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SCS Implant - Temporary or Permanent??

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:28 AM in Back Surgery and Neck Surgery
My surgeon also has me considering this to get rid of the nerve pain in my ankles and feet. Has anyone become recovered enough to have the implant removed? What brands are there and do you prefer one type over another? Are there any negatives to doing this? Thanks....


  • Is a pain management device. Normally it is used when there are no other options. If and that's a huge "if", a person was able to buy enough time until new procedures or medicines could be found to correct their problem, then I could see them having the implant removed. As of right now, it is my understanding that anyone of us that receives an implant, is receiving something they will have the rest of their life or until something new comes along.

    Brand is like anything else, it depends on availability, options, price and someone near you that is a "dealer" for the lack of a better term.

    There are always negatives to doing something on this scale, but in most cases the positives outweigh the negatives.

    No MRI's
    Lead Migrations
    Lead Failure
    Battery Replacement
    Battery Failure
    Inability to wear certain clothing based on generator size and location
    Muscle Spasms
    Security Systems
    Dural Tear

    There's more, but that should give you a good enough idea. It's not a walk in the park, but for many of us it allows us to once again walk in the park.

  • SCS or spinal cord stimulator were developed using the Gate Theory of Pain. The electrical impulses block the pain signals from getting to the brain. Turn the SCS off or remove it? Pain signals get through to the brain just like they did before.

    I have permanent nerve damage and won't be spontaneously healing. The SCS helps me manage the pain, but isn't doing anything to heal me, or cure my situation. But it has been a God-send in my life and you'd have to kill me to take it out of me!! lol I just got mine January 5th and am very very happy.

    There are 3 main brands, and most doctors have their preferred brand. I'm sure your doctor does, as well. My first neurosurgeon preferred MedTronics but we moved. My new neurosurgeon uses ANS/St. Jude, and I was very lucky to get the brand new Eon Mini, which has the smallest pulse generator on the market (the part that is implanted in the hip or abdomen). It is slightly larger than a silver dollar.

    Mine is also rechargeable and that is portable as well. The main charger stays charged in the outlet all week. Then, we I need to charge, I hook it up to the belt, put it on with the wand over my implanted pulse generator (upper right hip) and off I can go, doing whatever I want. I am not tied to sitting near an electrical outlet or anything. I charge usually 3 times a week for 1.5 hours each. I could probably do twice a week for 3 hours, but I don't want to push it - don't want to run out of power. lol


  • i'm not a fan of scs.don;t like the idea of this thing telling my brain that theres nothing wrong when i know there is.and what happens if your back or neck is getting worse you;ll never it because this thing is lying to you.don;t like that you can;t get an mri with this in you.
  • The SCS does not block all sensations. Please do some more research as I would hate for you to make decisions based on inaccurate beliefs. If I were to step on a nail, my body would definitely feel that. When I bump my knee into the wall (I'm a clutz), my brain feels that.

    My doctor told me I can get an MRI if I ever needed one, but only from one colleague of his in a different city, not exactly close by. He would definitely not let me have an MRI just anywhere. This is apparently controversial, as most people have been told MRI's are big no-no's. If I ever get more info on what is so different or special about what this colleague would do for me with that special MRI, I will definitely post the info.

    I was to the point of searing, burning 24/7 stuck in a recliner fully reclined pain. As are most patients who try the SCS, it is one of the last ditch efforts. If you are able to function, work, live your life, pain meds help you.....then by all means, do not consider the SCS.

    Not all my pain is blocked from my damaged nerves, not by any means. Depending on the day, I get anywhere from 50 to 80% pain relief. But that is HUGE for me and allows me to have a life. I have power over my pain, it is not controlling and limiting me.

    And the SCS does not work for everyone, that is why there is a trial. Some people do not care for the buzzing/tingling feeling of the unit. Others don't get enough relief. Some can't imagine having something like that implanted in them and don't care to try it. Success is very dependent on the placement of the leads - one little smidgen and it could be in the wrong place. And if this ever stops working for me and replacing or repositioning the leads does not work, I was told my very last option (until something else is invented) would be the implanted pain pump.

    Damaged nerves are sending overwhelming "false" signals to the brain, causing the patient to feel very real pain, crippling, horrid pain. The SCS is a very simple but effective procedure to give many patients finally some peace and a break from the mind-numbing pain. Being able to pick up that remote control and change programs, turn it up, turn it down, etc., is unbelievable. POWER over the pain....an answered prayer for me.

  • You sound like a perfect candidate for the SCS implant. I wear a TENS all the time and it helps a lot. that's a good sign the implant could help me, my neurosurgeon said. do you use a TENS? I wish my TENS had 10 leads on it, though! that would help a lot more. :)
  • C, Cheri, and Motelman,

    Thanks for writing and giving me all the detailed info.

    I have nerve pain in my left and right foot. It is pretty severe and stopping me from driving, going back to work, and most normal everyday activities. I am in the hospital bed a couple of times a week because it wakes me up in the middle of the night. I can get rid of it as long as I don't get in and out of a car more than once a day and I walk a couple of miles everyday. If we have to go anywhere longer than a 30 minute drive I usually have to lay down in the van. I take dilaudid when it gets really bad but I am terribly allergic to NSAIDS and I am pretty limited in my options. I have 13 year old twins and would really like to drive and get back to work. Cheri and C - You both seem to have dramatic changes - I am pretty sure I am going to do it but wanted to hear about the positives. :)
  • G., I did try the TENS but it HURT so bad!! Since I had nerve issues and not muscle issues, the TENS unit stimulating the muscles in turn hurt my nerves. It was awful.

    The SCS feels entirely different to me, although some people like to say that the SCS is an internal TENS unit. I would not use that description at all, but like I said, the TENS unit really really hurt.

  • You sound a lot like me - nerve pain kept me from driving for many months, and I had to stay reclined. Also, if we went anywhere longer than 30 minutes, I was laying in the back or I would suffer mightily later.

    For me, the positives are that I got my life back, I have 7 programs to use, of which I love 2 or 3 use exclusively, I can call my programmer at any time and she will meet me and find new programs or tweak the ones that I have to feel the best. I have one for sleep, which gives me stimulation but at a very low level. My pain is 24/7, so I don't get a break.

    Since getting my SCS Jan. 5th, I have gone on a 9 hour one way trip, stayed in different beds, went to huge malls, did pretty much anything I wanted. If my pain started to kick up, I turned my stim up stronger.

    And I have an additional benefit that not all SCS users get. If I turn my stim up just right, during intimacy with my husband all my long lost sensations return and it is super duper wonderful. My ability to feel those was honestly mostly gone prior to the SCS.

    My boys, who are 16 and 19, have their mom back. If you asked them, they would tell you that this device is pretty cool. And my husband of 22 years? He's just flabbergasted and had prayed so hard that this would be an answer for me. And it is. We are very thankful.

    I am still careful not to bend, lift or twist and I have grippers all over the house, but I am back to doing almost 100% of the laundry, I do the cleaning (except the floors and showers that require bending and heavy water buckets). There's really not much I cannot do anymore, and for the last 3+ years, I had been completely disabled and not doing squat. If I got out of being reclined fully, I could expect to be dying of nerve flares in 20 to 30 minutes.

    Now, my nerve pain is there, but it is like it is far far away. It is not full on taking over my every thought kind of pain. And the buzzing/tingling? I find it very comforting.

    And I already talked about the portable charging with my brand/unit.

    Edit to add: Since getting this, I have taken very few breakthrough meds and many less muscle relaxers than I was taking. Where I used to take 2 percocet 10/325's a day, I've probably had 6 since I got the permanent SCS. And instead of Soma up to 3 times a day, now I'm at 3 times a week. So I've already had an immediate decrease in meds. I am waiting a few months before I try to decrease my long-acting meds.

    Hope that added more positives?

    Take care,

  • For me the SCS has been a wonderful gift. It's more than just the "getting your life back" syndrome. It has brought my personality back that had been pushed down so deep inside, that I didn't think I'd ever be able to regain it.

    I had detoxed from all narcotic meds about 10 months prior to my SCS. Over those 10 months I had increasing pain levels since surgery complications created almost more of a problem then it fixed. Being unable to use narcotics for pain control, my PM doc tried everything she had available to ease my rising pain. She finally contacted the doc who did the SCS and asked for help.

    I was frightened I wouldn't be able to live with the pain I was experiencing every day at such an accelerated pace. My future looked horrifying. Now it is a completely different picture! Now I have a future that I look forward to each day. For pain control I take neurontin and celebrex along with zanaflex for muscle spasticity. A couple occasional tylenol and that's it. I get excellent help from my SCS which runs non-stop. I cannot shut it off or I would want to rip my arm off and run it down the garbage disposal.

    I can once again drive, shop, clean house, sit at the computer, walk, work out and even scuba dive. I thought my days of underwater video production were gone, only to land a job the same week I was lifted from my post op restrictions. That was one of the best gifts I've ever received. My husband and I have conversations that are about "things" and not about pain and inability to do things. We go out on dates again and have fun together.

    So the positives for me are priceless. There's more, but you get the picture.

    Good luck,

  • if the scs is great why don;t they offer it before they do all the surgerys and pt?
  • GOOD Question!!! I would LOVE to know the answer to that. I have actually run across people online who HAVE gotten the SCS instead of surgeries, but very few. I truly think it is based on the doctor's belief system. Shoot, after my 3 surgeries and I still had horrific nerve pain, they still told me to be patient and "allow time for my nerves to heal". Not one of those surgeries helped that pain. UGH.

    The SCS does not work for everyone and also does not work that great (or at all) for pure back pain, but the trial is so relatively simple (Mine wasn't, but I've been told that is very rare). I honestly and truly do not understand why this technology is withheld until the last possible minute (it seems to me). I do not know how a doctor, who knows full well the potential benefits of the SCS, sits and looks at a patient with permanent nerve damage (me) and claims there is nothing to help except injections, injections, ablations, etc. Even when I came with a referral from another neurosurgeon to do the SCS.

    One theory I have heard is that there is poor reimbursement by insurance companies and the docs make tons more money doing almost anything else. My programmer told me that ANS/St. Jude is working to get reimbursement rates up, but she had just a few minutes to discuss it with me. I had asked HER why this isn't used more often. (As I was crying waiting for the trial leads to be removed - I didn't want to go without that pain relief that I had just experienced for 5 days for one more minute.)

    Additionally, if my SCS continues to work like this and I eventually decrease or get completely off of meds, guess who doesn't see me anymore or get any money? Sad but true. I think that theory applies to many things in the medical industry.

    I would LOVE to find out the answer to that question. For people that pass the psych exam and have horrid pain, I would love to know WHY.

    "C", what say you? Any ideas?

    Good question.

  • Why is the Methodology (is that a word?) :) flawed?
    I have not been through a bunch of spine surgeries. Never been on anything stronger than Percocet. Not unless I was admitted anyway. I have also mostly just toughed out the pain and complained to anyone who will listen!

    I have had CT, scans, MRIs, a partial shoulder replacement.
    No one sees anything obviously wrong, Yet I am in pain! I've been poked prodded, injected , massaged TENS united. You name it. It all circled back to me still hurting and PM wanting to inject things that had already been injected!

    That's when I raised the white flag and screamed for a second opinion. The second opinion PM looked at everything my PCP sent him and told me it was likely I damaged (or the orthopedic surgeon did it) nerves. The injuries are not likely to be correctable even if they can be discovered. It's been too long, So he recommended an SCS trial.

    I guess depending on the doctors involved it is possible to get to the SCS without spinal surgery first.

    Quick? =))

    That ain't going to happen ! 8}
  • Personally I feel that it has more to do with it being a last resort pain management device instead of a standard pain management device. Believe me, if I could be "fixed" by a different surgery, I would much prefer that route. If there were a surgery or some other conventional means of controlling my pain, I would jump all over that and give up the SCS. Since at the moment there is not, I am thrilled to have the SCS as a pain management option.

    I can certainly appreciate what the SCS does for me and am more willing to overlook what it doesn't do for me, since I know we have tried everything possible prior to go the SCS route. I really don't feel that a person can appreciate the help of the SCS unless they have been through the ringer and come to that point where there is no other option at the moment. I think that doctors are aware of that too.

    A couple years ago I was offered an SCS trial to control my headaches. I laughed at the idea and told the doc thanks but no thanks. I went ahead with a seldom done very risky surgery and wound up with complications nearly as bad as the original problem. Had I gotten the SCS at the time I would still have developed other problems now being addressed by the SCS I have now, however I don't think I would be as enthusiastic as I am or appreciative as I am today.

    The SCS limits me, whereas a surgery or two to repair something would provide me more freedom. So I think there would be a resentment towards making the decision to go with an SCS, had there still been surgical options. If I had any resentment towards my SCS, I don't think it would provide as much comfort and aid as it does.

    Getting an SCS is not a "one time good deal". It means that you are conceding to having more surgery years down the road when the battery needs to be replaced or there's some other hardware failure.

    I know when I am in horrible pain that isn't being treated properly, that just about anything "looks good" as long as it carries the promise of pain relief. If I had to choose between doors one through three and I found out after selecting the SCS door, that behind door number one was a permanent surgical fix, I'd never be happy and would always wonder.

    Anyway, those are my thoughts. I would never recommend an SCS to anyone who hasn't reached the point of "there's nothing else ANYONE can do".

  • I guess I focus on my situation too much. I was told I had permanent nerve damage and that nothing would help, yet a new doctor refused to help me until I did all the same 'ol injections, etc. I had already done them to no avail. (We had moved and I had no choice but to get a new doctor).

    I agree, if there is something that can be done, it should be. But did I have permanent nerve damage even before the surgeries? I had this same pain then as well. Each surgery was to "fix" that pain, yet never did and with each surgery came the risk of more and more scar tissue. I never had a discogram and I just wonder if that would have changed my treatment plan.

    When I got my EMG results, I was relieved to have a diagnosis yet mortified to have such a lifetime sentence of pain. It took a year from that point to get the SCS that was promised me by the former neurosurgeon. Guess we shouldn't have moved - didn't know it was such an ordeal to get.


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