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One Year In

davedave Posts: 860
edited 06/11/2012 - 8:48 AM in Spinal Cord Stimulation
Today is my 1 year anniversary for my stimulator. After a year, I'm still very positional but have adapted my life to it. I go no where without my remote. It's not as effective as I hoped it would be. Now that things are settled down, it supports about 40% of my pain. I've turned my stimulator off maybe 5 or 6 times over the last year. Each time does result in increased pain..

The thing I hate the worst about the stimulator is charging. I find it to be a pain. I charge once a week on Sunday. Charging time usually takes between 2 to 3 hours.



  • Dave:

    I am considering the spinal cord stimulator and was wondering if you are still taking meds? Since your pain level is reduced by 40%, have you also reduced the amount of meds you take?

    You also stated "Now that things are settled down" - what kind of things were you experiencing prior to things settling down?

    I greatly appreciate any info you can give me - I am desperate at this point in my life and need some relief fast.

  • Dave,

    I am also interested in hearing more about your experience -- good and bad.

    Thanks for sharing!

  • Happy anniversary dude!!! May the Remote be with you always! :)

    It's really a bummer that yours is so positional, but 40% relief is better than no relief. I wonder if they had used surgical leads instead of percutaneous, if you would have more stability. (just thinking out loud).

  • What is the difference between surgical leads and percutaneous? I have not heard of percutaneous yet - any info would be greatly appreciated!

    My PM doc has suggested using the SPS manufactured by Boston Scientific - anyone using this device?

  • Happy Anniversary on your 1 year SCS experience.

    Thank you for sharing how much relief you have received and how the battery charging has been the biggest "pain" for you.

    I am glad you are getting about 40% relief, as any relief is always welcomed.

    May I ask how much medication reduction, the SCS has allowed you to have?

  • I would suppose knowing my diagnosis would help in understanding what my stim is supporting. I have Adhesive Arachnoiditis at the L4/L5 and L5/S1 nerve roots on the left and right side. I have burning pain just below my knees to my toes. With that in mind, its a tall order for a stimulator to treat all of those areas. When I did my trial, we targeted the worst areas which are my calves, bottom of my feet, and toes. I've since been reprogrammed to cover my shins and the tops of my feet. None of my programs help 100% but some areas are better supported than others. My problem is progressive, so I push this thing pretty hard. The burning has gotten worse over the past year.

    I hit a cross road last year. I can't take the nerve medications and the opiates have an adverse effect on my digestive tract, more so than the average bear. My choice was to either succumb to higher doses of ER meds or try the stimulator. It's hard enough working with what I take now, to submit to higher doses would have ended my career as I know it. I have no desire to retire anytime soon. I really enjoy what I do for a living and I have 2 daughters quickly approaching college.

    My leads are at T11/T12 for the right side and at T12/S1 for the left side. Normal placement is a little higher T8 to T10, but because we were trying to reach such a wide area we opted for a lower placement. Toes are really hard to do. To answer your thought C, I don't think surgical leads would have made much of a difference. The spinal cord ends right where my leads are, so all the nerves and the cord move a lot at that spot. My actual what if scenario is "what if my leads were a little higher?". It's really not that big of deal regularly changing programs. I estimate I change programs 15-20 times a day. You get used to changing the program that it becomes second nature. Of course I do forget the nature of things a lot and my pain levels are always accommodating when I do that.

    To answer your question Chris, I take less drugs than before my stim, but I take more than when I first got my stim. Basically, I'm getting worse, fighting a loosing battle.

  • A percutaneous lead is a long cylindrical lead that is inserted into the epidural space via a 14 gauge needle. Surgical lead are shaped much like the end of a canoe paddle and are surgically implanted into the epidural space via a laminectomy. Paddle leads are becoming more popular for lower back issues since the epidural space is larger there and the paddle leads are designed to better fill that space and provide a more consistent contact and signal. Percutaneous leads are more commonly used in cervical SCS setups due to a thinner dural covering over the spinal cord and less epidural space. Also with the motion of the cervical spine, paddle leads are more likely to fail in that area. Percutaneous leads are far more flexible.

    I have two percutaneous leads in my neck and like most c-spine SCS systems, mine is quite positional. I have learned to compensate for that and don't even notice when I am doing it any more.

  • Before my stim I took a 120mgs of morphine sulfate a day and up to 30mgs of oxycodone for breakthru, which I used up the max on a daily basis. I now live off of 40 mgs of oxycodone a day. I've been holding off on asking for an increase for some time, a bit stubborn in that department. My goal is to make it to the end of the year at my current levels. Every day I manage at this level is one day gone and then there is tomorrow. I take my pain one day at a time.

  • The medication information is helpful to know.

    And, like you, it's just taking it one day at a time with our pain.

    I sometimes wish it was limited to just two pain sources, which most would agree with.

    Wishing you continued success with the SCS and hopefully, less need for medications.

  • Dave, I guess at this one year point, 40% is better than nothing, isn't it? My one year anniversary was on Saturday (11/13). There is a part of me that is so glad I have it because it has helped me sleep better (not something I anticipated) and it has been programmed to cover a new problem that started after my SCS surgery that was prompting pain in my left arm. Unfortunately mine never did cover the pain area in my upper back that it was supposed to target. I have found that it is much more effective on the extremeties (arms and legs) than in the area around the spine.
    That is a tremendous decrease in your meds, though. Congratulations.
  • I've had to learn to suck it up. I would be much better off if I took more meds but then I wouldn't be able to function.

  • Mine will be put in next tures so welwill be 1 year apart., about the charging thing, mine will be Medtronic ultra restore and recharge every 2 weeks, how is this done? while we sleep? watch tv, work? do we just put a belt on and charge, I forgot to ask spacifics, thaks Rose
  • I have the same unit and I would be on empty if I went two weeks. You can not run these things down all the way. If you do the Rep will have to basically reboot it for you and that can only be done a couple of times. If the battery drains to many times then you will need surgery to replace the IPG. There is a belt you wear that holds the charger over the IPG. It doesn't hurt but it does get rather warm sometimes. It is not recommended to sleep while you charge because it does get a little warm and can possibly burn your skin. I find that if I move around while charging it takes longer, mostly because the signal changes and I have to run an activity program that consumes more power. I usually just watch TV while I charge so I can use one of my less expensive programs. My longest charging session has been 6 hours.

    I think your Doctor is doing you a disservice by telling you will only have to charge every other week. Battery consumption is based on what type of programs you have running. There are some on here that charge several times a week to every 6 weeks. It varies and I wouldn't get my hopes up on the time frame until you are there.

  • I would like to add that I'm concerned for you because of the reasons you are going down the stimulator path. I really hope that it does everything you want, but to be honest, I have real bad feeling. I'm concerned that your back is going to continue to worsen over time and you'll find yourself on the short end of stick. Please take the time to read BionicWoman's post in the Spinal Cord Stimulator thread, post #11. BW is very wise and was very helpful to me when I was trying to decide if a stimulator was right for me and she provided excellent advice post surgery. Maybe you could PM her to find out additional details about her current situation.

  • Dave, Rose, anyone -

    While researching the SCS I ran across this bit of information: Usually one or two hours of stimulation, three to four times a day is enough to relieve pain for the rest of the day. You should expect 50 to 70 percent improvement in your pain.
    The device should be turned off when driving and operating machinery or power tools. Spin University URL Removed

    From reading most of the posts in the forums, it appears that everyone keeps the stimulator on at all times. Am I correct in this assumption or should I expect to shut my device off as suggested by Spine University?

    I also want to thank each of you who has answered my posts. I am nervous about this device and am attempting to educate myelf so that I can make the right decision for me. Your comments and thoughts are welcome and appreciated.

    Yuck Neck


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    Post Edited by Administrator Dave
  • There is a lot of mis-information about Spinal Cord Stimulation on the Internet. I have a cervical SCS and if I turn it off, I am in a bad way very quickly. Mine has only been shut off for surgery to repair it in the last 2.5 years. I have to recharge once a week whether I feel like it or not and I recharge with the system running. I run three programs sequentially and they consume an average amount of power. I never let my battery drain below 25% just to be on the safe side.

  • I am convinced that no amount of medication is going to make me feel better. I would gladly take a 40% reduction in pain...
  • I have researched this everywhich way and read everything I possable could, in fact it was recomended after my lamnectomy in 2001, Im 51 years old and most likly my back as well as the rest of my body will deteriate and worsen. I in the pst years have sot out 3 differant Neurosurgeons in 3 separate citys, making sure I have all MRI reports form 2000 to my most recent in Feb 10, The 1st "fuse and pain will be all gone" I ran the other way, BS, so to another he said maybe fuse in a few years but not now, sent me to a pm that wanted to do epidurals, which inturn raised my blood sugar to 400 500 evan taking humalog and levimire inj, as you know High blood sugar is a killer, I also met with the NS after myscs trial and he said I did have a small buldge, but its going to go in and out, they can not do any more lamnectomys. For me personaly the SCS IS for me, and if my back gets so bad in many years to come, I will cross that bridge when I get to it. the DR also said more than likley charge every 2 weeks, DEPENDING on how long I run it how many leads and a numbert of things will determin the charging times, the Medtronic Reps were extreemly helpful and answere all questions, they call me at home after surgery, and each 3 days I had it, I had one of the reps personal # to call 24/7 for problems and questions. I feel I have this very well covered and hope it does meet all of my expectations, so far non of the inj,PT,drugs have helped. somepeople maybe jump the gun too soon, but I've been 10 years in hell, and that 3 days was HEAVEN, and the remark about not eating, same dif, you will choke, my 1 piece of toast eaten 6 hours eailer WAS out of my pouch I have a 4 ounce pouch from gastric bypass, and I/v had 6 surgerys this year alone, so I know if I can have a piece of toast and I'M always honest with the anatheseologist, as wll as the surgeons, and Ive not been sent packing... about what, and when I ate,I do appriciate the concern it was just a simple question, My drs> and medtronic reps will answer all of my questions, to make sure I'm imformed. I really hope I can drop most of my meds or at least decrease them, if not oh well, I guess I will take each day as it comes and hope each day gets better for all of us. Rose
  • Hey Dave, congrats on your anniversary!! I have a question or two in regards to your SCS and Arachnoiditis. I was diagnosed with it in March after my fusion surgery in Dec. I am not at the Adhesive stage yet, or it didn't show on my MRI. I noticed that you said it was progressive. I have the burning in both legs and also my back and buttocks. I am waiting for my SCS trial and looking forward to it. But I am wondering about the progression of Arach and the SCS. My back pain has been getting progressively worse over the last couple of months. Does the Arach get worse over a certain time span? I am concerned that the SCS may help in the short term, but the benefit may fade away over time. Again, congrats!! and I appreciate any insight you can provide. RJ
  • I can only answer as it pertains to me. At some time you will plateau. I believe I have finally reached that stage and took roughly 2 years reach my current state. Of course you always have to vigilant. Any type of trauma to the area that has the "A" can cause it to get worse. If yours isn't showing up on imaging, can I assume that its pretty much inflammation of the arachnoid layer, no scarring yet?

    So far the SCS works pretty well with mine. It does fall behind sometimes and I have to tough it out during those times. One thing I have found is the more that I walk and keep the nerves stretched the more stable I seem to be. I've been real busy at work lately and have neglected my exercises for the last couple of weeks. As such, my pain levels have jumped a couple of notches so I have been working this week to get back on track. Its a struggle when you slack off for a couple of weeks not to mention you end up lacking sufficient drugs to offset everything.

    I have a couple of question for you. Do your muscles in your lower legs contract regularly? Similar to fasciculation (twitches) but the muscles actually contract. Mine do this 24/7. I find it rather unnerving and sometimes I have to turn the stim down if the contractions are in full gear, its really uncomfortable to have both going.


  • Thanks Dave, for the info. From what the MRI report states, I have extensive scar tissue encasing the Thecal Sac and the exiting nerve roots, my PM told me it is Arachnoiditis. I am assuming that since the nerves are attached together, but still visible via MRI, that it is still Stage 1, or was in March. The burning and pain in my back have been getting progressively worse. My legs also seem to be weak, if I bend my legs at the knee when I walk, they are wobbly. I also do stretching and walk as much as possible. Yes I do get both fascilations, and the contractions in my muscles, weird stuff. Thanks, RJ
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