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Spinal Cord Stimulator

edited 06/11/2012 - 8:48 AM in Spinal Cord Stimulation
New member with questions. I have 4 hernaited disks, 2 thoracic and 2 lumbar (L5/S1 and L4/L5). The thoracic I am told i will have to live with the pain. Every moning i get up and ice just to numb my spine.
I had a 12mm herniation and last year had a laminectomy to remove the pressure on the nerve root at L/5. I've had chrinic leg pain in the left leg and just finished a trial Spinal Cord Stimulator. It worked. Now after the trial i am waiting for approval for the permanent.

3 out of 4 doctors want to do a 2 tier fusion. The other says physical therapy. How can i do PT when i cant ven get out of bed in the morning?

Here's my issue and i hope someone can shed light on this. I now have pain in my right thigh - like a bad charlie horse. I am worried that if i get a permananent implant SPS that if i am developing problem in my other leg they cannot be diagnosed by an MRI.

I am on a regimen of Norco, Soma and Neurontin and really want to get off. Does anyone in this forum have experience with SPS?


  • I moved your thread here to the Spinal Cord Stimulation forum. If you browse through it, you will find that several of us have permanent stimulators and others have gone through trials.

    One thing that is a big concern with spinal cord stimulation, is present or future mechanical issues that continue to cause structural and complex pain issues. If your spine is unstable, getting an SCS without first stabilizing the spine, will most likely cause the stimulator to become ineffective fairly rapidly.

    I have an SCS and have had it for a couple of years now. I still have to take Neurontin, along with an NSAID and a muscle relaxer. An SCS rarely if ever allows a person to completely get away from the meds. It can help reduce the requirement at times, but that's about it.

    Why do the docs want to do a 2 level fusion? Why are you looking into an SCS before getting the pain generator fixed?

    Welcome once again,

  • Very interesting information and thank you C.
    They want to do a L4/L5 and L5/S1 fusion because both levels are herniated. I have had 7 injections since November (3 in T11/12, 2 at L4/L5 and 2 at L5/S1) The L5/S1 laminectomy re-herniated and the 4/5 has a small herniation (6mm) with a tear so they feel the fusion will stabilize.

    I am about to turn 40, I have a 3 year old and about to be a daddy again in April so it is me avoiding a fusion as long as possible.

    The best pain management doctor I have been to so far is recommending the SCS. The trial went well for my left leg but they didnt get the leads postioned right for my low back pain. He said he can give me a 90% chance of back pain relief doing the permanent implant. I am not sure what to do at this point.

    I think I will get a new MRI before I do anything. Thanks again for taking the time to read my post and respond. Any information from people who have ben through this is always helpful.

    Best regards,
  • about a pns9periferial nerve stimulation, they lay the leads directly over the problem area in my case is L4/5. The neuro said I do still have a bulging disc and ai just said NO idont want to be fused, I felt the trial stimulator gave me what I have been avter for several years. An drom what aIve reaad most get fused cant bend or mobve of course, then they ahave to have a scs anyway so unless you unstable, why fuse when you can buzz. very hard decision to make, but talk it over with your PM an do some reading on here, lots of wonderful people with excellant advice and with alot of experiance in the matter. good luck to you, I get my perm on Nov 16 th at @7:30 am Im ready for the buzz I miss it.
  • Just so you know, the not being able to bend after a fusion is a fallacy. I've had a 2 level fusion in my lower lumbar and have no problems bending. Can I touch my roes, no, but then again I couldn't touch them before my fusion. I have a stimulator but its for another problem. A lot of people have a fusion an go on to live fairly normal lives.

  • Pain management docs are primarily concerned with immediate pain management. Surgeons can tend to take business away from PM docs, by repairing the damaged structural areas of the spine. Medical implants come with more restrictions than a fusion does and are a huge responsibility. Just keep in mind when looking through literature and listening to PM docs about spinal cord stimulation, in order to sell a patient on the idea, they have to make it seem like "no big deal". It is a big deal and if I could get something repaired so that I don't need my SCS, I would in the blink of an eye. Also, many places try to market the SCS as a removable system and therefore no big deal if you need to put off surgery for a while. Most docs want nothing to do with a patient once they have an SCS. Most are afraid to touch or help an SCS patient.

    I'm not trying to say "shut the door" on an SCS, but trying to say "do your homework and then do some more" before ever agreeing to going for a trial or permanent implant.

  • haglandc said:
    It is a big deal and if I could get something repaired so that I don't need my SCS, I would in the blink of an eye.
    I agree with you 100% there. I've had my SCS for just over 6 months, and if they told me I could have surgery that would give me the ability to get rid of my stimulator, or just keep my stimulator forever, I'd be scheduled for surgery faster than you can spit. And that despite the fact that I get 100% relief with my stimulator - something that is virtually unheard of.

    Going through the trial, the surgery, 4 days in the hospital, then meeting with reps to tweak things repeatedly, followed by an incessant routine of 'Honey, do you remember where I put my remote?' (I had a brain tumor removed five years ago, my memory is not great)... not to mention having to sit on my charger for hours at a time to charge the battery, worrying about going on trips and through airports, doing things without breaking the 'rules'... I don't even want to think about what it'll be like trying to live overseas for a couple of years. There are a lot of things that I would do if it meant not having to do all of that all the time.
  • dave said:
    Just so you know, the not being able to bend after a fusion is a fallacy. I've had a 2 level fusion in my lower lumbar and have no problems bending. Can I touch my roes, no, but then again I couldn't touch them before my fusion. I have a stimulator but its for another problem. A lot of people have a fusion an go on to live fairly normal lives.

    Dave is absolutely right. The lower lumbar vertebra don't have a wide range of motion to begin with, so there's no discernible loss of movement when they're fused. Bending at the waist is my worst "bad back" habit, and the thing my doctors and PT's have fussed at me for the most over the years. My fusion didn't change that at all.

    It's kind of ironic, in the context of this discussion, because my SCS has reduce my ability to bend more than my fused vertebra could have ever hope to.
  • I appreciate all your comments. One thing I find interesting is that so many people who have had fusions end up with SCS's. So even if I getn a fusion I was wondering the likelihood I would also end up with an SCS. Honestly I am terrified of having another back surgery. The laminectomy/discectomy didn't give me relief. I never fully recovered because I had an infant at the time. Now I an going to have another child so I am averse in having a fusion. I am thinking the SCS as a bridge to get me to a fusion if I can hold off. Before I do anything I am going to meet with my back surgeon. Thanks again. It would be interesting to see statistics on this relationship between fusions and SCS.

    Best regards,
  • I didnt want to be fused,b/c it seems about 1/2 if not moore end up with failed back syndrome, more fusions, as one disc interfeers with the next one up My NS told me I still have a new buldge, I said I dont want to be fused, cause,I will just keep reinjering myself, so I,d might as well hide the pain, but thats my personal openion, If the spine is still in fairly good shape and stable,why fuse, spend all that money, on a fusion, then need astimulator on top of that? and I guess if it gets that bad after the scs get fused, thats alittle cheeper? I will have a pm and a neuro, and Im sure in the future,the NS isnt going to pass up money to fuse...Rose
  • That's like having a tire with a slow leak in it. A person tries to save time and money by constantly putting air in it, only to have it blow out on them at the most inopportune moment.

    FBSS is a catch all. It could be that the fusion fails, the person develops Arachnoiditis, the patient fails to use good body mechanics or has other unhealthy lifestyle choices, or it could simply be that the root of the problem wasn't address by the fusion in the first place. Statistics are very misleading.

    Of course it all boils down to personal choice. You are the only one who has to live with your pain and your spine. Do what feels right for you and don't second guess yourself.

  • Fusions are intended to do one thing and one thing only - stabilize the spine. A fusion is not a pain management tool. In some cases, physically stabilizing the spine with a fusion is enough to reduce or relieve pain. If the pain remains, then you have to move on to procedures that are pain management tools.

    Declaring a fusion was a failure because it didn't resolve your pain would be the equivalent of declaring the SCS a failure because it didn't decompress nerve roots. It's not the respective purpose of each procedure, so you can't use it as criteria to evaluate the outcome.

    There is one other very important factor that's getting glossed over with the idea of getting the SCS as a band-aid and planning to fix real problems later.

    Once that SCS is implanted EVERYTHING changes.

    Do you know what really happens with doctors if you require major spinal surgery after the SCS has been placed? I do, because I'm living through it.

    The first thing you notice is that the surgeon becomes very wary. They spend more time than usual staring at the various radiology films, with their hand on their chin or their pen tapping on the table. They start to say something, then they pause, then the pause becomes a full stop. Complete sentences become the exception, rather than the rule.

    Instead of appointments ending with a plan of action, they end with the plan to consult the doctor that's managing the SCS. The surgeon's focus changes from correcting the original problem to finding out how the various surgical options will impact the SCS AND how the SCS will impact those surgical options. Instead of planning for the best outcome, the surgeon begins planning for the outcome with the fewest complications. It's a subtle, but very important difference.

    When you return to your pain management doctor, you notice that they, too, have become wary because they're being put on the spot for answers about the SCS that are largely unknowable. The SCS rep becomes involved, to try to provide some of the answers, from very basic to very complex issues. Certain electrocautery tools are contraindicated with the SCS, so which can and which can't be used during this surgery? How will that effect blood loss during surgery? What are the chances of extensive hammering against the spine causing paddle migration? Lead fractures? Dural tears? The list goes on, and on, and on, with no clear cut answers.

    The pause becomes an integral part of your medical team and begins attending all of your appointments. When nobody knows the answers to these surgical unknowns, the pause jumps in and seems to explain the issues. Instead of the normal confidence of the surgeon and pain management doctor, their demeanor changes and sentences constantly start with words that inspire anything but confidence. Nobody wants to see their doctors visibly uncomfortable with a situation, and hear every other sentence begin with "would it work to..." or "maybe we could..." or the real biggie - "what if we try ______ .. and if that's not looking good, we'll back up and try... ______.. and if that doesn't work.. well... ~~trailing into silence~~"

    You might think that going forward with the SCS and telling your doctors ahead of time that you want to get fused later will change this scenario, but it won't. The presence of the SCS trumps all the plans you think you've made.

    As soon as that SCS goes in, you become a high risk surgical candidate and short of emergency surgery for life-threatening issues, nobody really wants to take the risk. None of the doctors involved really want to take responsibility for the laundry list of things that can go wrong, just because the SCS is there. Even if there's a clear need for surgical intervention, you will find yourself facing an uphill battle to get it done. Weeks turn to months of increasing pain and decreasing function, while you wait for the doctor(s) and SCS rep(s) to sort things out.

    This is just one of the many parts of life that changes the moment that SCS is placed. As a person that has been through the entire process and experienced life after the SCS implant, I completely understand the inability of patients to fully comprehend all the changes to come. Others who have been through the process can chime in, but I believe that the full impact of post SCS life doesn't set in completely until about 1.5-2 years after the implant.

    From where I am right now, I can't even imagine going into the SCS with known mechanical issues, especially of the caliber described in this thread. I have absolutely no idea why physicians would be willing to entertain that option and can't help but question the ethics of those doctors. Going forward under those circumstances all but guarantees the failure of the SCS and creates an uphill battle to get anything fixed. It's not cheaper, it's not easier, and it's certainly not going to save any pain or heartache in the end.

    Maybe when I'm further down this road I'm traveling and can look back at my upcoming surgery, having experienced all that comes with it, I will have a better understanding of this idea. But for today, reading these threads is a lot like watching a car sitting on the railroad tracks, knowing that they don't see the train that is barreling down the tracks toward them.
  • Thank you for your post. I am considering SCS and your post has given me more things to grind before I go ahead with the implant. In fact, some of it actually scares me and my first reaction is to refuse the SCS until I read some of your other posts which told how far you have come due to the SCS.

    Thanks again for your posts!
  • Bionic Woman - your post brought me back to the Dr. circuit as i aptly call it. Sorry i havent been back on the board to thank you in a timely manner. Funny how 4 different docors can come up with 4 different opinions on what i should do with my body.

    I am going with door number 3 please and am going to have a discogram. From there we will see what options i am presented. Sounds like a fun procedure but i am told it will give me more information.

    In the mean time my PM put me on Exalgo. Has anyone had experience with this drug? It makes me very itchy.
  • Glad my post was of some help, Icarus. I really didn't make it with the intention of scaring anyone away from the SCS, because at the right time, under the right circumstances, I believe it's one of the most incredible tools at our disposal. But like all tools, if you use them at the wrong time or on the wrong job, you're just in for a lot of frustration and failure. Kind of like using a socket wrench on a screw. It just don't work.

    But anyway, I came through here because I wanted to give a quick update on where those dismal conversations with my doctors have ended up.

    Because of the location of my problems, the location of my SCS, and the increased risk of infection associated with both, it will take multiple major surgeries to correct my current problems. If everything goes smoothly, it will take 3 major surgeries over the next 3 months.

    If the SCS weren't involved, it could all be taken care of with a single surgery, but because of the infection risks associated with the SCS and spinal hardware, it has to be spread out to deal with one issue per surgery.

    As I said before, maybe my perspective will change as I go through this process. But, at this moment, I still can't imagine setting yourself up to travel this road on purpose. It's not a choice I would make, personally. There are far too many sneaky little potholes. ;-)

  • I too had a fusion and several ESIs and a laminectomy and just got a SCS last week. So far, the SCS has offered the most pain relief. I am really reluctant to take narcotics out of some fear that I'll follow my injury with a long stay in rehab.I can now tell that I'll probably have to take some pain relievers anyway but probably not nearly as much as I had been taking. I think in my case the fusion was pretty much necessary as my lumbar spine was crushed after an accident. Like many people I was one of the fortunate ones who didn't have paralysis. After the fusion, laminectomy and ESIs (the ESIs didn't work for me at all) I seriously thought I was going to end up in a wheelchair the pain was so bad and I could barely walk (even with a cane). Right now, I am glad I had the SCS but I have not had it very long. Ultimately I think everyone knows their own body best and doctors do the best they can but they have so many patients and not much time to really get to know us (at least in my experience). Good luck!
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