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Requesting more comments on SCS, TENS, and intrathecal pump

optimistooptimist Posts: 546
edited 06/11/2012 - 8:52 AM in Chronic Pain
I have been through two lumbar fusions now, anterior and posteriorly approaches, only to have more leg/foot pain from the surgeries added to my previous back pain. I have been offered additional surgery, but I'm not convinced additional surgery ("we can try...") won't do more harm than good as opposed to the way I was previously convinced of the need for my surgeries in the past. Being single, without any source of help or care to sustain me through another major surgery (and no income) and not living in an area of mass transit system is somewhat contributory to this decision as well. My pain management treatment has run the full range of the usual antiseizures meds for radiculitis, trials with Cymbalta, Lyrica, Topomax, Elavil, every muscle relaxer you can name (except benzo's like valium), every opioid except dilaudid and fentanyl, (I should mention I have also tried the NSAIDs that consistent have given me bleeding ulcer with every trial), and every series of injections known to pain management. Although I haven't "maxed" out on opioid dosages, my pain doctor doesn't feel comfortable with any further dose escalations as I am still driving, and I do have a relationship with him that I trust him on his decisions regarding medications. And yes, I have done tons of ice, heat, PT (more than my insurance covered) and accupuncture; the latter without detectable significant improved of pain. I can no longer afford massages. I've had counseling in the past to accept "coming to terms with my life with pain, and loss of my former identity and life", and I know this is required for SCS as well. I find I can only spend one-two hours on my feet without hitting those "8's & 9's" (negated if even 15 minutes of sitting precedes the standings). Needless to say, when you are single and without help, that one-two hours gets used up pretty quick with a load of laundry or doing dishwashing, let alone food shopping. So, its time to seek other options for either SCS or intrathecal pump.

I know this topic has come up before, but with limited responses in those threads I've searched so here I go hoping to get a larger reply pool:
1. For those with SCS, were you on a TENS unit first, and if so how did they compare? I have had a TENS unit in the past, but honestly the number of times per day I have been "shocked" (causing accidental outburst that are not my usual demeanor) despite covered control dials, along with the fact that it only seems to work when my pain is at the very lowest in the am makes it less useful. I can't honestly say I am thrilled about an internal version of this (which is my impression of what an SCS is") implanted in my spinal cord if it will only relieve a portion of leg pain given on my les than so-so results form TENS.

2. Did anyone out there have control of lumbar stabbing/burning back pain with the SCS as well leg & foot pain? Was it complete control of your pain or did you find yourself still supplementing with oral meds?
My doctor is very much against intrathecal pumps, although I have done some research on my own. It seems that many people with intrathecal pumps still have SCS's or still require supplementation with oral drugs.

3. Has anyone seem to do well with SCS trial, but once the permanent devise was implanted seemed not to do so well? If so, how may days was your trial? I have heard of trials from 3 days to 15 days.

4. Was anyone made worse by either permanent implantation of the SCS or the intrathecal pump or have regrets about having these? Anyone else have trouble finding a surgeon willing to do a intrathecal pump?

Thanks in advance to any who replies to this thread or pm me.


  • I had a scs it did not work for me,it was taken out when i turned it on i would fall to floor,it shifted
    almost paralized me,if you get a chance for a pump i would get that look for pat on here she has one she can help you.iam now on fent patch that workes better than the scs did Rick
  • I'm so sorry that you are now at this point, after two fusions. :o(

    As you know I DON'T have a SCS so I can not offer any answers directly.
    I can tell you from others I know and even from what I read here on SH many people with the SCS are still on pain meds. I see many people in my PM Doc's office with the SCS and they are all still on meds. Many say its helped with one or the other, back pain vs leg pain or the other way around. I'm sure there are many who have great relief, and they are not sitting once a month in pm office.

    You are extremely bright & astute with your pain issues and its good you are researching.

    The trails, from what I understand (I have been offered the SCS twice & was given the "low down") are normally 1-2 weeks and to proceed with permanent implant you need to have a fair amount of relief.

    Yes, being on your own, I can only imagine, is a huge factor and honestly I thank god for my family as I could not get through life without them. I am so very sorry that on top of suffering, the fending for yourself is a massive hardship and of course must be considered in your course of treatment. You have been through so much already, I just pray you get some pain relief!

    I hope you get some good replies that can help you with your HW and ultimate decision.

    Keep me posted please.

  • Howdy Optimist (love that nick by the way!!)

    No SCS here either, but a regular user of TENS and EMS. I have a TENS, and too a dual unit TENS/EMS and love them. I play with the various band widths and pulse rates to find what works. Funny, my neck isn't so dang fussy, but my back, another story? Why I have no clue except *maybe* due to the way the nerves are bundled down there verses dedicated in the neck??

    I am an L2/3/4 lumbar for the TENS and honestly, my electrodes are not in the usual places per the placement charts. I use a bit of the mechanical pain to dictate where I put the leads, as Lyrica keeps much of the nerve pain in check. I use the EMS side more for my back, and the TENS for my neck if that makes sense? I hope more chime in with their experience - especially in the SCS side of the house.

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • a PM .PLEASE READ IT..it has good information regarding TENS
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • While some like to compare the SCS to TENS, my experience has been completely different. I have used TENS extensively over the years and found it provided relief for some lower back issues. When used for my cervical issues, it only served to exacerbate them. So based on the common misconception I nearly bypassed on trying a cervical SCS. I have found the cervical SCS to be very different from TENS. Since the stimulation is being driven with more precision than TENS, it can easily focus on the target area without overloading others. TENS seems to be more like flooding an area with anesthetic hoping to disrupt the pain signal, whereas SCS is target specific.

    When you consider the depth of the two signals and what point in the nerve pathway you are reaching, it is easy to understand why SCS is far more successful than TENS for certain pain patterns. It's hard to know on a case by case situation just where in the pathway the signal needs to be introduced. That's why a trial is so important.

    I think you will find that there are many folks who have gotten an SCS who have eventually cut back either dramatically or completely on their narcotic pain meds.

    I am not one who likes the risks associated with intrathecal drug delivery systems and I feel there's still a long way to go before that therapy is as "patient proof" as SCS is.

    Sorry you are still having such a battle. Best wishes.

  • I am in a similar situation as you. At 18 months postop, I think I have come to a plateau as far as my recovery. I have severe pain daily, and limited mobility which makes taking care of myself alone very difficult.

    My new PM doctor has been encouraging me to have a SCS as well. I have decided that the risks outweigh the benefits for me. Potential infection, potential need for more surgeries, worsening disability, continued need for pain meds, potential need for MRI's in the future due to multiple spinal issues, are a few of the reasons that lead me to this decision.

    The Britsh Pain Society has recommendations on the SCS which helped me to make the decision for myself.


    Hope this helps. Good luck.

  • I have had an SCS and I now have a pain pump. An SCS does not work for everyone. All I felt was tingling on top of my pain.

    I now have a pain pump. Not all Doctors like them for some reason and will bash them. Sure they come with risks just like any implant. But there are thousands of happy pain pump users.

    It was the very best thing I could have done for myself!! I have had mine almost a year and have had no problems with it.

    With a pain pump you can cut way back on your oral meds. I know I have. You can't campare a pain pump to an SCS. They are nothing alike at all.

    If you want to know more you can PM me and I will be happy to answer any questions you may have about them. You can also read my very long post under the Pain Management forum. I must warn you it is very long with over 130 comments and over 4 thousands reads!! But you can read the good, bad and ugly about pain pumps reading it.

    Good luck to you.

    A happy pain pump user
    Patsy W

  • I'm disappointed in some of the responses assuming that if you have an SCS you should not have to take any pain medication. An SCS is just another tool in the toolbox to help you manage some of what you feel. If you can reduce your pain by 50% and meds capture a little bit more, is that not worth it? There are several members within this forum that get up to 80-90% relief.

    My biggest concern for you is that your Doctor's are still suggesting more surgery. Do you still have stability issues in your lumbar area? A stimulator will have a very difficult time masking pain or will eventually fail if you've not dealt with the mechanical nature of the problem.

    I've had my implant about a year and a half now. My leads are implanted at the top of my lumbar area rather than the thoracic area. It works fairly well for my pain below my knees to my toes. I still have some back pain, but in the grand scheme of things, its minor in comparison to what I feel in my legs.

    The only way you can determine if SCS is a valid therapy for you is to undergo a trial. Only then can you make a truly informed decision.

    If you have other questions, feel free to PM me and I'll do my best to answer any questions that you may have.'

  • Can anyone give me an estimate on recovery time from the permanent intrathecal pain pump. I will be having a trial implant within a couple months. When I had my SCS it was a brutal recovery. It was near 10 weeks before I felt 1/2 human. My PM DR told me I would have to have home health come in my home for a short while. Has anyone had one of these implanted along with the SCS less than a 1yr apart?

    Thanks in advance!

  • I had a trail SCS and it relieved 80% of my pain. AFter the perm implant 3months later the unit did not adequately cover the pain. ANd I am now back to levels at 9-10 + daily...Pain levels differ in every person and their tolerance to pain. I have always had a very high tolerance to pain until I was DX with RSD and now it has been horrific. I fought so hard "not" take the different narcotics and fortunately for me I am allergic to numerous pain meds out there. SO I am limited on what I can take. The SCS has helped my RSD in my foot but when it started ascending through the leg and into the lower back I thought I knew what pain was in my foot ...let me tell you the pain is more excruciating in the back/hip vs foot. I know I was hoping to cut back on the pain meds, but found the break though pain was just as strong and dealing with RSD has levels of severity caution should be taken when expressing concern about others pain. I for one am a nurse and No. 1 rule is "ALL PAIN IS REAL" and never questioned. I have great empathy for people experiencing any type of pain.

    My doctor is so cautious when it comes to doing surgery on me especially when it comes to my back and I have such respect for him. He does all the trial implants and then I get sent to another orthopedic surgeon for the permanent implants. Every doctor I have ever seen has always stated my RSD is very severe. (when you have state doctors agreeing you know you have a severe case)

    My leads are implanted as high into the T8 down..I have a total of 3 leads one for left leg/right lower ext/lower back. But for some reason since the surgery the lower back has never worked. My settings are pretty high. I have a Med-Tronic unit and have not had any problems with it yet. I can adjust the unit up/down as high as I want. Currently it is pretty high due to the cool weather.

    So I am pleased all in all with my SCS I am just so worried about getting an intrathecal pain pump. How much my life will change? and will it make me feel drugged all the time?
  • Yes, I had a pump implant a few months after I had my SCS removed. Recovery time for me was easy.

    I spent a few days with a sister and then came home where I live alone. I do suggest you have someone with you for a couple of weeks.

    You will have the same restrictions as you had with the SCS. No bending, twisting or bending. I used a reacher grabber if I dropped something

    A pain pump works really well for RSD.

    Please PM me if you have any questions. I have more information that will help you.

    Best of luck.

    A happy pain pump user.
    Patsy W
  • For input & above comments.
  • Did your RSD occur after your SCS? What did they say was the cause of the RSD?
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