Do you have a remote control that resets it or changes the programs ?

Hi Finz. The SCS is not exactly like a TENS. A TENS works by stimulating or contracting the muscles and tissue but the SCS is implanted under the skin and works on stimulating the nerves, not the tissue and muscles. Once the permanent is implanted, you will have several programs programmed just for you. I have 5-7 programs on each SCS, lower frequency, different sensations, etc. Each program will allow you to turn it up or down, depending on your needs on any given day. I had both of mine implanted two years ago. I need a second revision on one of them, but if I had to do it all over again I would. These things saved me! There are horror stories, I know that, but there are plenty of success stories on here too!

I am concerned that your are using ice. Are you using it on RSD/CRPS areas? It is known that ice is bad for RSD/CRPS and can accelerate it and cause spread.

Nanc

Yep everything Nanc said is correct. My thoracic stim has 9 programs and my cervical has 8. I know there are a lot of negative feelings about them. I love mine. My life wouldn't be half as good without them.

Right now I'm exhibiting almost every symptom of ms, but not able to have MRIs. So, they are doing myelograms on Wednesday and withdrawing spinal fluid. I hope hope hope it's just an rsd flare but I have been getting awful spasms. I also have been having awful bladder issues. I know these are also symptoms of systemic rsd. My drs. can't make up their minds.

Until my seizure in April, I was walking unassisted except a cane for balance long distance. (3-5 miles) anyway, I hope these more positive stories will help. The cervical has helped my hand strength so much. Without it, I couldnt push myself in the wheelchair.

They are not perfect, and o not provide 100% relief, but they are a great tool in managing my pain.

Hope this helps you!!

TK

I have had a SCS for about 3 years now. I have had no issues since the implant. The testing for the SCS is pretty much as people say - atleast for me. I was sore but the sensitivity, burning pain was gone. I had the test implant for 5 days. No showering which sucked. I had my husband help me with my hair. I have RSD in my arms so my leads are very high - by my neck so I'm set very low because of the movement in the neck, etc. I started out with it at .65 - yes that's point 65. I'm now about to a .90 since my pain has increased.

I definitely encourage you to do the trial. If your sensitivity, etc is better, I would seriously encourage you to consider it. It's not a total solution to RSD though. If you're looking for that, you won't find it with the stimulator or with meds. There isn't a total solution to chronic pain. But, for me it has changed my life for the better. Good luck.

Hello AZ-Di,

I just read in another thread that you have already finished your trial.. wow that was quick; didn't you just get it on the 8th? How did it work out for you?

Wanted to let you know that I just got my permanent implant (Medtronic Adaptive Stim) on the same day you started your trial. I am extremely happy with it so far! On day 2 - I went out on two therapy walks, both were just barely under a mile long. Day three the first outing was 1 mile and the second was just over 2 miles with a smile from ear to ear.. I am one happy girl! I noticed that after my first day of walking this really improved the surgical pain I was feeling from the implant, both in spine and where the battery sits in my buttock.. thankfully. The permanent offers many more settings for both the intensity of the stim and the pulse sensation which makes it easier to find a program that works for different activities. The recovery so far has not been bad at all - Yes, it is painful but surgical pain not CRPS pain and so much more tolerable. I have been able to sleep laying on both sides and on my back without any more pain than the initial discomfort of trying to get situated with and injury. Though I was awake for the surgery itself, I have no recollection of it.

One tip for anyone contemplating SCS that has a small frame please take the time to discuss and really think about where the battery (IPG) will be placed. I am 5'6" at 116# so I was concerned that it may protrude. Before CRPS II, I was an avid snow skier, mountain climber etc., and often wore a backpack to carry extra gear, tools etc., Because I am trying to stay positive despite this horrid disease, in my mind the point of the SCS is so that I can enjoy at least some of those activities again someday, even if at a slower pace or easier route. So.. when I arrived for surgery I had my favorite backpack in hand so that my surgeon could make sure that where he placed the battery (IPG) that my backpack would not rub on it if it protruded even a little. He laughed and said "this was a first - keep that attitude and CRPS won't beat you". He encouraged me to stay positive and do my best to find ways to enjoy the activities I love. I am super glad I took the time to think and plan for my future (thanks to the many folks who posted experiences on this forum) because it does appear that even when the swelling goes down most of my components will protrude some.

Regarding spread - I have not experienced spread from the SCS implant. My previous experience with spread after surgery was that it was obvious within 12-24 hours that it had spread. This may be different for everyone but, at least for me, given I am entering day 4 without signs of spread, I am hopeful and positive that this did not occur with this surgery. YIPPEE YAHOO.

Wishing you a speedy recovery and clarity with your decisions going forward,
Tessa

Thanks for advice!
Yes, my trial was pretty quick I guess, It was placed on Monday a.m. and removed Thursday at 4 p.m. I had 3 days of intense physical therapy during that time and since I had the SCS my doctor told the therapist to "go for it and not hold back" and boy did they ever torture me
My back was very sore during that time but my neck area where the electrodes ended up was not. In fact my back is still sore.

Wow! I'm glad all is going well with the permanent for you! Maybe the battery will settle in and not protrude. Are you having any swelling there?
Is it easy to control the stimulation or do you keep it pretty steady?
How restricted are your movements while that heals?

I'll be interested in your recovery and experiences!
Thanks, Di

Hey AZ-Di,

Your welcome!
Yes, things are still doing very well now 5 post implant - it is buzzing along doing everything it was meant to do. It is very easy to control the stimulation and adjust it as needed. I do tend to change the programming depending on what I am doing and where my pain is worst at any given time. I don't want over stimulation so I really worked with my surgeon and the rep to make it as precise as possible. The amount of programs and voltage settings it much greater with the permanent as compared to the trial stim.

Yes, I too hope the battery settles in and doesn't protrude but I will work around that if it does not - I was forewarned and went ahead knowing that it could pose an annoyance.
Yes, I do have swelling (seroma formation) at the battery site, at the leads and along the wires and oddly at the base of my spine. The doctors did have me come in for some blood tests yesterday due to the amount of fluid buildup but, all is clear thankfully. For now they are watching it closely and keeping compression wrap on it. I would cry if it had to be removed so, I am praying it is resolves without issue.

I am restricted from lifting over 5#'s, reaching above shoulder height, bending & twisting. But, I can walk as much as I am able, so that is how I am staying sane right now My dogs sure love it!!

I'll try to keep you updated as things continue to heal - if you have any questions at all please don't hesitate to ask. Glad the trial worked well for you and that you were able to do therapy while taking advantage of this amazing technology!!

May today bring you joy,
Tessa

I am also having fluid build up problems at my left battery site. I'm 5'6 maybe a little more and weigh around 112-115, depending on scale. When I got my other one, I weighed about 150. I did not have the fluid and scarring in problems. NOW it Sticks out, but doesn't bother me near as much as the left. I hope it will settle. We are watching it closely. It's been a pain in the, well you know lol. I got my cervical implant in March, so I've been battling mine since then. I refuse to take it out.

Did the temp help your pain enough to get the permanent Azdi?

TK

You'd think it would be an easier decision after the trial, but no. For now I've decided to wait a lilttle bit. I'm going to look into Calmare therapy day after tomorrow and I'll post what I find out about that.
I just don't want to rush into it if I can buy some time.

I sure hope that Calmare works as well for you as it did for my daughter!! But please do share your results, whichever way it goes, because information on the various treatments is helpful to others.

Another non-invasive treatment that I've heard work for some is H-Bot. There's a new member here whose daughter did well with it.