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Update SCS Trial - Day 4, FINAL update 12.9.08

cherish22ccherish22 Posts: 706
edited 06/11/2012 - 8:25 AM in Pain Management
Well, here I am winding down on the last day of my trial. It will end tomorrow at 10am. :''(

It has been amazing, truly. I have spent almost each day out and about, taking it easy enough that I don't over do, but doing things I could never do without the SCS. (ANS Eon Mini in my case.)

Until today, my sensation has been that I am buzz...buzz...buzz...buzz. When I was buzzing in the wrong place (front of my legs), I had a constant buzzing. Simply the difference in programs. So today, my programmer changed it to have the constant buzzzzzzzzzzzzz which I prefer. That is just personal preference I was told.

Saturday night, I did feel some "old pain" coming through. I commented to hubby and he asked if I had turned it off at all. I had not. So I turned it off and the pain disappeared!! The after-feeling of turning it off is a strange one. Hard to describe - a really pleasant sensation. I kept it off for 4 hours! I was very surprised.

When I turned it back on, my perception of the sensation was stronger, so I turned it lower. By today, the program I had was "too high" and I kept it turned off. The programmer tweaked it, lowered the range I have to adjust it (20 clicks total up or down) and I was good to go. Hope this makes sense.

When I first turn on the unit and pick a program, the unit sets itself to what they call the "perception" level. At that point, I can click the buttons up or down depending on how much I want to feel it - personal preference. The programmer controls those settings. Right now, I have the perception set at 40 MHz, out of a possible 1200 total. This is purely personal preference and that is why the programmers try many different ones to see what you like, what feels good, what seems to cover the pain, etc.

Dealing with the unit, cables, remote control, fanny pack (purse attached to a belt around my waist), etc. plus no bathing (just sponge baths) has not been at all as bad as I expected. I can't wait to take a shower tomorrow, but I have managed. Probably because the pain relief has been so great that the inconvenience otherwise has been barely noticeable. (I did go to the salon 3 times to get my hair washed and styled, though. lol Can't bend over or raised my over above my chest per the rules to be able to wash it on my own.)

For anyone reading this new, I have radiating, 24/7 burning nerve pain in my left leg. (EMG shows permanent nerve damage.) Not much back pain, although I've had 3 surgeries. I am a "best case" candidate based on type of pain I suffer. I have probably had 75% average pain relief, which compared to the 0% I did have, is a life-changer!! :D :D

Good luck to everyone on this pain journey. I pray we all find relief in whatever way is best for us.

Hugs to all,

Cheri
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Comments

  • Glad that your trial has been a success. The feeling I get when the SCS is switched off is like suddenly deflating a balloon. I hope that makes sense. Too me it is a sudden sense of longing, where I miss my best friend. The only time it is a welcome relief, is if I have my levels set too high.

    The SCS gets your body to kick up and release endorphins, this is why many times you can turn the SCS off and still have relief for a while. Early on I would use that window in order to get to sleep without having the SCS running all night. Now, I leave mine on all the time and just adjust the levels accordingly.

    I don't know what kind of capability you will have with your permanent implant and programmer, but with mine I have the capability to shift contacts on both leads, adjust the voltage, adjust the frequency and adjust the pulse width. This gives me quite a bit of flexibility and definitely a great sense of control over my own pain management. I haven't seen my company rep for 6 months since I have the capability to reprogram myself. Kinda cool!

    One thing that I have found, is that just as we all sense pain differently during periods of illness, exhaustion, monthly cycles and heavy exertion, so does the feel of the stimulus.

    Anyway, I hope you don't have to wait too long for your permanent implant. Best of luck.

    "C"
  • Cheri,
    I am so glad to hear everything is going well with your trial. Isn’t it nice to have some king of different relief from the pain? I have been super busy around the house and work and the kids are just a little overwhelming this month getting close to the Holidays. I hope you move forward with the permanent. I am going in on the 22nd of this month to get my implant repositioned. You have seen my pics. I saw the neurosurgeon last week and he said that the skin is becoming too thin and I am bruising too much. It's sometimes trial and error. Since my unit is non-rechargeable he said he could put it deeper into the tissue. I think a little lower, rotated 90 degrees and deeper will be the most he can do. Anyway, what kind of contacts are you going to get? The paddle kind or the wire leads? Don’t stress about the trial removal, it feels a little weird but doesn’t hurt. Keep the info coming, lots of comparisons for people to do. Back to crazy 8} kids.

    Oh, you will really enjoy taking a shower once you get home. Having the trial is like camping for a long weekend....

    :H
    Bobby

  • I am in a trial SCS now too & it sounds like I have the same one you do. I appreciate the info about the changes with illness etc. I never thought about that. I can relate to the "deflated balloon" bizzare isn't it?

    Cheri I'm so glad you're having great success. I am too but it is VERY positional...my low ribs are taking beating in certain positions. I have to give mine up tomorrow, if I show up!! hehehe

    What I was wondering is do you guys get a different or rougher stimulation after it's been on for awhile on a high setting?

    Thanks everyone
  • I guess to answer your question, I would say sometimes I become a lot more sensitive to it if I have been running it on a higher setting for an extended period of time. What I do is adjust the amplitude primarily depending on what I am doing. For instance, when I drive I adjust the intensity up in my right arm and hand and leave my shoulders at daily norm. When I go diving, I have to adjust both arms and hands to a middle of the road setting, because if I leave it high, my camera will shake. When I go to the gym, I adjust shoulders and arms and hand up and then bring them back down when I'm done.

    If I am having a pretty relaxed day, I will have my settings at a comfortable middle of the road setting and leave it there all day. Only time I would change that, is if I start getting a lot of breakthrough. When I start thinking about ripping my hand off and throwing it in the trash, I know it's time to increase the stim.

    One thing I have discovered is that initially I thought I had to have the highest settings that I could stand running all the time. This was physically exhausting for me. Once I figured out what works best for what activity, things became a lot more comfortable.

    With the trial stim I was getting a lot of chest wall stimulation. This went away with the permanent implant.

    Sorry to ramble on. Best of luck with the rest of your trial and perm implant.

    "C"
  • I know what you mean about showing up! lol For me, yes, when I would run it stronger, I would notice that if I turned it off for a while, I couldn't tolerate it that high the next time I turned it on. I kept turning my down and down and down, which I thought was great. I'd rather do that than get used to it and have to turn it up and up and up.

    Just had my leads removed this morning - it did not hurt, although I was worried considering my procedure pain. (Was told today again that my experience was freakish and never happens - I'm just special. ;))

    The doctor and clinic are working ASAP to get me into the neurosurgeon as quick as possible. In the room to my face, he said it would probably be after Christmas due to the holiday. But then in the hall, we heard him telling a nurse that the NS said he'd try to work me in next work. Can you even believe it? Could there be such an answer to prayer??

    I hope hope hope hope so. =D> =D> I know that would truly be a long shot, but he did say it to the nurse!

    Good luck with the rest of your trial. I was very teary last night and hubby just comforted me. I didn't want to get the leads taken out and face my pain again. This morning, I teared up in front of the programmer but not the pain doc (who caused me all that pain! lol). So far, still doing ok. My left leg is ramping up slowly, so I'll get back on my usual meds. I had really decreased them during the trial - barely took a breakthrough or muscle relaxer the entire time.

    ( (HUGS ) )

    Cheri
  • of you guys!!!!

    I very much appreciate your info. I can't believe what a big difference this thing has made, I turn the SCS off for bathing or whatever & it doesn't take long for my left leg to remind me how it really is.

    Cheri, I am happy for you that the doc will try and get you in sooner. Best of luck to you. I'm going to cry too :<

    C, you can work out? I thought I'd have to majorly give that up. Just a week and my back is not happy without exercise! so that's exciting that evevtually that will be possible I know not right away.

    So thanks again
    have a great day :H
  • Of course I had to wait 8 weeks to insure the leads were scarred in real good, and by then I had not worked out in so long ... it was rough! I have had to modify some of my stretching, so as not to tug on my extension wires, and there's a few weight machines I can't use, since it puts too much pressure on my generator. Other than that, I have been able to get back into a decent routine. I work out 3 to 5 times a week and walk my dog every day, at least 1.5 miles in the am and in the pm. I am finally starting to see some decent results! The one cardio machine I found I have to really avoid, is the elliptical trainer. I yanked all the slack out of my extension wires trying to use that again. So I alternate during the week between the stationary bike and treadmill.

    Until I reached the 8 week post op point, I did a lot of walking and nothing else.

    Best of luck!

    "C"
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