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Newbie... SCS implant 12/3/08, painful stim/cramping, need advice!

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:26 AM in Pain Management
Hi everyone,

I've spent the past hour or so reading old posts, hoping I'd find someone else with the same issue, but I can't sit for a whole lot longer (I know y'all feel my pain!), so here goes...

I'm a newbie to the board (hi!) - I'm a 42YO woman, living in central NJ, with spina bifida occulta, multiple laminectomies, bulging disc at L1, multiple detethering attempts and a re-tethered cord, a benign tumor around the cord at L3-L4, lots of scar tissue & lots of nerve damage. The outside of my back looks like something out of Mad Max, and the inside looks like a ball of yarn after my cat's been playing with it. I am ambulatory, have never had to do the wheelchair thing, and have only been grudgingly using a cane for the past few months. I know I'm very lucky, as far as the spina bifida goes, but the whole thing really p1$$es me off. 'Nuff said.

I've had periods of chronic pain on and off since I was in my teens, usually lasting 6 months-1yr, then going away on its own. (No one was ever able to figure this out!) The most recent period of chronic pain started in August of 2004 (no specific cause, once again) and this time didn't go away. After 4.5 years of pain and a life that was reduced to the bare minimum (get up, go to work, come home, lie down), and being zonked to the gills all the time on pain meds, I was DONE. I found a really well-recommended pain doc, did the SCS trial, passed the psych eval, got insurance approval, and had the actual implant done 2 weeks ago yesterday, on 12/3/08. The surgery went well but the doctor did tell me they had a great deal of difficulty positioning 1 of the 2 leads. I have an ANS EON Mini, Model 3788. I'm still sore from the surgery, but that was a walk in the park compared to the pain I'd been dealing with on a daily basis before the surgery.

So far so good... but here's the part I'm worried about.

I've already had 1 post-surgical programming session (at 1 week post-op, when they removed the stitches), and I'm getting a lot of stim up around my sides, even when it's only supposed to be programmed in my lower legs and feet. I'm also getting horrible cramping in my calves and feet if I leave the stim on too long, no matter what level it's on. I can't turn it up because the waist/side stim becomes painful. And when the stim is OFF, I still feel like it's ON around my waist and up the sides of my torso. I'm also getting a lot of twitching/jumping of muscles in my lower back, below the insertion point for the leads but above the battery pack.

I'm more than a little freaked out by the "feels like it's on even when it's off" thing, and I'm relying MUCH more on my rapidly dwindling leftover pre-surg pain med supply than the SCS for pain relief. I can't leave the stim on for more than 3 or 4 hours without excruciating calf/foot cramping, and I certainly can't sleep with it on. After all this pain, stress, worry, and time spent beating the insurance company like a rented mule to get the approval for the surgery, I'm finding this very disheartening and a little frightening.

Is any of this normal? Has anyone experienced anything like this? Is it possible that there's something that's still "on" even if the patient programmer says it's "off"? Is the weird side stim sensation dangerous? Are there any definitive warning signs for a stim implant that's not quite right?!?

It's been getting worse over the past 2 days. I'm concerned enough that I'm going to call my doc's office tomorrow a.m. and see if I can get in to see the doctor soon, but their office hours are very limited in the once office that's close enough for me to manage to drive myself to. (I live alone, and the cat doesn't drive... yet.) I'm hoping to get an appointment for next Tuesday, which is the next time they have office hours.

I don't want to come across as some overly panicked wuss... but the thought that something might be wrong is very much on my mind. I'm trying to allow for the healing process, and I know that the leads aren't scarred in place yet, but this just doesn't seem right.

So if anyone has any wisdom, comments, reassurances, etc. - it'd be very welcome. Anyone? Bueller?

Thanks,
MsCatmattress

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Comments

  • Contact your company rep or doc right away. You may have had a lead migrate on you.

    Welcome to Spine Health.

    "C"
  • :) hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. i too have had pain since i was a teenager. :''( that resulted in a double laminectomy as well. i am sorry you are having such problems with your stimulator. ~X( you should call your doctor or your rep about this as soon as possible. :-C from what i understand this is not normal. good luck as you seek pain relief. Jenny :)
  • It's always the best idea to touch base with your rep and/or doctor when weird stuff is happening.

    With that said, keep in mind that you're only 2 weeks post-op, so you still have inflammation and swelling from the implant procedure, which is probably just compressing/invading some areas that aren't "normal" for you.

    During my trial, I had the "it's on but it's off" sensation and it freaked me out too, but an MRI (after the trial leads were pulled) showed it was the result of my spinal cord swelling from the irritation of the trial leads. It took about 3-4 days, but once the swelling went down, that sensation went away.

    The swelling also has a huge impact on the programming and getting the stimulation where you need it. I have a paddle lead, implanted through an open laminotomy, and I had a discectomy at the same time.. I figured as long as he was in the neighborhood.. :))(

    I had a LOT of swelling around my lead in the beginning, I couldn't get anything right. At my 2-week follow-up, I met with my rep and he couldn't hit my hips/butt at all. He could get my thighs, knees, calves, and ankles, but he couldn't get my feet without turning the amplitude up and when he did that, it also spread north so I was getting twice as much boob stimulation as foot stimulation. :))(

    When I met with my rep at my 8-week follow-up, it took about 20 minutes for him to create what I consider to be my perfect programs, and I haven't had to meet with him since.

    Hang in there, it'll get easier!
  • Thanks so much, everyone, for the fast responses!

    Note taken about the post-op swelling! I expect that is probably a big part of the problem. (I'm also getting the same kind of fleeting dizzy feeling on position change that I've had after the epidural shots, and after the trial, which the doc said was due to swelling. Makes sense.) There is a remarkable lack of communication from the medical providers about what to expect, during and after the surgery. They do this all the time, but it's all new to me... I'm the patient, need the info!

    I noticed differences also, BionicWoman, about the differences in the programming immediately post-surgery and 1 week after. I'm planning on taking it VERY easy this weekend, and hope that helps reduce swelling by my appointment on Tuesday. My rep seems to know what he's doing, and between him and my doc, I'm hoping to figure this all out. And hey, a bonus - my rep is eye candy too! ;)

    Last night I just turned the stim off completely, and tried to sleep. Riiiight. At 5 a.m. I finally took the med "cocktail" that seems to really help - Percocet with Xanax - and got about 4 hours' sleep, so I'm not totally fried. Now I'm just trying to keep calm and keep being hopeful, and not worry too much until I can talk to the rep and the doc.

    I will be sure to ask them about lead migration, also - thank you, C, for the mention!

    Be well, everyone - any additional comments always welcome!
    MsCatmattress
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