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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.
  • 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.
  • BW, your words were eloquent and describe my own personal results to a T. I would have preferred not to have a 2 level fusion or an implanted SCS. My fusion was a success in that my spine is stabilized. Had I not procrastinated in my care, I may have been able to avoid some of my nerve damage. Nobody really knows for sure.

    Jake, I'm know you're apprehensive of how you should proceed. Maybe a second opinion is in order. Maybe ask your surgeon what type of risks do you have for permanent nerve damage. Have you had an EMG to assess the current nerve damage. Is it already considered permanent? Are you prepared for the commitment that comes with a stimulator? Are you ready to commit several hours every few weeks to recharge the battery? Are you prepared to limit certain movements because you have this implant?

    I personally think its a mistake to have an SCS implanted if there are other surgical options. I'd rather go for a longer term fix than putting a band aid on something until whatever/whenever.

  • 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>
  • To be fair to the doctors, it's hard to impress upon a patient all of the information available on this subject. Forum's like this help. I've only had my implant for 2 months and feel I've only scratched the surface of what it can and will do for me. I hope you find the answers you seek. Take the time to weigh you're options and don't hesitate to ask questions. I hope you find a way to get your back stabilized.

  • 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.
  • I agree, I would seek out a second opinion. Nerves are funny, they don't like things pressing on them. There is always the risk of some nerve damage whether you opt to do nothing, have an ESI, Fusion, or even a SCS implanted. Maybe this doctor sees you as having minimal risk of something bad happening. You're the one who has to live with the consequences of your decisions.

  • MAJORPAIN said:
    How did you get so smart? =D>
    An obsessive research habit. :loll:

    Well, that and personal experience, combined with an excellent neurosurgeon and pain management doctor who are both willing to indulge my information seeking behaviors.

    The main issue with exercise is that exercise to lose weight is very different from exercise to maintain health. On a maintenance plan, it's easier to engage in "lighter" exercise or other less structured activities and still burn the portion of calories that balance your intake with your output. When you're trying to lose weight, you have to burn enough calories to create more burned than you take in, which is most easily accomplished through structured cardio exercises.

    With the SCS in the picture, things get complicated from the very beginning where exercise is concerned. Certain stretches can pose a problem, which automatically puts you at a higher risk of an injury during exercise.

    When we're trying to lose weight, the ability to exercise at a higher intensity is extremely helpful, even just for short periods of time. But, with the SCS in the picture, the higher intensity workouts also significantly increase the risk of damaging ourselves or the system. Jerking lead extensions, tearing anchors loose, and pulling leads out of place are all things we have to keep in mind, especially during those 3am infomercials, when P90X and Total Gym claims of losing 50lbs in 3 months start to look like a really GREAT idea! :wink:" alt=":wink:" height="20" />

    I've been able to strike a balance between lower impact exercise, longer durations, and increased frequency, but it hasn't been the easiest balance to find. Right now, I exercise 6 days a week. I'm in the pool doing water aerobics 3 days a week, for 1.5-2 hours each session. On the days I'm not in the pool, I spend about 45 minutes each day walking on the treadmill or with my dogs, another 30-45 minutes each day using my recumbent bike, and 10-20 minutes 2 days per week doing strength training exercises.

    With that exercise regimen and a healthy, well-balanced diet, I lose 1-2 pounds a week. That's healthy weight loss and I'm satisfied with it under the circumstances, but I also know that if I were putting in the time I am now doing the exercise I was doing pre-SCS, I'd be losing 2-3 times as much each week.

    Another trade-off is that a lot of days, the exercise is so exhausting, I have little energy to spare beyond that. Many days, I exercise, feed my pets and myself, and that's all the energy I have for physical pursuits. The reason I continue so diligently is because I'm seriously focused on the end goal, which is to get my job back. I'll be the first to admit there are many days I could just settle myself on my bed and accept the relief my SCS brings me, without worrying about anything more. I've been classified as totally and permanently disabled, so it's not like anyone else is pushing me to go back to work.
  • Hi dave ,I would not mind charging the batt but limits of motion could be a bummer but if a fusion turns out to not be an option I think it would a easy choice to make in order to treat this low back pain. Could you be more descriptive in reguards to how it would limit movement,and normal every day things like tying youre shoes ,getting dressed,showering,driving a car,.I was in love with the scs when I did not need a pain pill in the morning felt like a huge weight was lifted off me,but was not sure of what the trade off would be.I am bummed today because I could be buzzing right now but I had to change the inplant date so I can get a third opion.I think this is the right choice but a hard one, my body is so worn down from pain and my DR wont give me pain meds.
  • I would assume that motion limits would be more specific to the individual based on where the leads are and the IPG is planted. My right lead is located at T11-T12 and the left lead is at T12-L1. From what I understand, this is a little lower than most folks. The next part to consider is where they put the IPG. Mine is on the left side about a 1/2 inch above the belt line and roughly 4 inches from the center of my spine.

    With all this in mind, I am supposed to restrict my movements so as not to put undo stress or sudden movements on the muscle groups where the implant and wires are located. That's a tall order to say the least. The doctor who did my implant has recommended that I give up golf. Time will tell if I decide to comply with this request. I can tell you that sometimes I'll turn a little or bend to put my socks on and I can feel the wires pulling under my skin. It's a bit of a creepy feeling to sat the least. I have also woken up to a dull achy pin point type of pain where the leads are within the spine, especially the right side (had this pain during the trial but it was much more severe, but it still takes your breath away).

    It seems most people are given 2 months of restrictions after their implant. My doctor has placed me on restrictions for 4 months. I'm only 2 months in, so I've not had the opportunity to really push it yet. As far as everyday life goes, I really haven't noticed anything different. You just have to play it by ear and move forward as best you can. I'm a pretty active person, so time will tell how much this is going to crimp my style.

    I am pretty pleased with the coverage and relief that the stimulator provides. There's always a trade-off. I hope that this new opinion can give you a new viable option that will allow you to get back to an active life style.

    Good Luck.

    MAJORPAIN said:

    Hi dave ,I would not mind charging the batt but limits of motion could be a bummer but if a fusion turns out to not be an option I think it would a easy choice to make in order to treat this low back pain. Could you be more descriptive in reguards to how it would limit movement,and normal every day things like tying youre shoes ,getting dressed,showering,driving a car,.I was in love with the scs when I did not need a pain pill in the morning felt like a huge weight was lifted off me,but was not sure of what the trade off would be.I am bummed today because I could be buzzing right now but I had to change the inplant date so I can get a third opion.I think this is the right choice but a hard one, my body is so worn down from pain and my DR wont give me pain meds.
  • Thanks Dave I wish you the best also,I used to be very active and now about all I can do is sit in a zero gravity chair all day,every once in a while I will go fishing on a boat ,its my passion and exersize but its hard to enjoy when the pain gets were I cant stand or sit any more,I could not do it anymore intill I was put on the morphine,their is somthing about being on the water that just helps my mind even if I cant walk when I get back in. It is so hard to do nothing when you are the kind of person that needs to be active.I think the scs will still help me alot in some ways even if a fusion is not an option but like you said its a trade off ,I think this important to know .hopefully It wont stop from fishing ,I guess I am lucky that my passion is not golf!I think I did see someone swing a club that had a scs I think it was a add.The DR was going to use a boston scientific unit what brand do you have ? Two DR told me this was the best unit,I think it can do lumbar and mid back too maybe at the same time, that would be cool.
  • What determines "the best unit" is the same as asking someone what their favorite car is. It's so subjective, that if anyone tries to bank on which one is really "the best" tell them not to waste their money. There are differences, but those differences aren't really enough to showcase one over the other regardless of what you may read or be told. Doc's have favorites of just about everything they use, from meds to hardware to specific instruments and lights. Some have different features, some have more features. Some have larger batteries and some have rechargeable batteries. The charging systems are all somewhat different in size and attachment, but if it works it works. The more important differences are whether it is a constant current or constant voltage system along with the type of lead or leads being used. You have to really rely on your doc to hopefully choose the one that best suits your pain syndrome. Of course there's always the insurance companies dictating which one they will approve as well as company rep support in the area you are living.

    Some patients get hung up on the size of the IPG or the style of the patient remote. In the grand scheme of things those should be the least of the considerations, whereas how effective it works should be the most.

    My leads were inserted just above T1 and are slightly staggered to give me coverage from C3 to C7. My wires run down my back to my IPG that is just below my beltline about 3 inches to the right of my spine. (about where a wallet would be in a back pocket). I tore my anchors loose doing yoga and normal LB stretches and exercises. Was a mess. I can tie my shoes if I sit and rest my foot on a step or coffee table without pulling my wires. Today I was washing the truck and I squatted down to clean the rims and could feel the wires pull and had to back off. I don't have enough slack to allow me to play golf anymore, but most people do not notice any lack of mobility except my structural limitations in my neck.

    Like BionicWoman, I use the treadmill and also hike the forest trails in our area. I use light weights and work out 2kg and 3kg balls. It is a challenge to pull back from the serious stretching, strengthening and weight training I did prior to my SCS. I can still scuba dive, but have to be careful with regard to getting my gear on and off and entering and exiting the water. It's a trade off I had to make, especially after tearing my anchors loose last year. That wasn't much fun and I don't wish to repeat it.

    Being out on the water is easy with the SCS as well as in and under the water. Fishing is easy, you just have to make modifications as to placing tackle boxes and bait up on a bench or cooler so you don't have to bend over as far. Now I wouldn't want to try and land a billfish with an SCS, but bass, trout, salmon, cod ... no problem.

  • Did you say yoga and scuba wow ,It must be hard to over come the lead issues and do what you are doing.Maybe they will invent leads that streach.Looks like I will just have to make modifications for the billfish.I alredy make modifications when bending and try to put every thing were I dont have to bend to get it.What brings up My question about the brands of scs is I think most of the brands say for use after other surgerys have failed or somthing like that but the boston scientific site says somthing like after failed back syndrome OR intractable pain. This made me wonder if this unit might be more advanced and thats why they could say that and maybe thats why both my PM DR use them and both were willing to implant before fusion maybe it could be that independent 16 channel thing ?I am starting to think I would need to prepare for the scs implant and work on the weight and do alot of the exersize that I would not be able to after implant, I have a strong feeling that the DRs should have book to give to us before we have a scs temp and perm thak not only tells us the benifit but also the DOWN SIDE so we get the whole picture. Because like most things it is a trade off,and we need to know this.Maybe my DR would be willing to use this info to make this happen.For me the trial gave me an idea of the pain relief but not a good understanding of the drawbacks, but it did let me know that I needed to know more.
  • Jake, now you're starting to see the bigger picture. As C stated, the biggest difference between the different simulators is constant voltage vs constant current. The main reason they are recommended for usage after all other surgeries is that having the implant is life altering. Another reason is that the problem with your back still exists. Basically you may be able to have better pain control which will enable you to do more which can and most likely will cause additional damage to your back. This opens you up to suffering permanent nerve damage and I wouldn't wish that on my worst enemy.

    Take me for example, my back is stabilized. Odds are, I'm not going to do any further damage to my back. Granted I still have pain but that's from the nerves be broken. Basically the stimulator is most useful when your probably not going to do any further damage to your back.

    I suspect that your PM Doc is proposing whatever he can to help you. He doesn't do the fusion surgery, so his bag of tricks is limited. Although your docs means well, I believe they just aren't thinking it completely through as far as your total care goes and your long term prognosis.

    Keep us posted on what the second opinion doc has to say.

  • Jake, if you want an eye-opener, get a friend/partner to help you run a piece of fabric medical tape from your shoulder blades, straight down your spine to your waist. Go about your daily activities and see how often you notice that piece of tape pulling. It's not an exact duplicate of the SCS lead wires, but every time you notice it, you'd most likely be putting some level of tension on your lead wires as well.

    That was my solution to my partner continuing to move things I put in strategic locations to places I couldn't reach, then answering with "I know you can't bend/stretch/reach, but......"

    The piece of tape I put on my partner only lasted 3 hours before I was asked to remove it. I have to admit, I took a twisted sort of enjoyment in ripping it off.. but at least my stuff doesn't get moved anymore! }:)

  • I gotta admit, that post put a smile on my face. I doubt my wife or kids would ever let me torture them so, but one can still fantasize.

  • Definitely worth a smile and a chuckle.

  • That is pure genius,maybe the DRs should have a pre trial with the tape to see if the juice is worth the squeeze.
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