Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

nerve stimulator

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:36 AM in Pain Management
I had nerve stimulator implanted in july 2009 for five weeks I was great pain free. After fifth week, started having pain under left shoulder blade radiating down left arm. My pain management did trigger point injection, nerve blocks and now says there is nothing else to do ut have it removed. also took me off all pain medication. I am miserable and have no life since this . had to quit working. If they turn stimulator on now, it irritates my leg pain. the shoulder blade pain is always there. Don't know what to do next. scared to go thru another surgery to have it taken out. But two doctors now have told me not to leave it there cuz it may cause further damage. Hate to say it but the happiest I have ever been and most active was when I was on my duragesic patch, but wanted off medications. Now, dr wants it out but won't put me back on medication. As a RN and only 40 I have a lot of life to live, any suggestions


  • sorry you have such trouble. when you say stimulator is that the spinal cord stimulator? did they say it has moved? if it worked then it didnt cant they fix it. just wondering why they dont try to fix the situation rather than just yank it out....
    there are plenty of people on this site who have stimulators. we welcome you to the site and would like to give advice....take care....pete
  • I have yet to meet with my neuro surgeon again. They have x rays it has not moved, but scared to let them move it up or down just cuz the recovey is 8 weeks and if that doesn't work and thn they have t take it out. I guess right now i'm in so much pain from the old pain and now new pain I just don't know what to do. I have been worked on and over for 8 years now trying to get rid or help the SI joint disfunction I have and degenerative disk diease and two bulging disk, fusion 2005. I just feel ready to be done with any procedure. X(
  • I can't believe they would take out the stim and not treat your pain in any way. Why wouldn't they put you back on the Fentanyl patches? It makes no sense. I had a stim trial long ago but it didn't help me, but now I'm waiting to have a pump put in instead. It covered my leg pain better than the stim and my surgeon says it offers better coverage of my lower back pain. I also know what works for one won't work for all, even if we have similar problems going on. Could you go and get a second opinion? Maybe another doctor would be willing to do something. I'm sorry that you're left in this position. Take care
  • that they have thoroughly examined the electronics. when mine was inserted all i felt was my slpeen vibrating. with adjustments the buzz went to the proper areas. there have been cases of short circuits in the scs. to have relief for so long and then trouble tells me something is wrong with the system and if is diagnosed properly can be fixed. i understand your frustration. to have relief and then have it vanish is terrible. do a little complaining. ask for another technical rep.....good luck
  • Thanks ya I feel like my doctor basically abondoned me. I'm so upset and everyday is a struggle. I'm trying to find someone who will help. But losing a lot of faith in the medical field. especially being in that field. Iknow thing but the doctors don't seem to want to listen, they just make it seem like I'm drug seeking. I just want to know whats wrong and is it fixable.
  • have been thru three reps now they have adjusted seven times. the doctor thins it may be on a nerve. but he wants it out. but he as kinda washed his hands of the whole thing cuz he states in the last three weeks we have done everything to try and fix it. Haven't seen the surgeon yet he may have other ideas. but feel like I'm running out of time and patient. about to lose everything I have due to being off work so long
  • with the euipment they have now you would think they could move the led away from that area a bit and still give you good coverage. i hope the surgeon has solution. in the mean time hang around here for a while . i for one am not working. i spend tons of time on floor but like to chat online. lets the two of us just hope for better pain relief....pete
  • Thanks I'll keep ya updated
  • If your SCS was implanted in July and you had 5 weeks of being pain free, then you know the thing works for you. Where is it implanted? What level? What type of SCS is it? What type of lead/s? The more information you can provide us, the better we can try and help you out.

    I'm sorry that your PM doc is being so difficult.

    SCS revision surgery is not difficult for either the patient or the physician. Although they don't like to do them unless absolutely necessary, there are provisions for SCS revision. If the issue is only with the leads, then the IPG pocket is left alone and the healing is easy with only one site somewhat irritated.

    All I know, is if I were in your shoes and knew that I had had 5 weeks pain free before "something changed", I certainly wouldn't give up without a heck of a fight!

  • I second everything C just said..

    It's really annoying to see a doctor throwing in the towel at just over a month post-implant. If they're not willing to stick it out, they shouldn't be doing the SCS implants to begin with. X(
  • Ditto on what C and BW said. I suggest you get on the web site for the Manufacturer of your SCS and search for a new PM that will help you. Make as much noise as you can until someone listens.

  • Most of us here who have them have experienced glitches of some sort or another along the way. Its like buying a new computer. You have to install the necessary programs and familiarize yourself with the idiosyncracies of the systems. I cannot believe your PM would "want it out" after you just had it implanted. I would find another PM doc. SEE THE SURGEON. At least call him/her. Also, as has already been suggested, go online to the website of the company that made your SCS and have them help you. Welcome to S-H. Stick around. Susan
  • The thing he told me he is worried about is the new shoulder blade pain and the left arm pain. he is afraid that it might cause more damage. I have tried to turn the stimulator back on for my leg but every program just irritates it. the shoulder blade pain is there all the time now. I know it is a paddle and ANS is the company.
  • rn2care4 said:
    The thing he told me he is worried about is the new shoulder blade pain and the left arm pain. he is afraid that it might cause more damage. I have tried to turn the stimulator back on for my leg but every program just irritates it. the shoulder blade pain is there all the time now. I know it is a paddle and ANS is the company.
    Is your SCS for your c-spine or L-spine?
  • It is for lumbar pain but causing thorasic pain. it is implanted in thorasic area
  • If implantd correctly, a paddle lead will not migrate. It should be attached to your spine some way. It could be that the lead has broken or shorting out. I know my insurance company states that the docotrs cost of implant als ocovers the next 60 days of care. So , this is hard to say, but your PM might not want to do any further care because its basically free for 60 days. You know doctors better than most. They want $$$$ more than anything. The ANS rep can hook up your programer and tell if anything is malfunctioning with the system. But im with everyone else, if it worked great for 5 weeks, they should be able to fix the problem. They may have to lower the stim further down on your lead in order to get rid of the pain in your shoulder/arm. few lead points in order to move the stim further down the nerve roots. If they indeed placed the lead directly on your nerve the rep was not watching the xray very close during surgery. Like others have said get a hold of the Surgeon and possible find a new PM to fix your problems. you may also want to contact your insurance company and imform them of the problem. They paid alot of $$$ for this implant and most likely will get a hold of bother doctors to get it fixed. I'm saying this because when i say the bill for mine, i about fainted. $140,000 total.
  • :? If your $$$$ motivation theory is correct, why would the ANS reps bother with reprogramming? The ANS reps are paid on a commission at the time of implant. The reps do not receive any further remuneration for subsequent reprogramming of the IPG to satisfy the patient's complaints of inadequate pain coverage. However, we know from the testimony of many spineys here (e.g., Cherish22, Stockbroker, et. al.) that some of the ANS reps go to great lengths to satisfy their patients, not just immediately after the implant, but also months later as the scar builds up and new programs are needed. (On the other hand, Pete could not get a response from the lead ANS rep in his state on the day after implantation.)

    The doctor has taken a hippocratic oath to do what he can to help his patient, and to do no harm.

    There is something else going on here besides $$$$. :S
  • One thing I would wonder about and definitely want to confirm is that there isn't a new issue at a vertebral level above the lead site which could be causing the new pain and impacting the function of the SCS at the same time. While I don't have shoulder and arm pain myself, my understanding is that it typically comes from the cervical and thoracic levels, higher than the leads for lumbar/SI/leg pain would normally be placed.

    Brothers, since I know you're an information hog like I am... ;) The SCS companies/reps do get paid for subsequent programming sessions. I'm uninsured right now, so I pay out of pocket for programming sessions - $160 for the first hour and $65 for each 30 minutes thereafter. Obviously insured people get a little break on those rates, but it's still not a free ride.

    If memory serves me correctly, even Medicare reimburses around $100/hr for programming sessions. Don't stick me to that with a pin though, because it's quite possible my memory isn't serving me correctly. After all, it didn't serve me well the other day, when I put an egg down the sink and the shell in my mixing bowl. @) But I digress.

    With that said, I don't subscribe to the money motivation theory of neurostimulation, especially as it applies to the physicians involved. I always request itemized bills from my surgeries and while the total cost of my trial and permanent implant was quite high, my doctors got a very, very tiny piece of the pie.

  • You are both correct, any reprogramming session is a new charge with specific codes depending on the patient and situation. Now what some of the companies do, is they have a price structure set up based on whether or not the reprogramming session is done at the clinic or at the hospital. Whether it is complex or simple. At one time I saw where they also added a time frame from implantation into the mix, but that has since been removed.

    rplatt56, paddle leads can and do migrate given the right circumstances. They are less likely to move than percutaneous leads, however it is still possible for them to move, even if implanted correctly.

    The typical implantation level to stimulate the arms and shoulders, is to enter the epidural space between C7 and T1. The leads are then threaded upwards into the c-spine until the proper field of stimulation can be achieved.

  • Bionic Woman: That's interesting. Either Medtronics compensates differently from St. Jude, or my ANS rep gave me a bunch of #@$%.

    I had an hour-long phone conversation with the lead St. Jude sales representative in my territory. In addition to technical questions, I asked about the St. Jude compensation structure. He stated that he was paid solely on a commission basis when a St. Jude device was implanted in a patient. However, he does a lot of programming and reprogramming for patients, some of whom see him frequently, and he gets no extra compensation for those reprogramming sessions.

    If someone moves into his territory and asks for reprogramming help, he does it, not out of the goodness of his heart, but because he wants to keep a good reputation among the PMs in the area, and possibly pick up original implant patients from PMs that he otherwise would not get.

    When I told him that I was thinking of asking a PM outside of his territory to do my trial (and if successful, my permanent implant), he tried to convince me that there were good PMs in my area, and I told my objections to each one he mentioned. In the end, he said that if I went to a doctor in a different state, he would still do my reprogramming here when I came home.
  • This is your thread, and we are all concerned about your case. Do I understand correctly that you have a new pain below your shoulder blade and down your arm that you did not have before your SCS implant, and this pain persists when you turn off your stimulator?

    Is it possible that your PM has taken you off of pain meds because he does not want to mask your new symptoms?

    Your paddle tip should be at about T10. Is that correct?

    You say the X-ray images show that the paddle leads have not moved. Do they show how close the lead electrodes are to the dura?
  • the shoulder blade pain is there whether it is on of off. If I turn stimulator on now every program irritates my lef pain. I see the neurosurgeon today. I'll let you know what he states. Wish me luck. So tired of being in pain and feel I have done everything the doc have wanted me to do for 8 years now and nothings working. during that five weeks. I was still on morphine so not sure I guess if it was stimulator or pain medication working. I don't know SOOOOOOOOOOO Confused!!!!. Just want a life.
  • the shoulder blade pain is there whether it is on or off. If I turn stimulator on now every program irritates my leg pain. I see the neurosurgeon today. I'll let you know what he states. Wish me luck. So tired of being in pain and feel I have done everything the docs have wanted me to do for 8 years now and nothings working. during that five weeks. I was still on morphine so not sure I guess if it was stimulator or pain medication working. I don't know SOOOOOOOOOOO Confused!!!!. Just want a life.
  • If you were still on morphine after the implant procedure, what about prior to that when you did your trial? What was the same and what was changed prior to implant and post implant as far as your other meds and your activities?

    Curious to hear what your NS has to say today. Keep us posted.

  • Neurosurgeon said it has to come out. Do to new pain isn't worth staying in if they can't get rid of thoracic pain. haing a CAT scan tomorrow to see if possibly the titanium screws are causeing the leg pain cuz he may take them out to. seeing new pain management on thursday. the removal sounds pretty scarey but he made sence in stating if it is causeing thoracic pain I didn't have before then no reason to damage those nerves. He also thinks that the combination of morphineand the stimulator is probably why I had relief for those 5 weeks. once the meds stopped the stimulator wasn't helping enough to state it as successful. surgery scheduled for next Thursday.
  • i know for a fact that my insurance has been billed 4 times since my implant for $100.00 every time i'm reprogrammed. They have denied each bill but were still billed. I was not trying to say in previous post that ALL doctors are in it for the money. But like most bussiness there are some thats concerned with it. Watching what i type better in future, so as to not to sound out of line. Sorry if i stepped on any toes.
  • The company has it structured so that a bill will be sent out for each reprogramming session. The price will vary depending on if it's at the hospital, a clinic and the complexity of the session. Why your insurance denied it is more concerning to me. Are you on TriCare or a private insurer?


    Glad to hear that you have a proactive NS. I hope this all works out for you. Keep us posted.

  • RN2care4, it seems that your neurosurgeon and your other doctors are trying to give you the best health care they can. I do think it is a good idea to get a second opinion from another PM on how to manage your pain.
  • Haglandc, I have both private insurance and Tricare. I am currently a govt employee and have insurance through the FEHB. I now assume that Tricare is probably picking up the bills my other insurance did not pay. I was just super surprised by the cost but than again i really have never used my insurance except for the past 2 years. Guess i'm getting back some of those premiums ive paid over the past 13 years. LOL
Sign In or Register to comment.