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Help! Tingling very inconsistent on SCS Trial

I got a St. Jude trial SCS placed in 2 places on my back (1 in my cervical and 1 in my thoracic). My Dr. said when they put the permanent SCS in, they will put 2 leads side by side in (2 in thoracic and 2 in cervical). So far, the trial has been a pain in my ass. Every time I turn it on, I will feel a slight tingling in my left arm ONLY, I will move 1/2 INCH, and then I will feel STRONG tingling in BOTH arms. It's the same with my legs. It's impossible to get consistent tinglng around all my coverage areas. When the rep programmed the thing, and I was standing up, we got it so that it covered my entire body (but of course if I moved it jumped). 

The rep and Dr. told me that once the permanent leads are placed, it won't move around since I will have 2 leads side by side and because they suture the leads in place (whereas they DONT suture them in the trial). Can anyone tell me how true this really is? Can I expect consistent coverage (for the most part) without it jumping from slight tingling to STRONG tingling at the slightest movement?

John Calderaio
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13

Comments

  • jimandjrjimandjr Dallas TXPosts: 465

    I get so used to the vibrations, I don't even realize it's on. My Algovita has tonic and high frequency settings too. Tonic can get pretty extreme when I want it to. HF setting is unnoticeable unless it's turned up real high. I do have occasions where I first turn on a tonic program and it's turned up too high and I have moved from an office chair to a recliner or to a bed. I quickly turn it down. My remote also has a red emergency button that turns it off. 

  • That's not what my problem is. My problem is that, when standing, I'll turn on my SCS and ill feel it in my left arm only, then move my neck slightly, and it moves over to my right arm. It's extremely finicky - much more finicky than just changing positions from sitting to standing. I'm talking about just a minor movement of the neck. The dr said its because I only have one lead in, and once theres 2 side by side it should resolve. I'm asking if this is true. Thanks! Also, my trial is with the St. Jude SCS. I am thinking about asking my Dr. about the Nevro or Algovita due to the HF setting. I have Burst mode on my St. Jude, which I also don't feel the tingling on (you're not supposed to, like the HF), but the tingling mode works better. Has anyone had experience with both the St Jude AND the Nevro or Algovita?

    John Calderaio
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  • What was weird about the trial was the feeling of my vibrating "taint"..... could NOT get used to it. I guess it distractede enough to call the trial a success with close to 80% reduction in pain. The tingling is just your spinal cord moving closer and farther away from the leads.  Learn what triggers the extreme tingles and turn down the juice a little.  

  • jimandjrjimandjr Dallas TXPosts: 465

    Is the St Jude rechargeable? My scs rep told me the non-rechargeable batteries are only lasting one year. I feel the rechargeable scs devices gives more power to my spine. Just my opinion. 

  • I got a Medtronic and it is rechargeable. I get about a week and a half to 2 weeks on a charge so far and I keep it pretty high to try and battle the additional pain I am in from my personal experience.  I LOVE the convience of having a pulse generator that is guaranteed for 9 years of service before needing replacement.  I have heard non-rechargables as to being in patients working 6 months to 3 years.  BUT no hassle of carrying around additional crap with you on trips and etc. (About the size of a dslr camera bag full or stuff)

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  • I already have 12 medications, 10 supplements, my medical marijuana, my vaporizor, and my nicotune vaporizer/ejuice to carry around with me on vacations, as well as 2 special pillows, and my memory foam bed topper, plus my TENS unit to carry around with me. I DONT want to have an extra charger to carry with me as well. I already hate going out of town because its such a pain to travel, so I dont want to have to charge mine. The rep asked me if I will be using the tingle setting a lot (as opposed to the "burst" mode, in which you feel nothing) and I said yes, since I feel it will be better for severe pain. She told me that if I use tingle on high charge 24/7, the battery would only last 1.5 years. Thats atrocious!!!!!!! Is she serious? I could deal with 3 years, but not 1.5. I could handle 2 weeks on a charge, but not daily charging (which is what my re-chargeble requires).


    Any input is appreciated <span>:smile:" alt=":smile:" height="20" /></span>

    John Calderaio
  • jbowerjbower wisconsin Posts: 33

    That's a lot John.  I also have a Medtronic stimulator and I love this thing.  It does have the two settings one you can feel and one you can't.  Plus I can change the settings whenever I want for more tingling or less.  That Medtronic one also has different settings for when I'm laying down to sitting to standing.  I set them all where I want them and never really have to adjust them again unless I wanted to.  The remote I have though is really handy.

    I charge mine about once a week. The charger is connected to a belt that I wear around my waist so I can turn it on and do what ever I need to do while it's charging.

    The trial I had was similar to what you experienced and are asking.  It was really touchy and the smallest movements would make it move or get really strong to where it would put me at a standstill.  They said the same thing that the permanent one will be more stable so those issues would go away.  Which was correct, I didn't have any of the same issues like I did with the trial.

    Also with the permanent one they were able to make changes to the settings where I would get more coverage where I needed it and it stays there.  Keep in mind also that they can always change it as your needs change.  The Medtronic one also has 2 different main settings as well where if I want I can toggle through one another.  Not the feeling part but permanent settings if I want more in my lower back or more in my legs.  I believe my rep said they could do up to 3 if I wanted them.

    I would recommend the rechargable one though as they do last between 8 to 10 years before the battery needs to be changed.  I'll take that with only having to charge myself once a week. 

    When we were looking at what company to use for the stimulator I had two to choose from.  The Medtronic one or the Nevro.  I didn't like the option on the Nevro because with that one you wouldn't feel the tingling at all so you really wouldn't know that it was on till your pain comes back.  Plus with that one I would have had to charge it every day because it is at a much higher frequency then the Medtronic one.  It didn't seem like a convenient option for me.

    That's why I picked the Medtronic one because of just once a week charging plus the option to have the program where I would feel it or not feel it.  Even though I have both options I always have it on the setting where I can feel it.  I just like the tingling sensation. Haha. 

    Not all places will give you the option of what company to use as some only use one or the other.  My current pain management clinic only will use the Nevro.  So keep that in mind that you can check with other clinics if you don't like the one your place now is offering.

    I hope that helps answer your questions.  If you need any more info from me just let me know.

    Take care and I wish you the best of luck.

    Jason

    Taking it one day at a time, that is all we really can do while living with chronic pain.

  • jimandjrjimandjr Dallas TXPosts: 465

    My docs told me which device I was getting. No choice for me. I hear this can last 10 yrs. Sounds good to me. That perm implant surgery hurt me real bad. Don't want to do that again for a long time if ever again. 

  • I'm going to ask my doctor tomorrow if I have options. I kind of want the Medtronic because of the positional change thingy, but I want the Nevro because it performed the best in pain studies (with their HF10 frequency). If not, I'm going to call around different pain clinics to find the one I want. Think I'll have to do the trial again if I go someplace else? 

    John Calderaio
  • If my doctor lets me get the other brand other than St. Jude, will he make me trial the new brand?

    John Calderaio
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