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Upcoming SCS - please share your SCS EXPERIENCE

TinaleighTTinaleigh Posts: 1
edited 01/16/2016 - 10:05 PM in Spinal Cord Stimulation
I am scheduled to have a SCS trial on 1/25. If the trial goes well, I will be getting the permanent implant. The area that I have issues with is the lumbar spine. I have had a micro-discectomy in 2011. That surgery lowered my pain levels to a steady 3-4 with occasional flare ups to maybe a 7-8. In September this year I had a severe episode of pain that hasn't left me yet. I have been given ESI's and SIJ injections. Nothing has worked. MRI shows protrusion at back of the L5/S1 area which is where my micro discectomy was performed. (PM doc says it was a crappy surgery) It also shows small bulges at L3/L4. There is some mild foraminal stenosis also. The next step for me is the SCS trial and possible implantation if I have good results.

I am asking if anyone is willing to share their SCS experiences good and bad with me. I did read a history/blog of kathyy which was very informative. I am just looking for additional experiences.

Thank you to anyone who is willing to share and a big thank you to the group and those who share so openly and detIailed with their experiences. I look forward to more reading and hopefully some responses.


  • LizLiz Posts: 7,832
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    Liz, Spine-health Moderator

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Tinaleigh said:

    I am asking if anyone is willing to share their SCS experiences good and bad with me. I did read a history/blog of kathyy which was very informative. I am just looking for additional experiences.
    Hi, I just finished my trial this past Friday, and I'm looking forward to getting the real thing. I had the St. Jude Proclaim Elite Trial unit w/Ipod remote. They mentioned to not stretch, and he showed by reaching down to touch his toes. In my case, the probe wire moved around a lot, most of the week, causing the SCS to stop buzzing until I moved again. I suggested to the Rep and Dr. to make more mention about the possibility of a lot of disconnects. It made me think twice about wanting to go with SCS. However, I assumed that, being that the wires broke skin surface, which could cause movement(?), as well as that the probe was still new and floating around, I didn't complain during the trial.
    They agreed that it was probably the above situations causing it, and that the Dr. recommended that I get paddles instead of the regular wire probe. It should be more stable inside.
    My chronic aches are from my lower back (already had L3-L5 laminectomy), and stenosis, down to my feet. The rep managed to get all of that covered and buzzing. I was quite happy with that.
    Keep in mind, one has to get used to the buzzing effect. I already had been using a Tens unit, so was familiar with my body getting electrified all the time. This SCS is a stronger, better feel.

    (all the above is my own opinion, and I'm sticking to it. :) )

    IMaBird @ jacksbanana.com
  • My trial was with Medtronic and was about a week, I noticed that I had pain where the device was taped to my back. I was able to do some everyday tasks, like going to the store (just the walking) and things that didn't involve stretching or anything I was told not to do. When they removed it I remember not getting as much relief as I assumed I would get, but remember the pain coming back almost right away. I got about 60% relief. I scheduled my surgery, which was outpatient for me, and waited. After my surgery I remember being in more pain after than intended, and I was back to normal about 2 days later, of course, taking it easy and following my restrictions. Now to this day, about 9 months later, I am still sore when I sit too long, and my spine is sore where the anchors are in. I am a bit bony so that could explain it and you can feel both the battery and the anchors. I remember after about a week feeling like I was over-doing it and relaxing. It took me about 10 weeks before I could get back even on the treadmill ( Dr cleared me) I still was nervous to do anything else. I was happy with my decision as I was able to do so much more with my life with less pain. I know you have had your trial by now, and I wish you luck!
  • Mrs_Step85 said:
    My trial was with Medtronic and was about a week, I noticed that I had pain where the device was taped to my back.
    I had the similar pain where the wires went in as well as being the big needle sticking it in you. I was getting around 75% pain reduction, when it worked. It cut out a lot, tilting my head down was enough to stop it, tilting back up, started it again. Still, I'm gonna get paddles and do it. I'm waiting to have a pre-visit with a surgeon mid Feb (taking forever!), and then set up for surgery.

    I had lost over 60lbs from pain/a lack of appetite (was 235lb 5'11", now high 160's at the moment). The pain Dr. said that I had a skinny body (that was REALLY NEAT to hear, but then again, I'm not eating, so it's not go good). I'm getting the non-rechargeable (getting about 5yrs worth of life versus 10yrs rechargeable) battery version, which is a larger battery, but can be implanted deeper.

    I'm back on my Tens unit, and have a love/hate relationship with it. It's the only thing helping me (heat does, some), but it also puts big bumps and a rash (and long enough causes the skin to get burned). I'm changing the electrodes daily. Tried cloth electrodes too, but they also will burn my back. This makes the SCS 'so much more desirable'. ! I had it cranked up 1/2 way, no heat at that point, but it was a strong buzz to block the pain. My original plan to kill the pain was with drugs, but nothing that they tried, helped more than 1/4 of the pain. I'm a programmer. I have to think, so heavy drugs were out. Laminectomy helped for several months, but then it all came back. SCS sounded so interesting, scary, but then, having experienced what it can do with the Trial test, and believing that I can get used to my bottom 1/2 of my body buzzing 24/7, it's my next best shot.

    Best of luck!
    IMaBird @ jacksbanana.com
  • I had mine put in a year ago...what I can tell you so far.

    The surgery itself....yea there will be some discomfort, but I would bet you have felt worse...no real worries there. All of my stuff was out the same day.

    How it works....I think that is going to depend on you.......and what/where the pain is digging into you.....mine was I would say about 40% good. And actually that is better then before so I guess that is a plus.

    I am on the skinny side and the implant is just above my belt line (I am male) You still can see the bump, and it is still sore....I don't tuck in my shit any longer (I work where a uniform is worn but get no static from my higher up's about being out of uniform) Every once and a while if I move in a specific way I can feel a ting back there....an odd feeling, I am guessing it is the leads moving around a little.

    Surgery was monday, I was back at work the next friday.

    If you have specific questions I can try to answer them.

    Would I do it again....I really don't know.

  • My thoughts on the SCS devices are incredibly bad if you read on............. 

    I went for the outpatient trial of the subject device in this
    discussion board and suffered complete paralysis within 1 hour (trying to get
    relief from a pinched nerve). The wire lead at the T8 area somehow created a
    blood leak (epidural hematoma) that traveled from the T5 and pooled around the
    L3. After all the emergency issues that follow such a problem, I now have some
    feeling after 4 weeks and trying to learn how to walk using a walker with extreme difficulty with lots of help and do other things completely
    foreign to my body. What will return for body functions or even walking for me is unknown.

    My DR had a 25 year perfect record of no issues with the Medtronic trial stimulator.

    Has anyone heard of this problem and possible errors of the leads
    in a simulator trial? My wife and I have searched and cannot find a like
    problem. Would like to know of others is possible.

     Any info greatly appreciated!

  • nofuss2unnofuss2u RiversidePosts: 19
    My mother in law had hers implanted May 2nd 2016, she loves it.  She had them set it to the No Feel Setting, she didn't like the sensation.  She said she foregets she has it.  She had back pain and surgery was not an option.  She  has the Boston Stimulator. She is pain free and said it has changed her life.  She can now do what she couldn't do prior to having the Stimulator.  She couldn't even get through cooking but now she can.  My husband has nerve damage down his leg due to a back injury.  He had three disk fused but he the never damage is terrible.  He has tried evertthing, this is his last option.  He will see the doctor tomorrow for his consultation for the trial stimulator.  He is looking at the Bost and the St. Jude. 
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