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Back from SCS trial



  • Since my SCS is cervical and not lumbar, I have not experienced the exact issue with stimulation of the groin, however I think it is similar to a c-spine SCS causing stimulation of the chest wall. Depending on the pulse width of my signal, I can either cause the chest wall to be stimulated or remove the stimulation from that area. It's uncomfortable to the point it can take your breath away. By simply modifying the pulse width I can pull he stimulation out of there.

    Also depending on how the leads are set up to fire. Usually in lumbar SCS's, the idea is to create a more focused signal that is driven deeper, because the dura is thicker in the lumbar region and it takes a bit more juice to get the job done. However it can also cause muscle spasms if it it too focused for the individual.

    To illustrate this, you will find that those who have c-spine SCS's, will run their IPG at lower amplitude settings than those with L-spine SCS's.

    Another thing about neurostimulation, is that it can trigger the bodies natural endorphins, which is something I use to my advantage. In the morning or any time during the day that I have that "I can't move" ache, I will position myself for a max coverage "treatment" for about 15 minutes. After doing that, I have fewer aches and pains and can tackle the day.

    Dave, I found that I almost felt guilty for not needing the use of narcotic pain meds anymore thanks to my SCS. I feel like I have an advantage over most other CP sufferers, simply because I can "treat" myself anytime, anywhere and no one is the wiser.

    Okay now I'm rambling. Good luck with the trials over the weekend.

  • Yesterday was a really good day with the trial. I went shopping, had my daughter's party (which went great), made dinner for my family with little pain. I only ended up taking one norco (and I took it when I felt I needed it) all day when I usually end up taking about 3 of them. So I feel like this thing is a success so far.

    I turned it off at night since I felt I didn't need it. Today I am going to be doing more shopping at the mall with my mom, see a movie and dinner. I think it will be another good test of the system.

    They wanted to take it out on Monday, but I was originally thinking about asking to have it left in until after I went into my office on Tuesday since Monday is a holiday. However, I am now thinking that I really don't need to do this and may just have it taken out on Monday so that I don't have to take any more leave from work. Right now I am thinking that I will need that leave for the SCS permanent surgery. But I am waiting to make my decision until after today.
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  • One thing that still concerns me, is the fact that you have only had 2 surgeries and your pain can be controlled by 3 Norco. Please do not think that I am trying to diminish your pain or say that you aren't having a tough go of things. I'm not. What concerns me, is that most people do not realize what it is like to be burdened with a permanent SCS implant. While some doctors seem to tell their patients that it's no big deal to remove the SCS if they determine you need further surgery, the reality is, that most don't want to touch you once you have a permanent implant.

    Please just know that it's not something to take lightly. It's not like a coat that you can take off when you want. Your life changes forever. It's a change that no doc or rep can prepare you for or warn you about. Unless they have one themselves, they will not truly understand.

    Yes it is a fantastic pain management device. Yes it has helped a lot of people. And obviously from what you are saying, it has helped with your pain. The question to keep in mind though, is are you willing to give up on a lot of freedoms that you now have?

    Our bodies have quite a remarkable ability to survive the insult from medications and supplements. I have taken a fair share of them for many years and will continue for many more. Monitoring through regular blood work and check ups keeps me and the doc apprised of whether or not they are causing me any issues or risk of long term exposure. If you strap yourself with an SCS and still require the same meds, only at a reduce dose, are you really gaining any ground? I still take the same meds I did prior to getting my SCS, only difference is now they are able to handle things better. I cannot have an MRI, so if I have an issue later down the road, it will be more of a complicated issue to determine if surgery is warranted or if it can or cannot be done.

    Anyway, just don't get caught up in the "excitement" of the day. Think things through and make an informed decision.

  • I have to agree with "C" 100%. You are so very young to have an SCS implant. I am amazed the Doctor did it for you.
    If you should require an MRI down the road you will not be able to have it.
    Sure they tell you it can be removed but that is easier said than done. Once you have it, it is with you for life.
    Please think long and hard about the permanent implant.
    Just my thoughts and my thoughts aren't worth much.
    patsy W :H
  • I appreciate your comments. Can you please tell me more about the freedoms that you have had to give up and the effect that it has had on your lives? I really want to know more. You can PM me if you want.

    I think it would be a stretch to say that my pain is controlled on 3 (or 4) norcos. That is what I take. I have been in pain every day for the past 7 years. I don't take more because I can't stand how it makes me feel. I HATE the foggy headness and other side effects. I am still working full time, but I really struggle to do so. I believe that I have only maintained my job because my career has always been very important to me and I am the primary breadwinner for my family. Plus my boss lets me work at home twice a week. But my career has suffered, many times I am a grouch to my coworkers because of the pain. My friendships have suffered, I don't do many outside activities besides work. I can barely make dinner for my family in the evening because of the pain and my husband has to do most of the household chores. There have been so many times that I have told my daughter that I can't play with her because I am in pain.

    I know many of you are much worse off than this, so I don't expect sympathy. It was just to let you know where my quality of life is at with the norco. My Dr. thinks the SCS is a better alternative to the meds. He said because I am young is part of the reason that he wanted me to try it out. Over the past two years he has tried every alternative under the sun.

    I have decided that I am also going to make an appointment with my general practitioner, who I also trust to discuss the pros and cons of where I am at. I understand about the MRI, and it does make me nervous. I don't take it lightly. But I am hoping that since some of you now know more about where I am at you can tell me more about the freedoms I would loose. I already feel like I have lost a lot.

    Oh, and I am now 38. I haven't updated my siggy. :)
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  • As far as the burdens of the SCS.. there are the little day-to-day things, like watching what you lift, how you twist, etc. Even once the leads are fully scarred in and migration is less of a risk, there's always an awareness in the back of your mind. It's a little tiny voice, reminding you that even though your pain is better, you're still not normal.

    While we're reading forums, researching, and/or discussing the SCS with other patients and our PM's, the whole notion of neurostimulation becomes somewhat commonplace. It's very easy to forget that neuromodulation is truly "cutting edge" technology that is rapidly evolving and a lot of doctors don't have the slightest clue what it is or how it works.

    Within a few months of my permanent implant, I found my balance between the SCS, medications, and physical rehab. I've been seeing my pain management doctor monthly and we've made little tweaks, but overall I've been very stable. With my pain managed and my stress reduced, it seems like a lot of my other problems resolved themselves (repeated colds, flu, etc) and I've have only had to go to my PCP a few times.

    About a month ago, I fell off the proverbial pain management wagon and a couple of weeks ago, the whole thing turned into a big mess. I had a medication reaction that involved my patches, so the only ting I could do was take them off. Obviously, that caused a huge problem and like all good reactions, the worst of it hit on a weekend.

    The reaction caused multiple ER visits for uncontrolled pain and the trouble started with the triage nurse. I told her about the SCS, then she clicked around her computer for a minute, but couldn't find the procedure to add to my history. I gave her the alternate names, but she still couldn't find it. Finally, 3 nurses and 45 minutes later, they seemed to figure it out and go on with my history.

    When I finally got to see a doctor, he said the first thing he had to do was run some cardiac tests, because my blood pressure and pulse rate were dangerously high and according to my history, I had a pacemaker. It turned out the triage nurses didn't find the SCS in their computer. Since the thing I was describing sounded to them like a pacemaker, that's what they added to my history.

    By that time, it had been well over an hour since I arrived at the ER and I'd spent 90% of that time just trying to get them to understand the SCS. My pain issues still hadn't even been approached, much less treated.

    I finally managed to convince the doctor that I didn't have a pacemaker and that my blood pressure was dangerously high because my pain was way out of control. He agreed to give me an injection for pain, then reassess all my "cardiac" symptoms.

    About 20 minutes after I finally got the injection, the nurse came back in to check on me, I told her I thought the shot was enough on the medication front and that the SCS could probably cover the remaining pain if I turned it on. She got all wide-eyed and said she needed to ask the doctor before I did anything.

    The next thing I know, I'm signing a waiver saying that the hospital and staff were not involved in my decision to turn on the SCS and that if "something goes wrong" then I'm not going to hold them responsible. They didn't even have enough knowledge of the SCS to explain what "something" they thought could possibly "go wrong" - but they knew they didn't want any part of the responsibility for me using it.

    When you find yourself in a situation where you're working with a doctor that doesn't have a working knowledge of the SCS, whether it's in the ER or a routine appointment for an unrelated health issue, the SCS can wreak all kinds of havoc on our care. Some doctors blame it for things they can't figure out, others are so afraid of it they barely manage to assess you properly. In the end, you really have to be able to advocate for your own care and make sure you're not getting blown off because, again, you're still not normal.

  • BionicWoman outlined a very real issue that the SCS presents ... ignorance. Although neurostimulation has been around since the 1960's it is still not as widespread and widely used as many would think. BW is correct in that you can easily get a misleading impression from reading about it here and a few other places on the Internet. Of course like any others, docs like to try the latest and greatest tool in their arsenal against pain. After all we are there asking for their help. They start with the basics and work their way from there.

    One thing that many spine patients don't understand until they've had a few experiences of their own, is that Pain Management docs don't typically look at whether there's any surgical "fix" to your pain issue. They are there to address the pain in manners that neurosurgeons and ortho surgeons cannot or will not. So many of them put blinders on to the potential of someone being fixable with surgical intervention. Many patients are sent to Pain Management because they have told their surgeons that they don't want to undergo any more surgery. So it's like getting referred to a paint shop when you need body work, engine repair and upholstery work. You get a fresh coat of paint, but still have dings and dents and torn upholstery.

    Living with an SCS is an every day every moment thing. Even though you get used to the stimulation, your pain or the SCS will remind you at the most inopportune moments that you are no longer "normal" as BW so nicely put it. Going to the store, a movie, to dinner, taking a shower, swimming, on a walk, to a wedding ... you name it, it all changes. You have to constantly be alert to ways you can damage the SCS or hurt yourself. Bumping it, bending too much, lifting too much, wearing the wrong clothes, sleeping in all but one position, charging, having your charger with you when traveling, having your patient programmer with you ALWAYS. Security systems are a chore and if you travel by air, expect to be hand searched every time. I just about came unglued on a TSA agent who nearly flipped my IPG in the pocket, trying to make sure it was under my skin.

    A flipped IPG will call for surgery to flip it back, otherwise you will be unable to charge. Finding the right way and time to charge takes a lot of trial and error before coming up with something that works for you and your family. Planning any activity also means planning your charging around the activity. Sitting in many standard seats is uncomfortable due to the IPG either being pressed on or your clothes pulling on the IPG. I constantly have to take anti-inflammatory meds because activity causes inflammation to develop around certain parts of my SCS. So there's a med I wouldn't be on were it not for the SCS itself.

    I've had my SCS since May of 2008. In April of 2009 I underwent 2 revisions to repair the system that I tore loose through activity. Of course in a few years I will have to have surgery to replace the IPG when the battery gives out. So if avoiding surgery is anyone's goal for getting an SCS, they are sadly mistaken or misinformed.

    Because I can appear to be very normal and active, most people do not know I have an implant. Many jobs that I would like to apply for, I cannot, because I can no longer do some basic things. One of my big concerns is performing CPR or any BLS. I normally work in jobs that require CPR and BLS certification to be kept current. Now don't get me wrong, if need be, I'd jump in and take what ever actions were necessary, but I can guarantee if I were to perform any of the such, I will most likely rip part of my system loose and require surgery to repair it.

    Automobile accidents are notorious for causing lead breakage, requiring complete removal and replacement. There's no guarantee that the doc can get new leads back into the same area the previous ones were in and no guarantee of coverage as good as it was originally. Also if there is any issues with say for instance signal strength reduction, most docs and reps will try to reprogram and take a wait and see approach to see if complete failure will occur. In April when I underwent the first revision, I had great coverage for a week when suddenly the coverage dropped off on one side. I ran a lead diagnostic and found that 1 out of the 8 contacts on 1 lead was failing. The rep verified this with his unit. Now keep in mind I have an outstanding rep and doc. They both told me that were it not for the fact that I lived over 7000 miles away, they would have taken a wait and see approach. Since they couldn't do that, it prompted them to further investigate and they found one of my wires sliding in and out of my IPG that required pulling the IPG out of the pocket to repair it. They could not understand (it was beyond their ability to comprehend) that I could feel such a tremendous deficit in the function of my SCS. They consulted with the technicians and were told that I shouldn't be able to notice much if any deficit in performance. They were wrong.

    So basically even with such an outstanding team, had I been a resident in the local area, I would have had to deal with this until such time as the wire pulled out completely or something else failed. These professionals all mean well, but they really do not understand what these systems they are implanting feel like to the recipient.

    I could go on and on, but I hope you can begin to see that although neurostimulation has given me a chance to live again, it is not without its price and not the "walk in the park" that the videos and doctors and reps all want you to believe. It is a huge personal responsibility for me as well as my husband and health care providers. It has changed my life forever and forever changed my life.

  • I love to post a comment after Bionic and "C" because they say it so much better than I can but I agree 100% with them!!
    Your young age really concerns me. You never know what will happen down the road. I have 2 spinal fusions and thought nothing more could go wrong with my spine. Well it is not my spine I am having a problem with. It's my shoulder!! I need an MRI to see what is going on with it but can't have one. I can only hope my Ortho can figure it out with x-rays and his knowledge of joints without the MRI.
    Also a lot of Doctors think that once you have a stimulator you no longer need pain meds and nothing is further from the truth. I am sure Bionic and "C" will both agree with me on this.
    As Bionic are never "normal" again. You always have to be aware of your implant and there are a lot of things you can no longer do and as they both said a lot of problems can crop up.
    You have to live with it the rest of your life. You have a very long life ahead of you.
    I know the thought of some pain relief sounds wonderful but if your pain can be managed by oral medications I would not have the implant yet.
    These are just my thoughts and at times my thoughts aren't worth much.
    Patsy W :H
  • Age is the one thing that doesn't actually concern me, but I guess that's because I'm ;)

  • I appreciate all of your thoughts and input. I am one who truly believes that the more information that I have the better. I want to make my decision based on the complete picture, so thank you all.

    You don't know how many times I have heard, "But you are so young to have back problems". My reality, like many of you is that my back will never be "normal" regardless of my age. I went to my PCP today and had a long discussion with her regarding the pros and cons to the SCS vs meds. She was really helpful.

    I got the SCS taken out late this afternoon because the corset was irratating my skin so much and I am already off work. I know that without a shadow of a doubt that the SCS greatly helps to reduce my pain. The usual pain is back and I already miss the SCS. As I said before, my pain is not managed well at all by the current pain meds that I take.

    Again, thanks again for all of your input. I have a big decision to make. I have to determine what is in not only my best interest, but the interest of my family. I have a responsibility to be the best mother I can to my 5 year old, and that is my top consideration.

    C, by the way, I actually laughed at the glowing videos from Boston Scientific. Believe me, I know how these companies make the SCS sound out to be all sunshine and roses. Part of my current job for Medicare is reviewing marketing for Medicare managed care plans so I know just how far companies can try to steer people for their profits.
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