take it slow and easy....you do not want to pull the leads out. Do as much as you can do without hurting yourself.
    I could not sleep with mine on...but that is just me. They can give you a night time program but again I was not able to use it. I have to have everything quiet for me to go to sleep. But as I said that is just me. Even small things keep me awake.
    Please keep us posted. We are all rooting for you and hoping this works for you.
    Good luck!!
    Cheers
    Patsy W :H
  • I'm sure the rep will go through your lead settings today to see if you can get better coverage and not stimulate your butt, Sometimes it just can't be done though. That seems to be related to the way we are wired, not a fault of the scs.

    I do find that the positional thing is better with the permanent, since you dealing with legs, I believe even with a precutaneous lead things will be much more stable than the trial. I have a cervical and I can go from the light socket shock to nothing just by rolling my head or tilting. I've mentioned on here getting some strange looks about the way I move my head sometimes. Paddle leads seem to be much, much more stable.

    With a week in trial you should be able to really tell how well it works or does not work for you. That's a good thing, the longer the trial, in my mind, the better.

    I'm like Patsy, I can't sleep with mine on, no matter how I set it, it wakes me if I move or roll over. Lots of people can just turn it on and never turn it off.

    Hope your trial goes better once you get some adjustability! Not sure why they did not give you that from the start!
  • Thanks for the info. As I stated above, I turned off the right side lead for now. I'm learning things that we should just not have to learn. Normally the pain in my left leg is so much worse than the right, but right now the left leg is barely noticeable. On the flip side, the right leg is so much more intense today. It's like they have swapped places.

    I suspect the Rep did not give me all the options cause he misjudged my pain levels. I'm usually a very up beat person and try very hard for this stuff not to get me down. I use a lot of humor to hide behind. Don't have a lot of humor today, I actually feel broken.

    Dave
  • I think that is normal...you know the pain in right leg isn't worse but feels that way because left is being taken care of by SCS. Your brain is not understanding what is going on and therefore you feel down. After a tweaking you will know more and if they can't get it exact you will be able to tell them...if you decided to do the permanent one, how it needs to be moved. I wish I had the right words for you, but I don't. Can you honestly tell if it is working at this point on anything? Do people around you see a difference in you? If so is that difference for the better or worse? I had a good trial other than surgical pain. I couln't roll at night not even a inch or I was stuck in that spot until someone pushed me back because the stimulation would cramp every part of my body. I told the doctor this and he told me my permanent unit leads would be placed lower. They are lower and I feel great...except today, raining here and that always makes me ache no matter what. So today is a little more pain meds. I can live with that. Can't imagine what today would be like if I didn't have SCS. Probably one of those days I wouldn't get out of bed and cry because I hurt so much and can't move. Life is so much better now. Just remember no everyone likes the stimulation or can tolerate it. Mine feels like a nice massage. Sometimes it is a tingle but usually a massage.
  • I know how you feel. When I was into my 2nd day of my trial, I was in so much pain I could hardly tolerate it. I didn't take anything for the pain because I wanted to know exactly how much the stimulator was helping. After trying multiple times to get it to work, my dr knew, as did I, that it was not going to work. Monib said her/his? stimulator feels like a nice massage...mine actually hurt and never felt like a massage. Seems if it felt like a massage it might help more with the pain. I know how difficult it is to want it to work and not have much success. Hang in there...maybe they can do some more programming that will change things for you.
  • The stimulator is not causing any pain. It's not that gentle massage or tingling feeling either. Even so, it is calming my left leg down. I'm certain with a little programming I'll be able to get the desired result or at least something close. If I hadn't learned anything about this, the trial would be a bust. I will say that the stimulator has completely shutdown the fasciculation (muscle twitches, I love big words) in my left leg.

    Dave
  • I suspect we all feel broken, deep down inside. I don't find my upbeat side often after 3 years off this.

    Well enough about me, maybe not, here goes.

    My trial did not go swell either, at first. The first 2-3 days I was not that impressed with the sensations of the SCS. Then as things went along I began to see that yes it was covering up pain and an improvement.

    My permanent does so much more than the temp. With one cervical lead they can program sensation from my shoulders clear to my toes, in BOTH feet and sides! I can give myself a total body massage with a few clicks of the remote. It's not quite as good as a real massage but it can be relaxing!

    They worked pretty hard to get my lead placed exactly right when the permanent was done, took three stabs to get the trial right! Anyway, I was told we spent some time getting the permanent one placed just right. I do not remember a thing.

    I hope some, any, of this helps.
  • I now have more control over the unit. The Rep also lowered where the stimulation was occurring on the right lead. It seams I'm wired a little different then most folks and have to be stimulated a little lower than normal. Always new I wasn't normal.

    Dave
  • You are in good company, I am also considered "abnormal". Funny how you wanted your stim lower and I want mine a little higher. Right now the stim in my feet is bugging me. Oh, if we could have only switched. LOL
  • I've had the afternoon and the evening to play with the stimulator some more. It's definately much more rewarding when you get to adjust all 3 values and create your own programs so to speak. I have no way of saving my results. So far I have created 2 laying down settings and a walk setting.

    LittleSurfer, it really softens the intensity when I narrow the band width and believe it or not lower the rate really low. If you go forward with the trial, make sure you think long hard about what they are giving you before you leave to try everything. I know I read that multiple times and I thought I was prepared yesterday, but I didn't do the pause.

    Dave
  • I'm a month and a half out from my perm SCS. I'm still positional, but it is getting a lot better. I leave it on 24/7, even charge with it on. At bedtime I turn it down to like a cat purring intensity, during the day it's like a pulse, and if I hurt bad, I call it jackhammer! If I jackhammer for a few minutes(even tho I feel like my finger is in a light socket), I can usually turn it down lower and have relief. I don't know why, maybe it resets my nerves or something, don't care why, just know it helps.

    Glad you are able to have the tweaking done in your trial. I hurt like heck the night of the insertion, too. It got better and then I cried when it was removed because the nerve pain was back in full force. The permanent one works even better for me.

    Good luck, please continue posting your progress in this thread as you did your fusion.

    Angie
  • Glad to hear that you can now experiment with the settings. One thing that I found that I have to do if I make an adjustment (more than just amplitude adjust)is let the SCS run with these new settings for at least a day before discarding it or deciding to keep it. Sometimes just a change to the stimulation can feel different, but not necessarily provide the relief needed throughout the day. With the trial SCS it's not as big of a deal, but when it becomes permanent, comfort is the A # 1 priority.

    "C"

  • Thanks for the words of encouragement. I opted not to sleep with the stimulator last night. So far, I have found that if I turn it up to high (amplitude), I aggravate what I call the hard pain in my leg. The only thing that has ever touched it is Oxycodone. The stimulator doesn't seem to get to it. It does reach everything else. The burning in my feet and the tenderness on the bottom of my feet are greatly reduced. The muscle twitches in my legs are completely turned off when the unit is on and come back when I turn it off. It's like a light switch. All in all, the SCS is providing some relief.

    Dave
  • You are lucky to have so much control. With the ANS Eon Mini you only have control of the amplitude. You can do a little balancing but everything else is lock and only the programmer can do that. I wish sometimes I had a little more control but this is the permanent unit and I don't want to go under the knife again. Maybe when the battery goes I will look into a different brand. My only problem is when the weather is bad. I can't seem to get the stimulation right. I don't know why that does it...but I have always hurt worse when the weather was bad. Guess they may have to set a winter, summer and raining programs for me. LOL
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