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5 weeks post-op, some things I wish I had known...

BelycBBelyc Posts: 49
edited 06/11/2012 - 8:53 AM in Spinal Cord Stimulation
I had a Medtronic SCS implanted 5 weeks ago, and I'm glad I did. At 4 weeks I was pretty much done with the incision pain, so now I'm managing the pain I had before with the SCS and oral meds. As I anticipated, and was told would likely be the case, the SCS does not replace pain medication, but it has reduced my need, and nicely fills in the gap where the pain medication was not working. A few things I wish I had known...

1. The Medtronic programming device has to be placed on top of the battery. An antenna extension is needed if the battery is located in a place where the patient cannot read the screen or see the controls. (this means an extra component to carry) I would have given much more thought to battery placement had I known this, and specifically asked for it to be placed where I could see the programmer.

2. The Medtronic rep set up a program in the hospital post-op, and on my follow-up visit with the doctor we were to fine tune it. I was driven to the appointment and had the device on until I met with the rep. I should have been told to keep the device off for 30 minutes before the appointment. When the device was shut off, I was feeling the numb after effects of having it on high, and I could not feel or could barely feel the adjustments the rep was making. The end result is the revised program was less effective than the original. I'm waiting until I'm 12 weeks post-op to meet with them again, as I'm told as it continues to scar into place, it may move, so I don't see any point in fine-tuning until then.

3. The pain reducing effects of the SCS may not be instantaneous. (they're not for me) Although the device turns on within seconds of being activated, it takes between 15 & 30 minutes before the pain reducing effect reaches a satisfactory level. I assumed that once activated, the pain reduction would be immediate. Once it's been on for a bit, it's effective.

4. If you can manage it, sleep with it off. Sometimes I go to sleep with it on a lower setting and turn it off in the middle of the night. If I sleep with it on, I end up using it at higher levels during the day as I become used to it at night. It's also good to turn it off or change programs during the day so you don't become too used to it and have to ramp it up very high.

5. Discuss unlocking pulse width with the rep. I am technically inclined and worked analyzing databases and mapping data, so I'm very good with recording data and analyzing results. This control is definitely not appropriate for everyone, but for me, it made a huge difference. It takes time, experimentation, and record keeping to get good results (remember to record your original settings!), but it can make a huge difference.

Having recorded all this, let me say these results/observations are specific to me and I'm not saying they're the same for everyone, but take them for what they are, food for thought.

Best of luck to everyone in managing your pain. I know it's difficult and often frustrating, but keep at it! With the right doctor, great things can be accomplished.


  • Another item I forgot to address:

    Think about how you will recharge the battery, assuming you have a rechargeable. The Medtronic come with an elastic belt into which the recharger disc snaps. The battery pack is attached by a wire and designed to be worn on a belt, allowing mobility. (You can also sit in a chair or lie down and have the battery sitting nearby) When it comes to battery placement, also consider your body shape. If the surgeon implants the battery in a location where the elastic belt is prone to move a lot or slip off, then you have to sit or lie down while recharging. Also, if the battery is located where you can't easily see or feel it, placing the recharger can be frustrating. Ask the Medtronic rep to let you try on a recharger belt if you have any concerns.
  • Welcome to Spine Health. Thanks for outlining your personal experience with your SCS throughout the first 5 weeks. One of the great things about neurostimulation, is that it is unique to each individual. While I have had some experiences that may be similar to yours, I have also had experiences that are totally different.

    For instance, I initially thought that it was a pain to try and make adjustments to my IPG because it is located in my right upper buttock area. I found that in no time making adjustments with or without the antenna are very easy. As the SCS system became more intuitive the adjustments became easier and easier to make with simply holding the patient programmer behind me and manipulating it by feel and by memory. So I haven't found it necessary to carry my antenna with me in over 2.5 years.

    I cannot shut off my SCS for any length of time. We found that out just prior to my revision surgery when the rep had me shut it off in pre-op. Now it is left on until I am under anesthesia and then turned off.

    When it comes to reprogramming, I always have the rep save my current programs and print it out before ever letting him/her try and develop new ones. I also make certain that I have a full battery charge before any doctor appointment or reprogramming session. Reprogramming can drain a battery far faster than normal use or using TargetMyStim.

    I sleep with mine on or I would never sleep. For the first 6-9 months I had to turn it down at night, but since then I leave it set.

    Everyone seems to find a comfortable time and place and method for recharging. For the longest time I could only recharge while sitting back in my recliner or lying in bed. Now I am far more mobile during recharge. It's all a matter of learning what works for you. Finding the location for placement of the charging plate is easy after a while and I can pretty much hit 100% signal integrity first time/every time.

    Glad you are figuring out what works for you. I wouldn't be surprised if you find yourself modifying your routine a bit, the longer you have your SCS.

    Kindest Regards,

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  • I think you're quite right about modifying routines. I've tried the programmer without the antenna and did manage to make the change I wanted, but I had to really think about the steps first. I imagine over time I'll get better with it. My battery is on my back, just under the rib, so reaching around and manipulating the programmer is a bit awkward, but I plan to practice.

    I didn't realize the reps could print the programs. I'll have them do that next time. I realized after this first reprogramming that I need to have them save the last good program on there so I can revert to it if needed. He was rushed at my appointment (they originally tried to cancel) because it was a heavy OR day, so I think he may have been distracted.

    I would prefer to sleep with it on low (and have), but then during the day I have to ramp it up pretty high. I'm hoping when I next have it reprogrammed that the changes will make me more comfortable leaving it on at night.

    I'm still early on with it and expect over time I'll get it pretty much how I want. Clearly it's a process. I'm definitely glad I have it, tho, and would do so again.
  • Ah yea, figuring a spot for the ipg will leave you feeling insane. I mapped mine out for the right front as that is my problem side, so theoretically I could still sleep on the lefy WRONG. The PM placed it exactly where is did NOT want it right right rear/side so I can't hold the antenna without cramping. It's a real blast to change programs etc; recharge is 3 hrs +- of sit and wait.

    Mine has been in 2 years, honestly, you can fight kick and scream, or if it works you adapt. We are the smartest creature we know of and so that is what is often best. ADAPT.

    Not trying to scream, holler or yell. Won't even say I'm happy and mine hit its 2 year anniversary on may 4th. I do the best I can and don't expect the "miracle" I wanted for the last 5 years.

    Let's face it, we screwed up...or most of us did this on our own anyway. We screwed up. Adapt, do not expect zero pain, just make it as good as you can and keep at it.

    If you are one of the very few you will find the "blend" and truly have it all back. Just remember damage is done, easy to be redone. Usually not a 2nd miracle.

    be careful out there! (Hillstreet blues)

    Oh, always make the doc mark where he is cutting you. Mine did not and I got a right side ipg instead of right front, very difficult for me to work with the antenna. I am not letting them cut me anytime soon so I just make do.
  • I've played with it, and I've figured out how to use the MyStim programmer without the antenna. The programmer has to be over the battery to sync, turn on and turn off, and to use the '+' & '-' buttons. I can remove it from the battery location after syncing and flip through the screens I want with the direction button. When I get to the area I want to adjust, I put it back over the battery and '+' or '-'. I still use the antenna at home since it's easy, but on the road I just take the programmer. I'm stuck with the inconvenient battery location, but I'm learning to make it work.

    I have an appointment in 12 days at the pain doc's office, and I've decided not to wait, but request a Medtronic rep be there. I'm having to ramp my right leg around 8 amps or so, and it uses a lot of juice. I know coverage can be more effective at half that rate, as it was on my initial program. The other spots are OK.

    I'm also sleeping with it on low now, and that depletes it even faster, but it's worth it. I've tightened the recharger belt so much that I can wear it with light activity, even if it is uncomfortable. Better to sit or lay and watch some videos, but not always practical. I'm in the adapting process, as Wrambler mentioned. Since I have it, I darn well better make the most of it. And it is making a big difference. I'm only taking meds twice a day now, so yay for improvement!
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  • I wanted my IPG in my abdomen, but the surgeon put it in my back also. In the beginning, I hated having it back there because I couldn't see what I was doing. Eventually, I came to value the focus on the sensations being right, rather than being distracted by the number on the screen, but I still hated having it back there for a variety of other reasons.

    After almost 3 years in my back, my IPG was moved to my abdomen this past February. Now the remote is right in front of me when I'm making adjustments and I don't look at it.
  • I went to my pain doc today & also had a Medtronic rep come as I wanted a new program. As 'C' suggested, I had my current program left alone and had the Medtronic rep start a new program from scratch using the notes I gave her. (thank you for the idea) The result is a program that captures my problem areas completely. <:P This is my third programming, and at last I'm very pleased with what's on there. What I had been using worked, but not as effectively as I knew it could based on my trial and first program. I'm soooo happy now. I've cut my pain meds in half most days. Intensely busy days I still take the max, but 6 out of 7 days I've been 50% better. I hope this new program bumps that up to 75%. My goal was to have 50% of my days medication free, but it doesn't appear I'm going to even come close to that. Even so, a 50% reduction in pain meds makes me very happy!! :)))
  • I wanted my SCS to take care of all of the pain too, but when it stopped working several months ago, I realized just how much it had been helping! Even though I'm still on a combination of treatment with the stimulator, muscle relaxer and two kinds of pain relief (extended and breakthrough), it is so worth it when the combination gives such relief! So glad to hear your good report. I'm scheduling a new programming session for this week myself to add another program since they only gave me one on my initial setup after mine was replaced 4 weeks ago.
  • My PM doc proposed extended release meds a while back, and I think they would be beneficial, but I'm afraid to take them. I'm already (somewhat) opiod tolerant, and I'm afraid if I take ER opiates, in 20 years I'll be so used to that class that nothing will help. I take 1600mg/Neurontin, 15mg/Mobic, and 20mg-60mg/Percocet every day. Without the neurostimulator it's not nearly adequate. With the neurostimulator it's good enough 50% of the time, and the other 50% the pain is only diminished (to what degree varies greatly with activity). At this point I'm willing to live with my improvement as it is...it is worlds better, and I'm still on SSDI and not working so my activity level is low. I do want to go back to work, part-time to start, and once/if that happens, I'll probably have to add the ER and lower the Percocet. It just makes me nervous.
  • My extended relief is a low dose Fentanyl patch that I change every 3 days and the breakthrough pain is handled with Lortab. Am I comfortable all the time? No! But I'm so much better than I was that I'm of the opinion it is enough for now. I know a time will come when more pain relief is necessary, but I'm able to work full time (just back to work full time this week since my surgery), and as soon as my surgery restrictions are lifted in two more weeks, I'll be able to do anything I want to within reason. I can't wait!
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