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6.5 Week SCS Update

cherish22ccherish22 Posts: 706
edited 06/11/2012 - 7:28 AM in Pain Management
Wow Wow Wow!! Yesterday, I got up and the "old" nerve pain came back. I started to panic and then I remembered I hadn't switched over from my "sleep" program to my "day" program. Within 30 minutes, pain almost entirely gone.

I cooked, cleaned, vacuumed (!!), bathrooms, dusted, pool maintenance, dogs, and even went to Sams with hubby last night.

Today? My calves are sore! And I'm pooped out, but so happy!! I just need to get my muscles conditioned and I'm good to go. And I slept GOOD last night. lol

Since the SCS permanent placement on Jan. 5th, I have taken it easy waiting for the leads to scar down. That should have happened by now, so I'm doing more and more. I would say pain keeps me from sleeping - one night since then. And we were on a 9 day trip with a 9 hour car ride and I had overdone it a bit. So, I rarely take Ambien anymore, rarely take breakthrough meds, and rarely take muscle relaxers.

I am still on my LA meds with no plans to decrease any time soon. I want to get really stabilized, get back in shape, because since I've been doing more, I have had back pain which I rarely had before. But this back pain is from doing "too much", as right now, anything is almost too much for my sad, pitiful muscles. All I do is take it easy and I'm back to normal in a day or so. Not debilitating or life-altering at all.

On that 9 day trip, however, I did take breakthroughs and muscle relaxers because I was shopping, walking, traveling, you name it - and my muscles got sore. I've lived in a chair 23 hours a day for the last 2+ years and my muscles need to get back in shape.

Anyway, I honestly couldn't be happier and I hope it works for so many more people. I am sad when I read it doesn't. I personally love the buzzing feeling myself, and since I have sensory issues, I was worried about that.

It's awesome to know that when I feel nerve pain, I get my remote control and turn myself up, or change programs, or whatever and then zip zap, nerve pain dissipates. And if I turn the SCS off? I can feel all the old nerve pain I want - which I do not want to!!

Power over my pain. Now I know why the website used that name (I have the ANS brand.) I would say the SCS works great on radiating nerve pain in your leg - for me, S1 nerve damage. I get no relief when I have back pain, and I have 2 leads (which is supposed to help cover the back.) Just being honest as I promised to do weeks ago. I can handle the back pain/soreness, though - no way I could handle the nerve pain. The key? PLACEMENT!! It is so important the placement and programming. I have gone in 4 times for reprogramming and tweak it just right and I won't hesitate to go in more if I need it.

Good luck to all!!



  • I'm glad to hear that your SCS is working so well for you. Just be careful and don't do too much BLT for a tad bit longer. Ease into it. It would really be a shame to tear your leads loose after being so patient for 6.5 weeks. My doc had told me 6 weeks and my rep told me 8 weeks. So I went ahead and did the 8 weeks, just because I didn't want to take any chances.

    Glad you are doing well. Ease into the daily activities.

  • That sounds good for you! I have my fingers crossed I will be one it works for! Time will tell! I'm glad to hear all is well. =D>
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  • Yep, I'm doing next to nothing today. Cleaning bathrooms not bending over is quite the sight, lol. Ever used a gripper with a wet rag on the end to clean the floor? lol

    I use the gripper to do laundry, get pans out of lower shelves. I LOVE my gripper, and have 3 of them around the house because I still don't bend over. Heck, I used the gripper outside dealing with the pool pump. I just couldn't believe I could stand that long!! The only questionable activity yesterday was the vacuuming, but we have mostly wood floors, so I didn't have much resistance and I did not vacuum the bedrooms. But 3 months ago? This body was in a chair, fully reclined and could barely get showered every day, let alone anything else.

    I promise I'll be good. I would NOT be a happy camper if I pulled the leads out. No, that would not be good.

    Also, interestingly, a week after final placement, I got 2 new programs that suddenly the other day weren't working at all. Those 2 programs caused nausea if I turned them up as high as I wanted, so I kept them turned down low. When those quit working (to my perception), I went back down to programs 4 and 5 (the ones that weren't working 5 weeks ago) and they feel great!! LOVE it! And NO nausea. I can turn myself up as strong as I need to without feeling queasy.

    As you have said many times, stress, illness, trips, you name it, changes our program needs so it is most helpful to have more than 1 or 2.

    Kicking myself though - when I had the trial, my programmer explained in detail how to set my own programs, etc. Stupidly, we did not write any of that down, thinking we would get that info again. Nope. A different doctor did my permanent placement, and he doesn't allow her to tell the patients how to program and tweak. So we are so mad at ourselves!! We'll just have to watch over her shoulder when we tweak again and see if we can remember. I can understand why some patients should not have that info, but others like you and I? Definitely. You are so lucky you have such full capability to tweak yours!

  • I am so happy to hear that you have had such a wonderful outcome to your SCS. I go in next Tuesday to start my trial. I am excited, nervous, scared, happy, so many emotions all rolled into one. I hope I have as much luck with mine as you have had with yours.
    Congrats to you!!!!!!!!!!!!!! B)
  • Glad to hear all is going good for you. It just gets better. I am 2.5 years with mine, just had my battery replaced to be the rechargeable. Told my PM and my medtronic rep when they told me I would need to have my battery replaced, "Go ahead because I'm not giving this thing up." You will be amazed at how much more you can do every day. Good luck to you and to frutrated.
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  • BotzBotz Central FloridaPosts: 223
    I am set to meet with the ANS rep for the initial training/pysc eval this coming Tuesday. I have been out of work for the last month. Couldn't get thru a 9hr day sitting @ a computer. Have been chained to the couch and recliner. Anyway your results are outstanding. I hope I have half the relief you have. Thanks so much for sharing.

  • Glad to hear the scs is working for you. My daughter couldn't function without hers. With that being said, she is on her 3rd scs. The 1st one the batteries that were supposed to last 6 yrs faild in 2yrs. I think she had it cranked up on high all the time. The 2nd one which has a recharable battery pack ( I used to tease her about backing up to the wall & plugging in for the night while she stood there & slept)the leads came undone & metronics warrentied it, but it ment another day surgery to get it replaced. The 3rd one has been in a yr next month & so far no problems with it & shes learned to be more conservtive with the settings. It has pretty much weened her off of the pain meds except for a little help from the over the counter meds.
  • I have the ANS Eon Mini, which is not only rechargeable, but I can walk around and charge! Not plugged into a wall at all. My charger stays plugged in when not in use, but when I charge (usually 3 times a week because I use a lot of power on the SCS), I put on a belt, attach the charger, and I'm good to go for a walk if I want. Very easy to deal with. I've charged and cleaned up dog poo in the yard, even. lol And charging never takes longer than 2 to 2.5 hours.

    And I'm also excited that the implanted pulse generator is so tiny - just slightly larger than a silver dollar. That's tiny!

    Frustrated and Art, good luck with your training/psych eval and trial!!! Make sure to take notes of anything the programmer tells you in case they ever can't tell you again. (Happened to me because I had 2 different doctors between the trial and the permanent - same programmer, though.)

    I totally understand about being limited with sitting. I had to stay reclined 23 hours a day. I got out of that chair to shower and go to the bathroom. Rarely any other reason due to pain.

    Now? I'm driving myself crazy staying in the chair more than I want. I just keep wanting to get up and do things now that I can.

    Both of you keep us posted how it goes!


  • BotzBotz Central FloridaPosts: 223
    I really can't wait to give this a try. I have been dealing with this pain for over 2 years. I can't stand the meds. I struggled to work everyday. I sat at a computer 9 hrs a day and finally had to stop working a month ago. I would come home and crawl onto the couch and be done for the day. Fortunetly can take a short term medical leave. I have no life at all right now. I guess time will tell how much of it I get back.

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