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I'm back!!!!!!!!! from Kathy Yarbrough on SCS

Sorry I've been out of touch for awhile. My back is better and I have been cutting back on meds but then just before Christmas I took a really hard fall. Tripped and fell forward stepping up on a curb. Caught the brunt of the fall on my left knee and right hand. Knee still looks bad after 3 months but it isn't broken. But around that time I noticed that my stim wasn't being very helpful. So I had Medtronics take a look and run some parameters and there ya go........it is completely out of whack. Within 2 days after their findings, the nurse of my "top doc" at Emory called and I am scheduled for surgery April 8th.

On top of THAT, I've had a virus for the last few days and felt yucky and THEN this morning I stooped down to pick up a box, turned the wrong way, heard a large POP from my right ankle and now I can't walk. What is it they say???? When it rains, it pours. I'm in the middle of a monsoon.

So my reason for posting this is to share my experience with other SCS folk. Yes, these things can break but there are usually just a few electrodes that go out instead of nearly the entire unit. I suppose this will give me an opportunity to do some more fine tuning on stimulation. I have a few theories on how mine could have been better placed in the OR. I'll once again be posting on my recovery. I will also be happy to answer any questions. Kathy


  • but wish the conditions were better. EVERYONE>>>>>> THIS IS THE KATHY that I say over and over, please read Kathy's post for about a year ago. Kathy, mine was neck. I wish I had the BS like Mel did. I did not get the Lami and really feel I got jipped. My PM only works with Medtronics so I had to settle for what's good for him had to be good for me. Mel is doing great! She had the BS, Lami, cervical. Well try not to hurt yourself much more. Your moving and bending much better than before!
  • You are too kind. I feel guilty that I took a leave of absence from posting - never thought that anything I was sharing really helped (?)

    So, regardless of your political leanings..............please?? I was forced to move to a new insurance carrier. My rate was reduced to a mere $800 a month over the $2k I was paying. Now my medronics unit isn't working but I have to PROVE it to my new carrier for this surgery so I am making a trip down to Emory tomorrow to gather substantiating documentation Oh well....we all have to "dance the dance" don't we???? Terri, I remember you/ Mel. Great to catch up. I feel really guilty not to have been more active postiing EXCEPT to say that I am also a business owner, work 50 hours a week, have 6 grandchildren and don't have a minute to my own. And just turned 62!!! Anyone else running into insurance issues??? This will begin my second line of postings for anyone who either had spinal cord stimulation OR needs to have a revision surgery.
  • kathyykkathyy Posts: 580
    edited 04/03/2014 - 1:31 PM
    They have been out there IN FORCE for me to push my revision surgery through. In the Atlanta area, you can't go wrong with Medtronics. The have wonderful reps and great docs.
  • with Medtronics. They talk a great game but....Post op the first thing the rep said was "you know you will always have some pain" I posted here under "My Rep just dropped me" What they inferred and implied before surgery was very different than what happened. AND, NO ONE CARES! I needed the lami and for cervical Boston Sci is the best. They only go to C-2, 1-lami they do wake you up (Medtronics lied about that) There paddle is MUCH smaller and the accurateness for coverage in the cervical region is superior. So, hear I am hoping I'll be able to work full time. Im on more meds.....not happy BUT the PT is working great. BUT your LUMBAR and you can split that down the middle with BS or Medtronic. It's great to hear from you again you sound great, thats whats important.
  • I've had my Medtronic's unit since December 24th - so about 3 1/2 months - and I'm having issues. I'm seeing my doc on Monday to see if my leads have moved, but I'm having issues with connectivity and coverage. I have the adaptive stim, and I'm noticing that my unit goes from the "Upright" setting to the "Laying A" setting (flat on my back) with the slightest movement. If we're in the car and my husband accelerates - thereby slightly pushing my body back into the seat - it goes to my "Laying A" setting, and I have to lean way forward to get it to go back to "Upright." If I'm sitting on the couch and lean back slightly or shift my weight to my hip, it goes into "Laying A" setting, and again, I have to lean way forward to get back to "Upright." If I'm laying in bed on my back and switch to my left side (where the setting is much stronger) - it fails to make the change and I have to sit upright again and then lay down VERY carefully to keep the setting.

    Also, my coverage has been inconsistent at best for the past couple of months. I have two very patient reps, and when we find a good setting during a programming session, about 3-4 days later, the coverage has changed . . . if it was good coverage in my lower back at the time of programming, 3-4 days later there is no lower back coverage, and suddenly my upper thighs are getting coverage they weren't getting a few days earlier. Or, if the setting felt fine everywhere during my session, a few days later it seems to have moved and is uncomfortable under my ribs, or I'm getting a sharp pain way up high between my shoulder blades.

    Does that sound like faulty equipment? Lead migration? I just don't know what to think. What I do know is that for the first month after I got my stim, my pain level was reduced 60-75%, but these past two months, I feel like it is only maybe 20-30% reduced. I'm discouraged! My reps have suggested that I have an X-ray to check for lead migration (I don't have the paddles), which is the reason for my appointment on Monday . . . but I was wondering if anyone here has any thoughts or might have perhaps had a similar experience.


  • I have the adaptive stim as well and I don't use that program at all. It never worked for me. I have about 5 programs set up. Now here's the thing that perhaps you weren't aware of.... from my experience, the longer I had it in, the better it worked because it stopped floating around and became scarred into place. Have you completely learned how to adjust it? Not just low to high but also how wide the coverage area and how the modulation actually feels? Definitely have the thing xrayed...if nothing else it will give you some peace of mind.
  • Thanks for your input, Kathy - I appreciate it!

    I do have a question, though. You said you don't use the adaptive stim, but isn't it annoying to constantly have to change your settings? My setting for laying on my back is not as strong as when I lay on my left side, so if I don't use adaptive stim, doesn't that mean that during the night I would have to keep changing it whenever I changed from one position to another?

    I do see a benefit of not using the adaptive stim, though, as I am not able to adjust the width of the pulse in adaptive mode, and I think that might be a good thing to try.

    Looking forward to getting some answers on Monday,

  • Thats what happens to be, the coverage doesnt hold. Im great when Im there with rep...3days latter the stim is in my ankles from my shoulders. Rep told me stay in same spot for 3 mins and press sync and you've adjusted your adaptive stim. Try it. So glad they are spending time with you.

  • Kathy good to see your still around
  • After 3 or so weeks, my new insurance company, (thank you Obamacare) finally concluded that I actually DID need to have my spinal cord stimulator fixed so it works again. Scheduled for surgery this upcoming Friday at Emory. Hate going through this again but .......... gotta.
  • Sorry you have to go thru it again also...but hey you wrote "the go to book" on this experience. Be careful of the meat loaf this time.
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