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SCS trial/ implant...please help

dea-lynnddea-lynn Posts: 152
edited 12/28/2014 - 4:18 AM in Spinal Cord Stimulation
I am scheduled for a SCS trial on 1/22/15, I had a L4-5 microdiscectomyand foraminotomy on 9/17/14 which "failed". I have done pt, but had to stop due to lack of progress and pain. I have also had 2 injections one on 12/10/14 and the second on 12/26/14 both of which have caused an increase in my pain both down my leg and my back. Both of which I did a lot of prior to surgery without success. I have also had a repeat MRI which showed the surgical changes as well as new disc bulging at the level of my surgery and L3-4, L5-S1, and T10-11-12. My surgeon says the new bulges and damage are not pressing on my nerves 'enough' to warrent repeating the surgery since I didn't have decent relief the first time and that I should consider having a spinal cord stimulator implanted to help block the pain signals. (I feel as though I should say that I saw three different surgeons before I found my surgeon because he was the only one that would go in and do anything other than a fusion), and when I asked him what would happen if this did nothing both him and my PM dr said we will cross that bridge when it comes. I am sort of type A and need to know my next steps, so I am asking, does anyone know what my options will be if this fails? Could I be looking at a fusion, and if so should I push for this now? I am currently taking Tizanidine twice a day, MS cotin 15mg twice a day, and Dilaudid 2mg every 6-8hrs with some relief but not signoficant. My initial injury was on 10/11/13.
Thanks, please share any experiences related to SCS.


  • sandisandi Posts: 6,343
    edited 12/28/2014 - 4:34 AM
    What was the condition that you originally had surgery for? When was the last time you went to physical therapy? What things did they have you doing during pt? Did you try aqua therapy?
    Injections typically cause flare ups of pain for a week or two post injection, until the steroids used start working.
    Spine surgery isn't done for pain relief, it is done to correct an anatomical problem or a nerve compression issue.
    What kind of pain are you having now? Is it in your back or is it neuropathic in nature? Or a combination of the two? What else have you done to try to manage the pain? What are you doing now to manage the pain? Are you doing any home excercises and stretches to help ease the pain and walking as much as possible to help strengthen your spine and muscles?
    What other testing has been done to try to determine what exactly is causing your pain? A CT scan, myelogram, emg test?

    The spinal cord stimulator trial is done to see if you get a pain reduction of your nerve pain of at least 50% or greater........it is not meant to ease your back pain......some do get some relief in their low back pain but it is not a normal outcome. If you do not get at least a 50% REDUCTION in your pain, then it is not supposed to be implanted. You also can not have MRI's from the point you have the implant put in.......so that is something to consider. Even though if the unit fails, once those permanent leads are scarred in, removal of them is usually not possible, so having the leads remain , even if you were to have the battery removed, still means no further MRI's.

    Sometimes, having too many procedures in an attempt to hurry things along can wind up making recovery worse, and prolong it.
    Having repeated procedures, interferes with the body's recovery process.

    If it were me, I think that if it had been some time since my last attempt at physical therapy, I would try to return there first, and give myself some time to really work at recovering. Sometimes, you need to work through the pain to get the benefit of physical therapy. Perhaps adding some aqua therapy into the program might be more beneficial than undergoing another surgery and implant.

    We can't guess whether or not fusion would be considered, and honestly, if it were, without a solid reason for doing it, ie, a structural issue that needs to be repaired, I wouldn't consider undergoing another surgery in hopes that that might be the magic fix......I would stick with conservative measures and really work hard at them for a few months to see if that helps first......then perhaps medications to manage the nerve pain.
  • dea-lynnddea-lynn Posts: 152
    edited 12/28/2014 - 11:12 AM
    I had surgery for a herniated disc at L4-5 with nerve compression. By the time that I finally was able to have surgery my lower left leg was almost completely numb. Prior to surgery I had 3 MRIs, I also did PT for 3 months (which was pretty intense and I had almost regain all of my strength in my leg, but ended in July and by September my leg had atrophied again and was numb), I also had two epidural steroid injections on the left side and 2 nerve root blocks one on each side. Before surgery I was taking Tizanidine 4mg BID and Dilaudid 2mg BID which was not relieving my pain but my PM dr at the time did not increase my meds or change them. I have also been taking 1800mg of Gabapentin BID but that was for prevention of migraines; and 200mg of Celebrex BID to help with inflammation but it did nothing.
    Since surgery I have done 2weeks of home PT which was followed by 8 weeks of PT at ATI, which is where I was before surgery. However, PT after surgery was more restricted due to pain and even though I was 'toughing it out' and working through the pain, when I would come home I would have to take my muscle relaxer and pain meds and lay down, because I was in that much pain. I asked about aquatic therapy but since I had progressed off the walker and was able to walk unassisted (while extremely painful) I was told that it would probably not be beneficial. so after 8 weeks with minimal progress (my leg strength has returned but the pain is too severe to move on to more aggressive treatments) both my therapist and surgeon decided that I should stop PT for now until the pain is better controlled.
    I had a 4th MRI on December 4th which showed disc protrusions at both L3-4 and L5-S1 as well as scarring and new protrusion at L4-5(surgical site), but my surgeon said that there wasn't enough evidence to have me go through another surgery at this time since the first one didn't produce the optimal results.
    As for my pain management thus far: I am still taking the Gabapentin, and Celebrex(once a day now for Celebrex), in addition to the Tizanidine 4mg BID, Dialudid 2mg Q6-8H, and have added MS Contin 15mg BID for long term relief. I have also had 2 epidural steroid injections on the left side both of which have caused increased pain. Both my surgeon and my PM dr have recommended the SCS and the trial is scheduled for 1/22.
    I have not had any other test done as far as CT or EMG. I do also have spinal stenosis in the Lumbar spine and always have trouble with LPs.
    I told the surgeon that I didn't want to wind up having a fusion unless it was necessary, but that if it was necessary I would prefer to have it now rather than attempt to go back to work and reinjure my self( I do not want to deal with all the WC bs again). He said that we would cross that bridge when and if it came but he hoped it wouldn't come to that, and that I wasn't returning to work until the pain was better undercontrol anyway.
    As of right now I do my home PT program when I can and I try to walk as much as possible but any more than 10-15 mins(unless I 'push through and ignore pain') causes severe pain and spasms. I have trouble sitting for more than an hour, and doing a load of dishes causes severe pain and spasms. I have a home TENS unit that I use nearly every day and I am waiting for a brace that was ordered by my PM dr. Most people think that I am doing well, but they don't realize that most things that I do are forced and extremely painful. I don't like taking pain meds constantly but right now I have no other choice.
    thanks for the advise.
  • sandisandi Posts: 6,343
    edited 12/29/2014 - 6:58 AM
    the spinal cord ( thecal sac)? Were they able to do the myelograms ? I wasn't sure.......
    It could be that the reason you didn't get improvement is that the stenosis is compressing the canal, or if it is in the foramina, that there is a compression that hasn't show on the imaging ( MRI or CT scans).....
    I was put in the position of being told to get a scs stimulator too, after my first and then second surgery failed......I did some research, went and talked to the doctor, but ultimately decided that it wasn't the right time.......I knew that there was something else going on, and it took me awhile to find out what it was, but ultimately I was right.
    I just don't like seeing things like that recommended, too early for people......and it does have it's downsides.
    Ultimately, though it is your decision and you have to do what makes it manageable to get through the days.....
    I wish you the best and hope that it helps.
  • I haven't had a myelogram. Maybe I should ask for one. I have received the brace that my PM dr wants me to wear, soim going to try that. Ii have ro get a psych evaul next week before my insurance will approve the trial, which is not not scheduled and is being rescheduled. I know that my surgeon opened the foraminal space at the surgical level during my surgery. I don't want to jump into something too soon either, which I believe is why my surgeon wants to see if the pain can be brought under control before trying surgery again. I just don't want to fall back in the same cycle of injections, pt, and pain meds that don't address the reason for the pain and only masks it.
    I just get so frustrated because prior to my injury I was working full time as a nursing assistant/tech, and before that did about 15 years of competitive cheerleading. And never had any back issues. Then one night after working for weeks super shor staffed, I went to turn a patient that weighed maybe 90lbs, with the bed at the apprioate height and using proper technique and bam my life comes to a halt. Now I can't even walk 20 mins or stand for 15mins without severe pain. Sitting for long periods especially hard chairs or car seats cause pain in my back and hips.
    I really hope something works, because honestly I'm going crazy, if it weren't for my friends, family, and this site I don't know what I would do.
    Thanks again
  • I am scheduled for my trial on the 20th, passed my psych evaul, :) . My PM dr is going the trial but my spine surgeon is going to do the implantation surgery. Is this a normal thing? I like my PM dr amd nothing against him but is wish my spine surgeon was doing both. I know I need to stop with the what ifs but if a fusion is even remotely on the table I think I would rather have it sooner than try and go back to work amd wind up having to stop yet again, or worse start the sping semester and have to withdraw half wau through. I hope this helps with the pain, but the company I have to go with doesn't have mri safe units, which I preferred and wanted to go with medtronic for that reason. Also, I'm jist frustrated and conflicted over the fact that all this will do is block the pain signals and not address the issue. IDK, just ranting cause I'm in a lot of painthe past week between my back,hips, legs and a 5day headache that won't go away.
  • Trial went in on Tuesday, so far so good, I can actually sit realitively comfortable for 60 mins something I haven't been able to do for almost 15months. Not 100% ready to sign up yet but if I can get a program that won't cut out when I stand, then I may. I am having little to no relief yet while standing but it cuts off due to being so positional. Trial was supposed to come out on Friday but has been rescheduled for Monday so that I am able to get back in to have some adjustments made.
    Thanks for all who gave advice.... I have a new forum with new questions so feel free to check it out and leave some pointers
  • Trial was a success, amd I have an appointment with my surgeron on Feb 6th to see when I can get on the schedule to have the device implanted. I asked about my main concern of what would happen if the bulging got worse, which I fear it has, and ,y PM assured me I would still be able to have surgery should the need arrise. I was also advised to try amd 'deal' with what back pain isn't covered by the implant as long as possible because should the need to have a second surgery arise it would be extensive fusion of at least 2 levels, which is what the VERY first dr told me back when I first injured my back, but he wouldn't do that because of my age. Makes me wonder if I should have fought for it harder rarher then going for the disectomy. Who knows.
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