advertisement
advertisement

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?

advertisement

Comments

  • jimandjrjimandjr Dallas TXPosts: 552

    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?

  • advertisement
  • 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: 552

    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)

  • advertisement
  • 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>

  • jbowerjbower wisconsin Posts: 173

    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

  • jimandjrjimandjr Dallas TXPosts: 552

    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? 

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

  • @JohnnyToledo it's not unusual to have your stimulation coverage change with body movement during the trial. Coverage after the permanent implant is much more stable and becomes even more stable after the leads scar into place. This will be true with SCS units from any company. I typically use my SCS with the stimulation set just below my ability to detect that its on. Still effective but not as distracting.

  • @Vince in Philly That's exactly what my rep told me (about the "scarring into place"). Good to know my rep was telling me the truth. What brand SCS do you have? My research shows me that Nevro HF10 is the best one, but the Medtronic one seems nice because you can have it at different settings for different postures.

  • @jbower What medtronic device do you have? I think i want to get it.

  • jbowerjbower wisconsin Posts: 173

    If your doctor has another brand to try I wouldn't think he would make you go through another trial.  If you went to another doctor that has the one you want  I don't know if you would have to go through it again.  Every doctor is different but that would be a good question to ask your doctor.

  • Ok. Thing is I trust this doctor, but I don't like the St. Jude unit in me right now. Very little relief. I'm going to see if my Dr. will do the medtronic or the Nevro and, if not, I guess I'll go to a different clinic. What a pain in the ass though! They're going to have to do another prior-auth for the unit with my insurance AGAIN and yada yada yada. Thus is the life of a pain patient :(

  • jbowerjbower wisconsin Posts: 173

    John, didn't you have your doctors appointment today?  Did you get to ask him questions about the possibility of having one of the other brands? 

    Can you tell me if you are with a clinic or a hospital?  The spine clinic I was going to was tied to one of our big hospitals so maybe that's why I had a choice of which one I wanted.  Most of the clinics though have their own preference.  

    My Medtronic module is the 97740 with patient programmer.  Personally I'm glad that I chose this one over the Nevro but that's just me.  I also have a Flowonix pain pump and while I'm still working with my doctor to find the right dosage this thing is cool.  I really like it because I don't have to charge it like my stimulator.


  • @JohnnyToledo - I have the Medtronic Intellis device. It does have AdaptiveStim, which is the capability to automatically adjust stimulation with changes in posture. However, I don't even use this feature. I turn it down when I lie down to go to bed, but other than that I just leave it alone. I have a cervical unit, and the stimulation is not effected by sitting vs standing. Not sure if this is different for lumbar patients.

    I doubt you would need another trial to get a different unit for your permanent implant. You would definitely need insurance pre-authorization for another trial, and that might be a challenge. Personally, I would want the doctor who did my trial implant to do my permanent implant.

  • So I did have my Doctor's appointment yesterday, and I told him that the "Burst" mode on the St. Jude was useless and that the tonic mode helped as much as 40%. I also brought in literature on the Nevro Senza unit and the Medtronic unit. He is a great doctor, and listened to every one of my questions, answered them, then asked me, "Anything else?" He is great lol. Anyways, he told me that the decision is mine as to what device I get and that he's never used the Nevro but that he's heard good things from his friends in other Pain Management clinics. He told me he would talk to a rep and get back to me.

    Meanwhile, I contacted a Nevro rep and I've been texting him back and forth with questions. In my St. Jude trial, I had leads in my cervical (which gave me coverage in my neck, upper back, and arms) and thoracic (which gave me coverage to my lower back and legs) areas. I wanted to make sure I could get the same coverage with Nevro, which seems like a stupid question in hindsight since it's just a SCS unit after all. 

    In the meantime, I will do more research. Since Nevro's "HF10" tech sounds similar to St. Jude's "Burst" tech, I am a little skeptical it will work for me, although the Nevro rep assures me that the tech is much different. I know that tonic worked best for me, so maybe I should just get the metronic unit afterall. I'm still not sure.

    But.... @Vince in Philly the AdaptiveStim is the only thing attracting me to the Medtronic device, so if you're telling me you don't even use it, then maybe I should go for the Nevro. The Nevro DOES have a tonic setting, so if the HF10 ends up not working at least I'll have that...

  • jbowerjbower wisconsin Posts: 173

    Well that's great news.  He is willing to help you out.  About the adaptiveStim I use mine all the time.  The reason being is when I'm standing I have it cranked up.  Now if I went from that setting to laying down it would get the shock of a lifetime.  So for me I set the laying down, sitting and standing settings.

    One thing I think may be a drawback is I don't think the Medtronic device can cover so much of an area that you say you are needing.  You would have to ask.  The Nevro for sure will cover all of that.  Like I mentioned though I didn't like the Nevro because I couldn't feel the stimulation.  Plus the thought of having to charge every day.  Granted the charging is shorter but still I couldn't handle every day charging.

    But at least you have options now which is what you were looking for.

  • I work from home. I'm basically bed-ridden. I am in my bed almost 24/7, when I'm not watching TV on the couch, so charging is not a problem. I'm pretty sure that any SCS will give me the coverage I need. @jbower&nbsp; Why do you think the Medtronic won't give me that coverage while the Nevro will?

  • jbowerjbower wisconsin Posts: 173

    Because the Nevro hits at a much higher frequency then the Medtronic device.  Because of that it can target a larger area then the Medtronic device.

    My Medtronic stimulator is for my sciatic nerve running down my right leg.  So I am only getting coverage on the lower half of my body.  If I crank it up I can get the stimulator to hit my left leg as well but it still remains in the lower half of my body.

    From what you mentioned earlier you need this to pretty much hit you entire body which then the Medtronic on wouldn't be the best option for you.  I would stick with the Nevro.

    This past year trying to treat my thoracic spine we tried a lot of things.  One of them was a second stimulator in my back.  Since the Medtronic device couldn't touch my thoracic we tried the Nervo.  Which didn't work for me but that told the doctor my pain is more from arthritis than nerve pain.

    But during the trial of the Nervo he said if I wanted to they could program it to hit both my thoracic and my sciatic nerve.  That way I'd this works then they can take out the Medtronic device and just use the Nevro.

    Now since you can't feel the Nevro unit that rules out the need for the adaptiveStim for different positions because you can't feel it anyway.  It really just comes down to preference.  I like having the adaptiveStim and having the option to feel the electric pulses along with charging once a week with Medtronic.

    If you would rather not feel the pulses, not having to worry about setting the adaptiveStim, just more of turn it in and don't have to mess with it besides charging more then you may want the Nevro.

  • I am making this comment for a friend!  He had is stimulator out in Jan. 2016 and it was working great he loved it! BUT in Feb. only 2 weeks after it was put in, he was standing up waving his arm directing his wife backwards when the stimulator electrocuted him and made him fall to the ground breaking his hip. Thank goodness his wife was there to turn the thing off! His doctor was shocked that happened!  Well because it reduced his pain so much his doctor put another one in now again this thing is not even working! Now he is back to square one in pain and in a wheel chair! Anyone have any in out about this! 

  • BDUBSBBDUBS New YorkPosts: 36

    I️ have researched all the brands  and chose the Algovita for my aunt whose very  happy with it.. My understanding is it’s the easiest to program and can deliver signals to 24 different 



  • Had anyone heard of this before? Electrocuted?

  • jimandjrjimandjr Dallas TXPosts: 552

    If turned up high enough, the hf setting can make my legs not hold me up. Since it is hf, it can feel like electrocution. 

  • @jbower When I used the St. Jude on Tonic (tingle) mode, it hit my entire body. It ALL has to do with the doctor and where he places the leads, not what kind of device it is (to my understanding). With your thinking, the St. Jude should not have hit my entire body on tonic mode (since it is not high frequency, but is tingle - just like the Medtronic). 

advertisement
Sign In or Join Us to comment.