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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 04-08-2012, 11:11 AM   #1
Join Date: Apr 2012
Location: Vancouver, BC, Canada
Posts: 4
alicethecamel HB User
For Featherme & anyone else who has questions about SCS

Hi all,

I got my SCS in September 2009. If you want to ask any questions, please do. I absolutely love it. I still take meds, yes, but not the same ones, and not as strong. Any doctor who claims you'll be med-free afterward is in dream-land because a 50% pain reduction is about the best a SCS can do, but 50% is huge!


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Old 04-09-2012, 03:25 AM   #2
Join Date: Apr 2012
Location: TX
Posts: 4
NRomanov HB User
Re: For Featherme & anyone else who has questions about SCS

May I ask how old you are & how long you'd been battling symptoms? I don't mean to pry. I was 1st courted an SCS/SNS ~5 years ago @ 22. I just turned 28 & I'm left to decide between 1 Dr who's seen me for all 6-7 years of it saying "it's time" & the surgeon who did my 1st microdisc @ 23 saying "we all know it's getting worse not better, we always have; what options are we leaving ourselves long term?"

What lives we're living - so unique - discussing our quality of life in terms describring prospective values vs. degree of expected pain.

Last edited by NRomanov; 04-09-2012 at 03:26 AM.

Old 04-09-2012, 10:38 AM   #3
Join Date: Apr 2012
Location: Vancouver, BC, Canada
Posts: 4
alicethecamel HB User
Re: For Featherme & anyone else who has questions about SCS

I'm 37, have had CRPS for 5+ years. When they put the SCS in me I was 35. They never spoke of it being a last option, or used any kind of 'we're at the worst case scenario' type vocabulary. The wanted me to have it because I'm young (relatively), because I'm active and because symptoms were preventing me from living life. There were hoops to go through to get it, and I'm so glad I jumped

It's not a 100% fix and that was something they were very adamant that I understand before the trial: that they consider 50% pain reduction a success.

As for 'what options are you leaving yourself long-term?' I don't know your situation, but you are young, would be able to manage a SCS (it requires charging every couple days: I do it while on computer/watching tv/sometimes on transit), and I can tell you that the combination of SCS & meds (less strong than before) is much more effective than pain management w/o the SCS.

It's a tricky operation and the actual surgery is painful, in an icky way. You have to direct the surgeon while s/he moves the leads around to different nerves in your spine: you tell him/her where is is helping the pain, where it is not. For example, sometimes a nerve will affect your pelvis (makes for OR humour . Fortunately for me, they were not able to narrow the stimulation to my right foot/ankle and I wound up with stimulation from my toes to my navel. As I have lower back pain and my CRPS has spread considerably, this has worked tremendously in my favour. After a long day I turn it up and the relief to my legs and back is better than any massage I had pre-CRPS. So, be flexible: things may help in the long run.

The recovery is 6-8 weeks (from the actual implant, the trial recovery is a couple days and caution around incision site). During the 6-8 wks you must lay horizontally as much as possible: make a list of all the films you want to stream & set yourself up on the couch as your new bedroom. You are not allowed to reach: can't wash your hair (not efficiently), can't get high things from cupboard, so make sure is someone has more than you think you'll need set out. You aren't allowed to lift anything that weighs more than 5 lbs (during recovery), 20 lbs for a period afterward.

The pain is significant, but as CRPS kids, it's nothing we can't handle and being forced to take it easy is a welcome instruction/obligation. I didn't need to take extra medication to medicate surgical pain. I just needed to be cautious about how I lay down: incision and battery sites will be painful.

I am fairly skinny, so they put my battery in my rear hip so it wouldn't stick out too much. It's about hockey puck-sized and sits just below low-waisted jeans. The right bikini covers it (and I don't have to wear a 50s-kini to do it). I sleep on my back or on the side w/battery and it's fine. Most people have the battery in front, above the hipbone. Consider where would be most comfortable for you.

The only issue w/having it in back is charging: it's a bother to keep the charger in the right spot. They issue you a charging belt (never worked for me) and stick-ons that connect the charger to your body. I usually stick the charger between my jeans and undies (a barrier between charger and skin is desired, though I'll admit I often put it directly on the skin). I charge for 2 hours as often as I can: I try to do it every night and while I am getting ready in the morning. That sounds like a lot, but it's effortless and keeps you topped up. A full SCS battery is like a full tank of gas: you feel like you can go anywhere.

I hope this helps. Please feel free to ask more questions if you like.

Also, my having a SCS doesn't mean I am not not treated for CRPS. I see my specialist hen I need to s symptoms change/develop and still receive treatment when needed: I've had a massive spread in the last few months (from nothing in 5 years) and started receiving lidocaine infusions this week. There is no sentiment that, 'If we give you this expensive machine, you should be grateful and not bother us with more complaints'. A SCS is part of the pain management system, as is ongoing medical treatment.


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NRomanov (04-09-2012)
Old 04-09-2012, 05:49 PM   #4
Join Date: Apr 2012
Location: TX
Posts: 4
NRomanov HB User
Re: For Featherme & anyone else who has questions about SCS

I had the trial done 6-7 months ago when we 1st discussed it with serious possibility. I did get good relief from it.(after it came down a bit from my rib cage. They kept saying it was because I'm so tiny, Idk but my ribs felt like they were in a vice the 1st 48hrs. Ugh!)

The reason we forewent the implant then was bc after the trial was removed, the nerves seemingly "reset" - is how I've described it. As quickly as it came on, it went away.

I have DDD with herniations from L2/3 on down to L5/S1. They herniate to the left, right and center. The pain & initial symptoms started @ ~20 y/o. @ 21 I let a D.O. I worked for pop my back & when he couldn't get me/my back to essentially 'loosen up' enough to do anything consequential to my spine he sent me for MRI. It was only my L3/4-5/S1 herniated back then. The 4 Dr's in the office played a 'fun' game where my Dr hung my films & called the other 3 in to "Guess the Age of the Patient" … I was standing right there when not one of them guessed younger than "65, bc clearly this is some kind of gimmick or trick." My Dr turned to face me & said "Meet our patient. Do you believe me now, Ms. Surely It's Just A Strain?"

@ 23, 4 months before I turned 24 I had my microdisc. The resulting scar tissue has only complicated things further.

During my Sr year of a BSN, RN program I was doing our final externship clinicals & went to my pain mgmt Dr to tell him "Don't ask me HOW but I can swear I broke my tailbone. It's like pain I've never had. It's not managed with what I use for my nerve pain r/t my spine & it's worse if you touch it. Feel! It's feverish!" I'm sure you all know by now, it wasn't broken. It was RSD. & that was the beginning of my willingness to do the implant. He'd told me to consider it 5 years before. Never as a last ditch effort, just for better pain control. Sadly,I'd always reply "Dr. D, I don't need a permanentttt implant... I'm gonna get better. Just stick with me. You'll see." RSD convinced me.

I think my surgeon is concerned long-term because I have so few other options from his service. The amount of scar tissue my body produced post-procedure limits my surgical options quite a lot. He's really incredible. He calls every few months to ask if he can give my # to a new pt approximately my age who is scared of what surgery means for them. He likes to tell them, "She just graduated from a Bachelors level nursing program, call her!" LOL! I like to be a little more level-headed with them, but it's a compliment, no less.

I just don't know... & I can't even articulate why... I guess it feels like giving ... In? Up?

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