On a Facebook support group for SCS one member asked about what someone considering getting a Spinal Cord Stimulator should know or think about before making a final decision. I wanted to share my response here. There’s no particular order to these thoughts…just off the top. 🙂
I certainly don’t and won’t discount the experiences of those who have had a hard time with SCS or had theirs removed. My journey hasn’t been pretty either, but I’m SO GLAD I ENDURED and now the SCS really is changing my life and I feel that it’s helping to decrease the number of flares and my susceptibility to them.
It doesn’t help with EVERY type of nerve pain I have. Many folks with CRPS who have an SCS find it helps decrease the burning pain. For me it doesn’t, but it does help with allodynia and some thermal hypersensitivity as well as helping me stand/walk longer with less pain. Some frequencies help with different types of pain I’ve found. I change my programs several times some days to address whatever pain is most prominent at that moment.
I had my first SCS implant on December 14th last year, but we didn’t get 3 of the 4 leads in the right place. We had tried something risky – using Boston Scientific’s 8-contact leads to stim all the way from mid-abdomen to toes. I wouldn’t recommend trying that trick again! Unfortunately, those leads just aren’t long enough and I lost stim in my legs below the knees, and my right arm didn’t work at all and caused nerve root irritation. So my revision was March ’14. Recovery hasn’t been easy, but for a number of reasons my second surgery was actually easier though more invasive.
My trial went very well in some ways and horribly awful in others. I was on the table for 2.5 hours and pretty miserable. All that poking and moving leads up/down left all my nerves inflamed. My leads moved as soon as I got off the table and I couldn’t use either of the arm leads during the trial, but my legs worked GREAT and for that alone I was hopeful.
It was a long 7 months of not lifting over 5lbs, not bending or twisting or reaching or or or…and I use a wheelchair so that was even more complicated. For most people the restrictions are 2-4 months. I’d just had two SCS surgeries back to back, so that tacked on another 4 months for me. If anyone is trying to decide on getting a permanent implant, I suggest setting up the house as best as possible BEFORE surgery so that the restrictions are easier to follow. Don’t feel bad if you can’t wipe yourself; that little amount of bending is soooo painful. It will get better as you heal. It’s also better to just follow the restrictions to a T to avoid a revision if possible. Nobody wants to go through that again.
There is real risk of spread due to the surgery. I was willing to accept the risk both times because I cannot take pain meds and most medications make me sick, very sick. All other treatments, including ketamine, were not options for me due to other medical conditions. If it’s possible to try ketamine and if you’ve looked into the risks of that treatment as thoroughly as the risks of SCS therapy, it might be best to go for the less invasive option first which seems to have a much lower risk of spreading the disease.
I also think anyone looking to get an implant should really try to consider the emotional side of it. It was harder than I’d anticipated. I was fine and am fine with having a foreign object in my body that I can feel and the scars don’t bother me that much. Perhaps I should call them battle wounds? But I wasn’t prepared for the frustration of healing and the restrictions and boredom. I like to do EVERYTHING for myself.
It can be hard too, even when things go well, accepting that the SCS isn’t a cure and won’t knock out pain entirely. It just doesn’t do that. Some types of my pain are relieved by 95% (touch allodynia) and others are barely changed. Surges of stim happen with changes in posture. The higher up the leads are placed, the narrower the space between the leads and nerves in the spinal cord, so the stimulation can be rather finnicky and at times just plain annoying when it changes.
Be prepared for the surgery to HURT. Every surgery is different. My first was a monster and the second was bad, but it took more out of me the first time even though I only had one incision on the first round and no scar tissue to battle and cut out. Pillows are your friends, not just in bed, but in the car and when sitting at home and just about everywhere else.
Patience with the SCS is helpful. It can get frustrating when reprogramming is necessary every 1-2 weeks for a while. Remember that your body is going through a lot of adjustment and try not to freak out when the stimulation changes in the first month or two. If you’re concerned, always contact your rep and/or doctor. The reps are really helpful when answering my questions. My programming sessions are STILL about 2 hours long, and that’s with a now-working SCS. It’s taken time for my reps and I to learn what really works and doesn’t work with my body and SCS, but as time goes on it gets better and better. The coverage gets more even, doesn’t jab me in certain spots.
Oh, speaking of that, don’t be afraid/embarrassed to tell your rep if the stim is going to “exciting places” because they’re used to hearing that and can pretty quickly get it out of there to prevent, well, you know.
Be prepared mentally to put everything you’ve got into your time in the Operating Room. Many decisions are made during the surgery which can’t easily be un-made afterwards. I wish I’d known that the first time. If it doesn’t feel EXACTLY RIGHT, don’t let anyone tell you they will fine-tune it with reprogramming. INSIST if at all possible that you want them to do it NOW, in the O.R. That’s our one shot. It’s a lot of pressure but worth it in the long-run, even when we have to be the bullies and advocate for ourselves while in pain. If you can feel way too much, ask for more local anesthetic. You may still feel it, but keep thinking of the relief you hope to have. (You may hurt more AFTER the surgery anyways, so hey, try to hold on while in the O.R. and they’re giving you calming drugs.)
I had them put my SCS in the side that I don’t normally sleep on as often which helped because for a long time I wasn’t able to sleep on my back or left side, only my right. Some also consider which side of their body has more severe CRPS as part of their decision in the placement of the battery unit. I had mine placed in my mid-back, below my last rib, because the CRPS starts in my lower back and I didn’t want anyone cutting nerves down there. I’m also grateful now that I didn’t have to have any extensions tunneled through my back! Less is more.
Not allowing battery to drain is helpful because it takes a lot of time to charge it back up, especially if it goes into “hibernation” mode. The heat from charging plus the pressure over the implant isn’t comfortable. When you’re first able to charge your SCS after surgery, just charge it for a few minutes at a time even if a few times a day (just after your pain meds kick in, preferably) rather than going for an hour or longer. Mine takes 3 hours to charge 1/3 full. Keep up with medication doses so you’re not trying to play catch-up with your post-op pain. When I travel, I take all my SCS stuff with me. Can’t risk a flare. I do find charging kind of annoying, but if I try to do something active to take my mind off it while I’m charging, that really helps. Think of how lucky most of us newbies to SCS are in that we don’t have to plug up to some charging pad connected to a wall each night!
About the emotional aspects, again…I saw a brochure from Boston Scientific about all the things these SCS folks could do after getting their SCS’s. Playing on the beach, gardening, woodworking, working in general!, camping, you name it. And I was like, “But why do they show people doing these things? I’m sure there are a select few who can get back to doing that kind of stuff. I have a friend who is back to working on her feet all day full-time! That’s great. But I don’t think it’s the norm. I feel sad that I don’t think I’ll ever be able to do these things again despite what I’ve been through to get my SCS.” I wasn’t mislead by my doctors or reps really. They didn’t give me that dumb literature either – I saw it on a table. Yet I think it’s a good idea to hold loosely our hopes for the return of FUNCTION we expect to get out of having an SCS. Pain reduction? YES! Improvement in function in my ADL’s? Yes. But I won’t be doing most of the things (especially IADL’s) I was (I think secretly, unwilling to admit to my self-conscious) hoping to do after I got my SCS and my pain levels decreased.
Blessings to anyone out there trying to make these decisions. I know it’s hard and there’s a lot to think through.