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Spinal Stimulator

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:25 AM in Chronic Pain
I have had two major spine surgeries and numerous other pain related treatments. I am now reduced to being able to walk to and from the car, bathroom, couch, ect... I have decided to try the spine stimulator. I would love to here some feedback from those who have had it done.
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13

Comments

  • Hi joyride and welcome to the group!!">image
    I'm sorry to hear about the trouble you are having and the pain that you have experienced. I know too well how debilitating that can be. I was once in the same boat as you are in. Eight months ago, I had an SCS implanted and it made a HUGE difference in the amount of activity I had previous to the SCS. Before, I was basically going from couch to bed and back again. I got to a point where I was unable to take care of any of the household chores and I wasn't taking care of myself. I looked horrible. Some days I didn't even get dressed. It just took too much effort to get dressed, just to have to get undressed again a few hours later. Now I am back to doing the chores here (most days), I attend all of my daughter's school and sporting events (she's a senior), and I take better care of myself. It doesn't take all of my pain away, but it reduces a bunch! So much so that I have a life again.
    If you have specific questions that you would like to ask, send me a PM and ask away! Good luck!
  • Hi - I'm in the same position as you. I spend the majority of my day reclined because that is the only thing that keeps my nerve pain from flaring. The pain I feel without a flare is a 6 out of 10. A good day is 5 out of 10.

    I will be getting my SCS trial on December 4th and cannot wait. I passed the mandatory (for my insurance and clinic) psych evaluation and we are moving forward. My problem is acute and chronic S1 nerve damage. Were that under control/diminished, I can only imagine the life I might get to return to.

    I have seen the negative stories, the not so successful experiences, but I also realize that the people who had wonderful and fabulous experiences have gone on with their life and may not necessarily spend time on health boards. This encourages me. I am very positive and hopeful for this to help. If it weren't for the nerve pain, I would be up and having a life. I get occasional back pain, but that is when I overdo, bend over when I'm not supposed to, etc. I am also sure I have very weak core muscles.

    If I get the SCS and it works for me, I will have a period of time where I have to recondition my body. I won't physically be able to go to the mall for 8 hours because I've been forced to be too sedentary for 3 years. But I'm willing to put in the effort.

    I will definitely keep everyone posted on my experience and how it goes. December 4th at 1:30 PM cannot get here soon enough for me!!

    Hang in there!!
  • Well the good thing is, you should be able to get a lot of information from the personal stories that we have all shared. Here are links to threads that contain the info I believe you are looking for.

    http://www.spine-health.com/forum/pain-management/spinal-cord-stimulator-advice-please

    http://www.spine-health.com/forum/pain-management/need-info-scs

    And here's the link to the Pain Management Forum where you will find numerous threads discussing spinal cord stimulators.

    I'm one of the ones that actually loves mine and has not had any problems. 6 months since implant.

    "C"
  • Hello Joyride:
    I'm a retired pain specialist and have put a fair number of stimulators into people with severe pain, especially after back surgery.

    Not everyone liked the stimulator at the trial placement. Those who liked the trial loved the permanent stimulator.

    I strongly recommend you go through the trial placement and give the stimulator a chance. I think you'll be delighted with it.

    Ken Noel
    DocNoelsBlog
  • Wow thanks for that input on this stimulator.. I have had questions about it myself and wondering if it is something that would might work..

    Can you please explain to me how the trial rin works and how long you have to have it in the trial run before you will know if it works? And how much success has this procedure had on patients? Why would a patient not like the procedure and how would it be painful instead of helpful? On the next PM Dr appt we are going to bring up this and some other procedures and see which is best for us.. Thank you

    Kelli
  • Since I haven't had the trial yet, I can only tell you what they've told me. My trial will be for 5 days. I have already spoken personally to the programmer that has been assigned to me. During the procedure and after, the programmer will be in charge of setting specific programs on my SCS to address my pain. She said if I have to go in to the office every single day to get my programs adjusted, she wants me to do that. The trial is just that - to see if they can figure out a way to address the pain.

    If there is a 50% reduction in pain or more, then I will qualify for the permanent placement.

    Some patients cannot handle the vibrating/tingling/buzzing nature of the stim, sometimes it is placed incorrectly and will cause pain in other body parts (I've heard shoulders, etc.). Other patients just don't experience enough of a difference to make it worth going through the permanent placement.

    I've also heard of people who go for the trial placement and immediately cannot handle it/pain is increased/pain is not touched at all and they decline even the trial.

    But many people feel immediately amazingly better and get really sad when the trial is over and then have to wait for the final placement! lol I'm hoping I'm in this category!!

    I've heard of trials being as short as 3 days and as long as several weeks. The concern is not to get an infection at the lead site.

    That's about all I know at this point. I really appreciated talking to the programmer who will be personally invested in getting my pain under control if they possibly can. Makes me very hopeful!!

    I'm having a really bad pain day and have had a pretty bad pain week. I am counting down the days, the hours, the minutes. It can't get here soon enough!!
  • Thank you for the insight on what you have learned and found out on this. I do however hope it works for you with your pain.. I know it is one of our options to take. Please keep us informed on how your doing with your progress.. Good luck..
  • Trial placement of stimulators varies depending on who the physician is doing it. It varies from a couple of days to a couple of weeks. I've had a couple of patients who really cried when I pulled out the trial leads.

    Spinal cord stimulators are really one of the best things to come along for severe chronic pain.

    I just saw a report of a stimulator placed with the wire midline in the neck producing excellent relief for fibromyalgia.

    It is well established for back pain, especially in people who have already had spine surgery.

    Ken Noel
    DocNoelsBlog.com
  • Hi, Dr. Noel, I was wondering if you can help me out with a few questions, I saw my pain specialist for a EMG today, and he varified that my sciatic nerve pain is coming from L5, I have a L5-S1 herneation. He said many surgeons wont do a surgery on the L5 nerve..But they would S1 Can you tell me what kind of surgery that would involve, IF they would do it, My doc said something about a fusion, since i had a microdiscectomy at L4-L5 4 years ago, but that was all he really said, I am just curious because he said it is the "outside nerve" and S1 is the central nerve. So, i don't know what kind of surgeries are optional for that? I had so many questions, but such little time to remember to ask all of them. Also, he said if they WONT do surgery that they could try a nerve stimulator, but i have questions about that also, it blocks nerve pain, but will it also get rid of the numbness associated with the sciatic nerve pain? Thankyou so much for what I have read already, I just haven't found much on what I am specifically looking for!


    The information provided by members of Spine-Health should never be considered as formal medical advice. It is recommendations based on member's personal experiences only.
    This can vary from person to person, so do not take comments as medical rules

  • dr noel
    i have had a trial scs put in at c4 been in a neck brace every since. havent picked up anything heavier than a bottle of water. after 3 days the lead slipped down to T1 vertebrate. they put the leads in in a permanent fashion for the trial. is it really hard to get it anchored in the neck?

    Jimmy
  • I have an appointment w/ a pain management specialist at Mayo Clinic in Jacksonville FL in Jan to discuss this spine stimulator thing. I don't have back pain, but sever Gastropareisis (somach paralysis) w/ severe pain for the last 18 years. Have any of you heard about this stimulator helping non-back pain? I'm not a candidate for other surgeries, such as the Gastric Stimulator b/c the pain. My pain occurs episodically lasting 4-10 days at a time every 4-6 weeks. Is this stimulator only for constant pain? I can't figure out why he wants to discuss this; it doesn't seem as though I fit the criterion . . . Thanks for any input, Kristin
  • I used to get epidurals for my chronic pain (got some relief) but the insurance company didn't want to keep paying for them, so they sent me to a doctor that treated me with drugs (got good relief) but now that doctor sent me to an associate that claims I'm "opioid resistant" after a 2 min. evaluation, and told my insurance company that I must have a spinal stimulator and stop all drugs.

    The insurance company seems to agree that paying the doc to install a stimulator is better for me than paying $20k+ in drugs per year times x number of years. I think the insurance company is just interested in the lowest cost option.

    I just hate being pushed through the maze with virtually no input in my care, just so these doctors can make money on me.

    I live alone and I need a basic amount of mobility or I'm done for. I'd rather exhaust all options before any more surgery.

    I'm always suspicious of simulators, but do what you feel is best for you.


  • As a patient, you have a right to refuse any care you don't believe is in your best interest and nobody can force you to accept a treatment without your informed consent. Period.

    If you really don't want the stimulator, find your voice and exercise your rights. If you need help, do some searching for a patient advocate in your area to help you make your voice heard.
  • I'd be very careful about purposely saying or doing anything beyond simply refusing to consent to the SCS. It'd be very easy to answer a few strategic questions in a way that helps you "flunk" the psych eval; however, those results become part of your record and will be referenced repeatedly, affecting your ability to obtain many other treatments, including opiate medications.

    Seems to me it's a lot smarter to be honest and forthright with your doctor(s), so that you can move on to other realistic options.
  • Over here in Australia, I havnt heard of them using them for backpain...

    I have a Medtronic sacral nerve stimulator permanently installed to contol bladder function.. The professor who did it was only doing them for bowel problems but he considered the options and trialed it for my bladder..

    After a 2 week trial it was taken away and my bladder went straight back to how it was...I have had mine now for 3 years and it only needed adjustment after my first spinal surgery upon where they found I have sympathetic nerve damage.

    Good luck and take care
  • As usual Bionic woman is right! You are in a very unique situation if you are being forced into an SCS. There are so many steps involved in getting one. I see zero chance this will happen if you do not want it. What location are you in that this can even be suggested?
    I had to get a second opinion then my PM had to say yes, sounds good. Next I had to do a Pyschiatric evauluation to see if I was a candidate and understood its ramifications and that it is not a "cure', but rather a treatment. Then my PCP had to fight for an approval for the trial. I am on day 4 of my trial, and anywhere along the way I could have easily stopped the process.
    If you truly have an understanding of what you may be refusing then do so. It should not be hard at all to remove yourself as being a candidate.

    I will say, that I woud instead suggest that you be fully aware of what it may offer you. Do the trial and see if it even works for you. If it does not work than you are not a candidate anyway. They can't force that on you!

    My trial was somewhat difficult to get a lead placed and while it was somewhat painfull it was not as painful as one of my ESIs was that did not work out well a couple of years ago.

    There are some things you can say to help get removed from the "list" be aware that once you get yourself off the "list" you may not get the option back.
    I'm not trying to sell you on an SCS. I think you should give it a whirl. But, the idea of someone forcing you to have something you do not want repulses me. That is not something I think should be allowed to occur!
  • It seems to be about a 50/50 procedure. Ive seen people who it has helped greatly and some people who it had not wrked at all for. The good thing about it is that it has a trial phase and is completely reversible. Good luck.
  • joyride, I too am contemplating the Spinal Stimulator procedure. I was given a DVD about the whole process and it said the best one could hope for is a 50% reduction in pain. I'm sure everyone has different results.

    My Pain Doctor said it is not a cure but a way to lower the amount of medicine I take. If you have the procedure done, please post your results. I would be very interested in your opinion.

    This is my first post on Spine Health (although I have read many posts). Hello to everyone and many thanks to all of you who post your experiences.
  • Welcome, There are quite a few posts down in treatment and mind and body. look for SCS posts.
    (I may have made one or two of them myself)

    I have just completed my 8 day trial yesterday and have a tentative "permanent" install scheduled on April 20. I Quote around Permanent because I feel that is not a true statement, even the long term rechargeables are expected need replacement every nine years or so. For me and many others they are an effective treatment. PM or post most anyone of us who have or are going through the process.

    Again, welcome,
  • Hi-I had a spinal column stimulator implanted 8 months ago.
    and it worked wonderful until a few months ago and it seems like the pain is creeping back really bad. They reprogrammed it a month ago and seemed to help for a few weeks but lately it is not helping at all. Have you experienced this ?
  • I am waiting for my Insurance Co. to approve my trial stimulator. I am both very nervous and excited about this.
    I do know it is not a cure but more of a trade off. One sensation(pain) for a different sensation(tingling) Because I have 3 seperate places i have pain(my low back, my thigh, from a pinched nerve and my feet and legs below the knees) the tingling will be from my waist all the way to my feet. Will I be able to stand that....I don't know. Wish they could target these places but they can't...so be it.
    Good luck to you. I prey it works for you.
    I have sat up as long as i can so must head back to bed and hope tomorrow is a "good" day.
    Hugssssssss >:D<
    Patsy W
  • My pain Doc. just called. He will be doing my temp implant next Thursday April 23! I am nervous and excited about this journey in my life.
    Will let everyone know how my trial goes.
    Hugsssssssss >:D<
    Patsy W
  • Pat , my stimulator worked absolutely fantastic while it was there. I wont have another surgery for the reinstall but have no hesitation recommending the stim for you.
    I loved it and will miss it.
    Good luck and best wishes
    Jim
  • Thank you for the good wishes.
    You have had a very rough go of it and you are in my thoughts although I do not know you.
    Good luck to you my friend.
    Patsy W
  • glad to see you will be doing the trial soon! If you get into the trial and question its effectiveness at all, ask for a longer trial! I have posted here before I am very glad my doctor left mine in place for 8 days! No showers was kind of nasty, but the extra time to really get used to it and experiment with it was really helpful to me! By the time it was over I knew without a doubt I wanted one!

    I'll be at my PMs on the 23rd at that time. We will be deciding where I want my battery etc, etc! May 4th is that date!
  • Thank you for the great tip. I will keep that in mind and will ask for a longer trial if I am still undecided after four days.
    You know, I would never had thought to ask for something like that at all.
    Everyone here are just great and I am so happy I found this site.
    Left on my own I am sure I would have been afraid to have this implant.
    I am so happy rhat your wait is over. Good luck. You will be in my prayers that all goes well.
    Happy tingling..
    Patsy W
  • I wish I had a better memory left, I think it was Stockbroker who used my suggestion to get another day or so out of her trial not to long ago! It feels good to help people!

    I found myself questioning what I was really getting out of it. Mostly due to the fact I tend to overthink things, running my mind around in circles @) some others have mentioned the same thing as the first few days you may be preoccupied with back issues, usually not horrible, but some people have some cramping and with mine he manipulated the skin and muscles to get the lead to track right so it was just plain sore. Once the back calms down you really can see what the SCS does.

    Some people know instantly. Others are like me and need to really over analize things! With my long trial and then the return to pain when the SCS was removed, I really know it is indeed for me! May 4th....hurry, hurry, hurry!
  • Boy do I understand when you say.....May 4, hurry. hurry, hurry!!
    When you are fighting pain, two weeks seems like 2 years!! Our pain does not go sit in the corner twiddling it's barbed thumbs while we sit and wait for help now does it?
    When I told a friend I was going to try the "stimulator" but that would not be for 2 or 3 weeks yet, he said.....Oh that time will fly by, just wait and see, it won't be bad at all!! I said nothing but..HAH...nothing is farther from the truth. You are still in as much pain as you ever were.Most nights you are awake from the pain.
    I agree with you my friend. May 4, please hurry, hurry for Wrambler.
    And for me....please make the next 5 days fly by!! That's when my trial starts, please work for me and for Joyride if she decides to go with the SCS implant.
    Hugsssss >:D<
    Patsy W
  • Tomorrow is the day I get my "stimulator" trial! I am excited and nervous. I am fortunate to have one of the best Doctors in the state doing my implant.
    Wish me luck. I prey the "stimulator" works for me.
    Patsy W
  • My doctor dicussed the SCS as being an option after most everything else has been unsuccessful, but after seeing my last MRI he told me that my spinal canal was to narrow to thread it thru since I have had an ACDF two years ago. Has anyone else heard of this? I told my workers comp nurse what he had told me and she said she had never heard of that.
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