Hi everyone! I currently have the temporary trial spinal cord stimulator. Today is my first day with it and i'm not having much luck but I am just dealing with one day at a time. Has anyone had a stimulator? And if so what did you like/dislike about having one? If I see results with this I may consider the permanent one.

Anyone can im me anytime. I am on aol and always looking to chat with others who have RSD?CRPS

Hi,

I have had one and I had good luck with it. I found the trial left me in quite a bit of back pain. It took me almost 3 days before I felt like getting out of bed, but then I found I could get up and walk around much better then before. I had the perm place about a month later. the recovery is harder than I thought it would be. Once I started to heal from the surgery I wanted to get up and move and that is when you really have to be careful not to bend and twist and move too much. After a few months things were much better. I did end up having it removed and a new one put in, and then I developed an infection and had the complete thing removed. When it worked, it was great. I really wish I had better luck, but things didn't work out that way. I may consider having it put back in way down the line, but for now I'm still healing from the surgeries. I really hope it works for you, and that you try different setting on the unit. See what works and what doesn't. Just remember that as you move with the trial, it will change how it feels to you. It isn't the same when you get the perm one. any questions, just ask.

Hugs
Mary

Hi ducky,
My fiance' has the permanent stim now, and he's doing great. The trial does feel much differently than the implanted one. Give yourself a couple of days to get over some of the soreness, then try to start doing things slowly. After about the 4th day, Reed could really tell a huge difference. he hadn't walked in 6 months, and now he can! He has a limp, but hey.. it's so much better than being on crutches!
Remember, if you decide to get the implant, do exactly as your doc tells you. Those restrictions are there for a reason, and they are extremely important. Reed was having really bad tremors right after surgery, and his arms jerking moved his leads after 3 days. Luckily, not enough to have a revision surgery, but if they move any more, he will have to undergo surgery again. The soreness and pain is no walk in the park, but if it helps you, it's well worth it in the end.
Good luck!

I haven't had the SCS implanted as I am only a child and my Pain Management Doctor doesn't agree on implanting SCS's until you are at least 16 years old. It is something that I would look into in the future though if I have tried everything else and things don't seem to be getting any better. They don't seem to implant as many SCS's over here in the UK as they do in the US - ever here, the SCS's are thought to be a last resort.

I have spoken to others that have had the SCS and it's a very mixed response. Some people are doing great whilst others, the surgery caused a spread of their symptoms and made them worse or it didn't work at all. I've spoken to a lady who had an SCS implanted whilst she had RSD just in her left arm and it spread full body following the surgery. I have spoken to several others though that say that they couldn't live without it and that it has helped them so much!!

I think if I was you, I would weigh up the pro's and con's before agreeing to have any surgery. Usually if the trial doesn't work for you, then the surgery wont either.

I wish you the very best of luck with the rest of the trial and please keep us updated when you can!!

Hi Mary! Thanks for posting a reply, I appreciate your time to do so. Its been day almost 4 days since I've had the trial and I am not noticing much improvement in my pain. I was sore for 2 days and getting around was more difficult, considering I can't walk from having RSD in my right leg. Different things work for different people I suppose depending on the scenario. I'm just really bummed and don't know what my next step will be. I don't think I will get the permanent SCS though. Anyways thanks again. Hope your having a good day. I know the snow and cold weather hasent been helping me.

Please keep posting on your SCS impant, I am trying to find out as much as I can from others who have had the trial and the implant. My doctors are telling me there's nothing more they can do for me, this is the next step..

I hope you start to feel some relief soon..

Hi.

I just had my permanent implant on November 17th. I have RSD in my arms - primarily in my left due to rib resection surgery for TOS.

My surgeon told me to allow for 3 weeks. I wish I had taken 4 weeks off from surgery. I got the flu the second week (and came really close to being tested for meningitis) so I really only had a week of recovery time to get moving before going back to work (I have a desk job). I had a hard time getting through the day. My neck/back wasn't able to hold me up for the full duration of the day.

As far as how I feel now, I'm still very sore. I'm told that I'll be sore for about 3 months. Recovery was better after I got the staples out.

I have controlled the movement in my neck because of the risk that the leads could move. Some of the things that I've done is not gone on the highway due to not looking over my shoulder, not sleep on my stomach so my neck isn't turned, be very careful when people talk to me so that I don't move my neck quickly to turn to talk to them, etc. I'm told that I need to do this for 6 weeks.

The stimulator has helped with the sensitivity in my arm. I actually has taken it away. I have stopped taking the narcotic medication. I will be reducing the neurontin, but I want to wait a little bit to get used to the stimulator and to slowly turn it up.

So I am getting more confused as the days go on and I see my PM doctor tomorrow who wanted me to try the SCS implant. It hasent changed my pain hardly at all and they say it should reduce my pain by 50%. My foot isent as swollen, but when I walk and sit for too long it swells right back up. So I don't know what else my PM can do for me. Does anyone know what his next step may be? I want to get a second opinion before I agree to a permanent implant, the permanent scs would be as a last resort. I have heard mixed responses from quite a few people and I am not sold on it. Plus living in NY where it snows and is cold that dosen't help my pain at all, and I am afraid to leave the house for fear of falling. I use a cane and I have started to use a walker when needed (which I never thought I would use at such a young age,so it took a lot for me to even set my hands on one)I'm on aim if anyone wants to tak and share. My screen name on aim is duckygal818. Thanks!

i had a trial stim put in, when my rsd was from fingers to elbow left side.... it worked great. then i had the perm put in and it caused me to spread up to my neck. and there was no coverage and the pain was worse. i would get shocked from the stimulator and my back and hip always hurt when it was cold, i ended up having it removed about a year later.

I don't have the stim, but i have a question. I heard from my pain doc the sooner the stim put in, the better response you get from it. is that true?