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What is the down side to the perm SCS vs trial ?

edited 06/11/2012 - 8:40 AM in Spinal Cord Stimulation
HI,my name is Jake and like alot of you I have alot going on with my back ,DDD,Arthritis,blown disks pressing on cord on lumbar and mid back,neck problems Ect.I am 36 and hurt my back ten years ago and had cronic pain ever since.Tried most stuff, cryo,PT,ESI,TENS,inversion,ETC,been on pain meds for years,morphine for about two years I was on 120mg day .MY ortho said I am not a good canadate for surgery because of were the problem is and my weight. but if I lost 50 lbs he would do a two level lumbar fuison. I weight 290.My pm doct wanted to do the scs I agreed. I had the scs trial and I got it to help my low back pain but the leads seemed to cause some problems ,restrictions .When the leads came out my middle back felt better and felt walking was easyer. I would like to know What is the down side to the perm SCS and the restrictions,bending twisting. is it alot like the trial or does alot of it get better with the perm SCS?


  • Just my opinion here. If you have pain issues that cannot be controlled by medication, surgery and basically any conservative treatment, then there really isn't a down side to SCS therapy if the trial proves it to be of benefit in managing your pain.

    Think about it. During the trial you have leads that are not anchored but merely inserted and tacked to the skin. An external unit is attached which can be caught, has to be managed and the risk of infection is extremely high.

    A permanent SCS has the leads anchored into the epidural space and the entire unit implanted for a completely closed system. Once things are healed then the restrictions are pretty well individualized.

    If restrictions and discomfort trump the benefit that you felt you received from the trial, then I personally doubt a permanent SCS is right for you.

  • At the end of my trial I was getting good pain reduction in my low back and was feeling like I needed pain meds less and less.But on the down side not bending or twisting was hard ,does this get better with time with the perm SCS ? I think I will be happy with it once I get the perm scs and it heals up . I was off the morphine and I almost felt like I was buzzed ,I think this was my body feeling more like "normal" ten years in cronic pain I cant even remember what normal feels like. I am tring to decide scs or two level fusion ,because some say that you need to fix the problem first but I think most on this forum have had a fusion and at least one said he wished he could have done scs before fusion.
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  • Getting an SCS to control pain when a fusion has been recommended is much like spraying that "fix a flat" in your tire when it's bald and needs to be replaced.

    It's been said many times, that if you get an SCS when there is still a mechanical problem that can be repaired, the pain relief that it provides will only last for so long. In no time it very likely that you will be trying to chase the pain via reprogramming and increased meds.

    You cannot have an MRI once you have an SCS implanted. So if your problem escalates, the doc will either have to go on a very out dated MRI, or remove the SCS in order to do a new MRI. Once an SCS system is removed, a patient is required to wait between 3 and 6 months before a new one can be implanted. So although they are removable, it not like removing bridge from your mouth and putting it back in.

    I know that Dave and BionicWoman also warned you about the fact that many surgeons will be very hesitant to treat you or even try to evaluate you once you have an SCS implanted.

    As far as permanent restrictions go with the SCS, it all depends on whose doc and whose rep you talk to. During the 6 to 8 weeks after the implant surgery you will be instructed to do no BLT so that the leads can scar in well. In the grand scheme of things, that's not a very long time to wait.

    Having an SCS will mean that you never know what it's like to feel "normal" again. Day and night you have that thing buzzing away and you cannot get away from it. If you shut it off and the source of your pain is still there, then you will be hurting like crazy and still not feel Normal.

    If there was something proven that would help with my pain as much as the SCS does, I'd take it over the SCS in a split second. I think you're correct, that many docs are suggesting the use of an SCS as a stop gap measure to put off surgery. I believe that is why there is an increasing amount of failures for those who go ahead and get an SCS when their mechanical issue has not been dealt with first.

  • You have some very good points,thanks,my first ortho stoped doing fusions because he said it is unclear if they help,I think you have to look down the road and also take how many got better vs worse and stayed the same.I was wishing for an ADR but My second ortho said they were not going so well in the lumbar and would not work for me anyway because I need 2l.He told me that you cant go by the numbers after a trail they are not real world numbers because the pick the perfect people for the trial, He did not want to do the fusion because of my weight/build and it is higher in my lumbar, my PM wanted to do the scs ,so I went back to the ortho and he showed what he could try but could not tell me what the numbers would be he said it would be a hard surgery for him ,I dont think the plates he was going to use were approved for 2l I think this is why he would use one made by medtronic and the other depuy. So I dont get the feeling the chances are great at this time ,I asked about scs and he said it might help and he also said it could be removed and not cause a problem for the fusion later on, he use to inplant them years ago. I ask about the question about this not fixing the problem and it getting worse.If I just needed a 1l fusion say l4,l5 I think it would been a done deal but its not that simple.
  • Oh, and one other thing, as if I haven't said enough. :lol:" alt=":lol:" height="20" />

    When I see people making statements like "he used to implant them years ago" then I automatically want to scream: get a new doctor.

    If your doctor "used to implant them years ago" and is making current decisions based on that, you are not getting the best view of the possibilities.

    Neuromodulation is a rapidly evolving field and if your doctor hasn't been actively involved in implanting devices over the last 2-3 years and staying abreast of the most current research, then he's making decisions based on dangerously outdated information and assumptions.
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  • For me, there is no downside to the permanent SCS. Like C, the SCS was my absolute last option, short of a intrathecal pump.

    The biggest "down side" I see in your situation, as you've described it, is that recommendation for a 2-level fusion if you could lose 50lbs. I'd be seeking out the second opinion of a neurosurgeon specializing in spine surgeries, as well as the bariatric physician. In addition to the reasons I mentioned in the other thread, if your BMI is high because of muscle, rather than being truly obese, a bariatric physician can be an ally in your care and address that issue with the surgeons from a professional standpoint.

    Fusions may not eliminate every patient's pain, but pain is a symptom, not the target problem. The target problem that a fusion addresses is to correct structural instability in the spine and there is no doubt that they address that problem. A successful fusion creates stability.

    Our bodies are not intended to function correctly when spinal instability exists. When the lumbar spine is unstable, the musculature of the entire body has to work overtime, 24/7, to compensate; one muscle near the lumbar area begins to function differently to compensate directly for the instability, which causes the next muscle to function differently, to compensate for the change in the first muscle, and so on. It increases the "wear and tear" factor on our bodies exponentially and if you have 2 levels of instability, it's doubled.

    That doesn't even begin to address the impact on our joints, because we also walk, lay, sit, and engage in almost every physical movement differently, in our efforts to compensate. It also doesn't address the impact on the nerves, which become repeatedly trapped and released by bones that were never intended to move in those ways, or the constant and continual inflammatory processes, as a result of our bodies' natural physiological response to an area that is not functioning properly.

    When you look at whether a fusion is effective in that context, rather than just looking at whether it relieves a patient's pain, it changes things dramatically. Pain is the most obvious symptom that we measure as patients and the symptom we complain most about to our physicians. That's not because it's the most important symptom, it's because it's the most conscious symptom. Pain is not the only issue and relief of that pain is not the only measure of success with a fusion.

    Of course, like any other treatment, fusions come with risks, side-effects, and aren't a perfect "fix," so even afterward there may be continued issues of pain and excess wear and tear on the body. But after extensive research on the SCS (before and after my own implant), I firmly believe that the structural problems need to be addressed first; the current body of research supports that, for long-term success and patient satisfaction with the implant.

    On the topic of weight loss, I'm not a "skinny" person and I've posted in other places about my weight loss struggles. At this point, I'm approaching 100lbs lost in the bit over a year and half since my permanent implant. I can tell you, without a doubt, that it is not easier to lose weight with the SCS. Don't fall into the mindset of believing that getting the SCS will make exercise easier and then you'll be able to lose that 50lbs and have the fusion surgery. That's just mind games and "magic bullet" thinking.

    Unless you make a solid mental commitment to losing the weight no matter what, it's not going to happen. If you can exercise with the SCS, you can exercise with the pain. It's a mental trap to think that the SCS will somehow give you the power or the relief you "need" to lose the weight.It doesn't, and it won't. The reality is that the SCS limits certain types of exercise, because there's lot more to lose. If I knew then what I know now, I would have worked much harder, through the pain, to drop more weight before my SCS than I did.

    Also, don't fall into the mental trap of listening too much to people who say they wish they'd skipped the fusion and just gone with the SCS. I wish I'd have skipped the fusion and gone with the SCS too. My fusion was one of the most horrible experiences of my entire life. However, the reality behind that wish is that if I had skipped the fusion, I wouldn't have the success I have with my SCS. It's not the individual treatment; it's the sum of the parts. The relief i have didn't come from the SCS or the fusion - it comes from the SCS and the fusion. Without both, plus medication, physical therapy, exercise, weight loss, and a few dozen other things, my pain would not be as well managed.

  • BionicWoman said:
    Oh, and one other thing, as if I haven't said enough. :lol:" alt=":lol:" height="20" />

    When I see people making statements like "he used to implant them years ago" then I automatically want to scream: get a new doctor.

    If your doctor "used to implant them years ago" and is making current decisions based on that, you are not getting the best view of the possibilities.

    Neuromodulation is a rapidly evolving field and if your doctor hasn't been actively involved in implanting devices over the last 2-3 years and staying abreast of the most current research, then he's making decisions based on dangerously outdated information and assumptions.

    Amen to that!!!

    I had to see a neurosurgeon that wasn't someone I would let operate on me. But the "system" required that I see a neurosurgeon where I was at before flying back to the US for treatment.

    This NS "used to implant them years ago" and he was totally ignorant on what they can and do how they do work these days. He had xrays taken to be sent to my PM doc in the US. These xrays clearly showed that my anchors had torn loose and my strain relief loops were gone. Mr Used To couldn't "see" that, even though myself, my rep and PM doc could. He just shrugged his shoulders and said "good luck".

    It's always a good idea to get a second opinion when such a permanent procedure is being discussed. So you really have nothing to lose by letting someone else take a look.

    I had surgery at C1 and C2, when my PM doc had suggested an SCS to control the pain and avoid the surgery. Had I not had the surgery at C1 and C2, my pain may have been somewhat controlled, but I would have had a major stroke had they not found the vascular problem lurking undetected at the base of my brain.

    So now I have the issues that could be repaired, taken care of and an SCS placed in a better location to address the pain and other associated issues. My SCS would not be the success it is had I gone ahead the first time that my PM doc recommended it.

    BionicWoman has presented a great argument for you to arm yourself with. Take a good hard look at what everyone has presented to you and don't let the desire to take what seems to be the easier softer way push aside sound judgment.

  • Thank all of you very much for spending the time to help me better understand all of this =D> .The hospital called and moved me up for tomarrow :O and I thought I was redy but after reading this I would like to see another DR,I had planed on going to see another ortho before the inplant but then I got this call .I cant get over the welth of info in this fourm,It is like you only get half of the info you need with the doctor and the other half from people that have gone through it. =D>
  • How did you get so smart? =D> .That was what I needed to know. >:D< ,I was worried it might make exersize harder :?
  • Thanks Dave, I did ask the ortho the nerve damage question ,and he did not think it would be a problem.I am starting to think he might not be the DR for me.
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