Hi there,

I am completely new to this forum so really dont know what to expect. Basically I have suffered with CRPS in right hand/arm for 6 years after an operation in connection with RSI. After many years of being told there's no further treatment etc etc I went to a Pain Clinic who offered me a possible SCS. I would really appreciate anyone's input into this as I am a bit anxious and apprehensive about further surgery.

Tell you what guy, first and foremost, and thank you for venturing to seek us out, then post your question. While I do not know of any on the forum who have had the implant to address arm injury to the nervous system, this wonder of wonders has been a blessing for me regarding my lower trunk and leg nervous system injuries.

I count myself privileged and blessed to have the benefit of the device, and one of the most important steps you will note in your path of consideration is the Trial surgery where leads only would be implanted near your spinal cord at the appropriate T or C level of your spine to establish first and foremost whether you could receive benefit through such an implant on any basis at all, let alone a fully blown permanent implant which is a major surgery.

So, consider us ALL resources regarding the possibilities you consider, and ask away!!! Any question is a GOOD question- a big reason why we are assembled in this extended family of hurting people seeking answers, solutions, and results. As for myself, I gladly share that among the users I know, I seem anomalous, in that I was ultimately able to completely wean off of pain management medication due to the use of my stim and my trusty cushion. Perhaps you could find a similar solution for your arm.

Prayin for ya,
Mark56

P.S. Normally one such as you will be deluged with responses from our members. If the responses flow thusly from our group of caring folks, take it as a wow benefit of being virtually hugged into a large group of those who care. Yep.

You are very welcome to our forum and I hope we can at least offer you some support. We are a very genuinely caring gruop of people on here.
Personally I don't have CRPS but I believe it's a horriblr condition to have.
As Mark mentioned the SCS has practically saved my life, I have suffered from chronic back and sciatica in my legs for many years and the difference it has made is truly remarkable.
I too suggest going through the trial and with the help of you Doctor and family decide whether to have it permamently.

The very best of luck and if you've any further questions that I might be able answer please feel free to ask.

All the very best,

Sophie

When I got my stimulator... My rsd was only in my right arm and it was after an operation.... I really like mine. It doesnt take ALL the pain away but it takes it away enough because thats where my rsd is worst. (within the last few years my rsd spread to my other arm and legs) I have mine on all the time. I would DEFINATELY go for it. Find an AMAZING surgeon, and ask for references of people in his office that you can talk to about the surgery with him etc. For me, after the surgery for literally 3 months I laid low. Alot of people do more than me, but I DID not want those leads to move and I am very very thankful because I have had no problems with it and it has been about 3 years actually May was 3 years that I have had Abby (my stim us with stims tend to name them LOL) in me. When I had mine, my doctor had me talk to 3 of his patients 1 who didnt like it, and 2 who did to see their experiences. It really helped because you got an insight to that doctor as a surgeon and how he takes care of their patients. The stim is NOT a cure and will NOT take 100% of the pain away... But I have RSD and it makes all the difference in the world. If i have it off I have a hard time sleeping, but with it on it take enough pain away for me to be able to handle. Its definately a great route because it is medication free and with you all the time. The surgery is rough to go through, but the outcome I have had is so great that it was worth all of it. If you have any questions feel free to ask... I know I am kinda all over the board with what I wrote, I kinda wanted to give a little bit of everything. OH, and one thing that made a HUGE difference... before your suregry go to joanns or something and find a soft type of material to cover your neck brace with. It will make all the difference in the worrrrld! The neckbrace is so uncomfortable, but with the soft material it doesnt rub your skin sore or anything!!! Hope I answered a few of your questions! Oh and also, when you have the final surgery, put a pair of pants on and make the incision where the waistband of your underwear and pants dont hit, but you can put them on and hide the incision incase you go to the beach

At this point I'm extremely ambivalent about my SCS. It (or rather, they -- I've been through a few) definitely made a huge difference for me when I needed it, but not without regrets.

On the one hand, I probably never would have managed the pain well enough to get my RSD into remission (over 5 years now!) without SCS assistance. (This counts for like 3 or 4 plusses in favor.) On the other hand, this assistance involved 3 SCS's and 8 (IIRC) surgeries, because the damn things kept breaking.

On the one hand, the sensation of using it was downright pleasant (I like to describe it as my legs feeling like they're purring like a cat). On the other hand, the 6-8 week don't-you-dare-move-your-back recovery for each surgery sucked.

On the one hand, being able to adjust the stimulation (i.e., pain relief) as needed was great, since my doctors refused to prescribe anything taken as needed for pain. On the other hand, when the leads slipped out of place, the stimulation would change location and sensation, and could actually be painful enough to make the remaining relief worth it.

On the one hand, I haven't used my most recent SCS in half a decade and it doesn't interfere with daily life. On the other hand, the scarring on my back and butt, and the big chunk of metal in my buttcheek, are downright grotesque.

I guess I would recommend it if you've exhausted other options, with a few caveats.

1. Don't go with an internally-powered SCS unless it can be charged transdermally. My docs claimed the battery in the first one would last 3 years. Of course, they're never wrong, so they made sure I knew it was my fault for burning out the battery in under 6 months. Don't let this happen to you.

2. Be aware that having an SCS implanted will place permanent constraints on your life, even if you make a full recovery. While suffering excruciating pain this won't be a concern, but if it helps a lot and/or the pain subsides, you might want to do something fun, only to discover that it is absolutely contraindicated if you've had an SCS implanted (e.g., no SCUBA). It's a really rude surprise to first discover this just as fun is starting to become relevant again. Inform yourself first, save yourself the stress of shattered false hopes later.

3. Consult all your options first in regard to what model of SCS. If it's a take it or leave it on one model or manufacturer, run.

4. Try to think of any questions or concerns you might possibly maybe have about it (now or in the future), no matter how silly, and find out the answers before you make the leap. You're seem to be off to a good start on this.

Good luck, whatever your decision!

Take a written list in to grill your doc on the process, the products, the recovery, the dos and don'ts, the risks, the ratios of success and exactly HOW one designs the word success, the limitations post surgery and post recovery. Ask to speak with actual patients with success and failure stories [I realize that can happen here, but talking to someone in person is good as well----- I DID]. Take nothing for granted. Ask the surgeon you interview regarding their training for the procedure, the manner of your involvement [I actually programmed my unit myself], their accreditation, and their foundation for agreeing you are an appropriate candidate to have such procedures [remember, it is a two step process, trial surgery, followed by permanent implant surgery].

Think, pray, seek counsel, then the decision ultimately comes down to you. For me, I was sold after having had the benefit of a one week long trial. My product has lasted now for a year and runs 24/7. I am conditioned into a proper and effective transdermal recharging regimen. I have been able to wean off of all, and I do mean ALL pain management meds. The battery has not failed on me yet, although I understand NO human created device lasts forever [not even the fairly long life of a decomissioned nuclear reactor]. Some have had regrets..... I have not. I have traded 24/7 agony which was driving me insane for an ability to live with the limitations presented by being a post-op implant survivor. Oh, and I am back to riding my mountain bike! Will I ever do those downhill ski runs I used to take with my family, probably not, but then there are some tradeoffs.

Thinking positive,
Mark56